Generated by All in One SEO Pro v4.9.7.2, this is an llms-full.txt file, used by LLMs to index the site. # #post_seo_titlefirst published onLiving Well With Epilepsy ## Posts ### [Epilepsy Blog](https://livingwellwithepilepsy.com/epilepsy-blog) **Published:** February 20, 2013 **Author:** Jessica K. Smith **Content:** --- ### [The Epilepsy Minute: August Edition](https://livingwellwithepilepsy.com/epilepsy-news-and-research/newsletter/the-epilepsy-minute-august-edition.html) **Published:** August 18, 2025 **Author:** Jessica K. Smith **Excerpt:** Welcome to The Epilepsy Minute, filled with tips from people living with epilepsy, the latest at LWWE, and important epilepsy info.  **Content:** ## Hello from Our Epilepsy Founder Welcome to our first edition of The Epilepsy Minute, filled with some real talk from people living with epilepsy (like me and others around the world), what’s the latest at LWWE, and some epilepsy info you should know. Epilepsy Walks and Epilepsy Awareness Month will be here before we know it. Of course this time of year looks different for everyone. For some it’s an opportunity to become a loud and proud advocate, and for others it is a bittersweet reminder of loved ones, or experiences lost. Either way, we’re thinking of you! Some of you may know I took a little break from social media and newsletters in recent months. My ovarian cancer journey, the state of the US, and the importance of our epilepsy coaching has taken priority. Now I’m back, and with lots to talk about. Included in this edition you will learn about: - rescue meds at school - protections afforded by the IDEA act - summer travel tips - how to take advantage of free epilepsy coaching I can’t wait to share these regular updates with you and connect you with the amazing resources in the epilepsy community. ### Best, Jessica --- ## Epilepsy Rescue Meds at School This time of year kids and adults with epilepsy are heading back to elementary and high school, college and grad school. In preparation, we have put together an article on 5 things to remember about administering rescue medications. [**Read the Article**](https://livingwellwithepilepsy.com/aboutepilepsy/rescue-medication/5-things-to-know-about-administering-rescue-medications.html) --- ## IDEAs for Back to School with Epilepsy To parents of children with epilepsy, heading back to school can feel like heading into a hurricane. But it can help to know there are resources available to you and your family. Included are websites on how to talk to school about epilepsy and information on the [Individuals with Disabilities Education Act (IDEA)](https://www.understood.org/en/articles/individuals-with-disabilities-education-act-idea-what-you-need-to-know). It is important for all parents of children with epilepsy to know that IDEA exists for your protection. I’ve shared some resources available at [understood.org](https://understood.org). **[Read the Article](https://livingwellwithepilepsy.com/parenting/school/backtoschoolwithepilepsy2012.html)** --- ## Summer Travel and Epilepsy Ever wondered if there is a link between air travel and increased seizure activity? Yeah, we have too. And while this article won’t definitively answer your question it will let you know you are certainly not alone in raising that question. **[Read the Article](https://livingwellwithepilepsy.com/livingwell/travel/traveling-epilepsy-air-travel-altitude-lower-seizure-threshold.html)** --- ## Epilepsy Coaching is FREE Have you ever left your neurologist appt with more questions than answers? Or were you left half-way between appointments with a really frustrating issue. And to make matters worse that issue seems to have nothing to do with your meds or your seizures but is definitely caused by your epilepsy! Yup been there. That’s why we started offering [**epilepsy coaching**](https://livingwellwithepilepsy.com/epilepsy-health-coach-programs). You know just like they offer for Diabetes, Cancer, Heart Disease and other chronic illnesses. And what’s even better is it’s free! [**Learn More**](https://livingwellwithepilepsy.com/epilepsy-health-coach-programs) to take advantage of this free service. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Newsletter **Tags:** epilepsy newsletter --- ### [Epilepsy Blog Relay™: Coping with the holidays](https://livingwellwithepilepsy.com/life-with-epilepsy/mentalhealth/coping-with-the-holidays.html) **Published:** November 25, 2016 **Author:** Emily Lawrence (Nee Donoghue) **Content:** [![emily at christmas](http://livingwellwithepilepsy.com/wp-content/uploads/2016/11/DSC_0411-e1479949068556-300x300.jpg "emily at christmas – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2016/aboutus-lwwe/emilys-perspective/coping-with-the-holidays.html/attachment/dsc_0411)***This post is part of the [Epilepsy Blog Relay™](http://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-nov2016participants) which will run from November 1 through November 30, 2016. Follow along!*** #### Emily’s Perspective It’s the most wonderful time of the year!!! Christmas and wintertime are my favourite time of year, and for so many others too, but this festive season can be a difficult time for people with epilepsy and associated conditions as there can be triggers. #### Holiday lights If someone has an Epileptic seizure when looking at flashing or flickering lights, this is a sign that they possibly have **[photosensitive epilepsy](http://livingwellwithepilepsy.com/2013/epilepsy-news/emilys-story-absence-seizures-part-1.html)**. Whether you celebrate Christmas or not, it is inevitable that there will be hundreds of Christmas lights around you for a month or so, some of which can be flashy, and by that I don’t mean ostentatiously attractive. Christmas lights and decorations put up by organizations should not flash at a rate that could trigger seizures in people with photosensitive epilepsy. The unit of frequency lights are measured is in Hz. Most people with photosensitive epilepsy are sensitive to 16-25 Hz. Although organizations generally follow guidelines for the public, individual stores that sell tree lights do not have to comply with health and safety regulations, so this can be the main worry for people living with epilepsy. #### Tips to protect against holiday lights Although I cannot stop your seizures or my seizures, I can offer you some tips on preventing seizures and protecting yourself from those flickering lights. 1. My top tip for preventing a seizure due to photosensitivity is cover one eye. Sounds odd, right? But it works. Cover one eye and turn away from the source of flashing lights. Researchers have found that if only one eye is exposed to the flickering screen, a smaller area of the brain’s cortex is affected than when both eyes are exposed. The difference is significant enough to greatly reduce the likelihood of a seizure. 2. My other tips for you for keeping those seizures at rest is to get plenty of sleep each night. Christmas is exciting for the little ones, so in the run up to the holidays — set a regular sleep schedule, and stick to it. I tend to wind down by 9pm, read a book or sit watching a bit of tv before heading straight to bed. 3. Learn stress management and relaxation techniques. 4. Plan Ahead. Start making a list of things you need to do for Christmas early. We get our shopping (food & decorations) ready weeks beforehand; it’s easy to make a list so you can tick off what you have done and what is left to do. #### Stress and crowds Write your cards early, wrap your gifts early and even buy your gifts months before. Christmas soon arrives and I hate shopping when hundreds of people are in the shops at once, this is a huge trigger for me. If it’s already too late for you to plan now, save this article for next year! #### Know when to stop Decide when you will stop your Christmas preparations and start to relax and enjoy the holiday. Work towards and try to stick to this goal, even if it is in the late afternoon on Christmas Eve. Remember that Christmas is your holiday too. Don’t spend it being stressed. #### Practice your breathing When we’re stressed our heart beat increases and our breathing shallows. Breathe in deeply through your nose, and then breathe slowly out through your mouth, repeat for a few minutes to instantly help reduce stressful feelings. And remember, keep moving – keeping up your regular exercise routine can give you the fitness and stamina to make it through the demands of the festive season. Even an evening walk will help a lot. #### Make a schedule If you’re struggling with managing time on the day, and you need a little help, try writing a holiday schedule. I do this everyday! But on Christmas it is especially useful. Make a note of when you want to put the turkey in the oven or when to start making the crumble. #### Forget the drinks, remember the meds The next big tip is to avoid the alcohol. I don’t mean avoid it altogether, but try not to overdo it; excessive alcohol dehydrates your body and makes your liver work overtime to process it. Alcohol can also mix badly with anti-convulsions, so be careful. With all the excitement it is easy to forget to take all of your medications. Make an alert on your phone or to do list, to ensure you take your medications as normal. Skipping your meds can be a huge seizure trigger. #### Have fun It’s your holiday too, so remember to relax and have fun, laugh and be thankful. Christmas time is the chance to spend time with your loved ones, a time to enjoy and to be thankful. Skip TV and computer time whenever possible. Excessive use of the TV or computer can be a big strain and although it’s easy to get drawn in by all the holiday shows or those games your children may have received for the PC, it is important that you take time away and give your eyes and brain a little rest. If things don’t go to plan, do not to worry, instead laugh about them and make them into fun memories that you can talk about during holidays to come. Have a great, stress-free, holiday season! --- ***[![IMG_2587](http://livingwellwithepilepsy.com/wp-content/uploads/2016/05/IMG_2587-150x150.jpg "IMG_2587 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/img_2587)NEXT UP:*** *Be sure to check out the post tomorrow by Audra on . For the full schedule of bloggers visit*[ *the Participants gallery.* ](http://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-nov2016participants) ***Don’t Miss It:** Don’t miss your chance to connect with bloggers during our Twitter Chat using the hashtag #LivingWellChat on November 30 at 7PM ET.* ![author avatar](https://secure.gravatar.com/avatar/5523d28ae8bbaedc9d082d51d29393ca490379cd31464b99ab3c7d50a49362ac?s=300&d=mm&r=g) Emily Lawrence (Nee Donoghue) 25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England. Emily's Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10. Based in UK. [See Full Bio](https://livingwellwithepilepsy.com/author/emilyd) [ ](https://livingwellwithepilepsy.com/author/emilyd) **Categories:** Mental Health **Tags:** Epilepsy Blog Relay --- ### [Epilepsy Blog Relay: Self-care is more important than ever](https://livingwellwithepilepsy.com/life-with-epilepsy/mentalhealth/self-care-more-is-more-important-than-ever.html) **Published:** November 2, 2018 **Author:** Guest Contributor **Excerpt:** Living with epilepsy, I’m finding self-care to be more important than ever **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/10/ChristalleBodiford_sm-300x220.jpg "KODAK Digital Still Camera – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/portfolio/nov-2-christalle-bodiford/attachment/kodak-digital-still-camera)**This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from November 1 to November 30, 2018. Follow along!** #### Christalle’s Story Transformations—broad, fundamental, positive, forward-moving changes – power Christalle Bodiford’s work as an epilepsy advocate, activist, and artist. Frustrated by the negativity dominating many of the “support” groups for epilepsy, Christalle founded Life Elektrik to fulfill a pivotal need among those it impacts: a positive nexus of story-sharing, education, community, and genuine support. Christalle’s [epilepsy story](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/mar-18-ebr-posts/epilepsy-blog-relay-epilepsy-isnt-my-only-story.html) is a tale of surprise, fear, misdiagnosis, and misdirection but one that has taken a positive turn. After a successful career in the fashion industry, she has come to see that her true mission is to work her artistic magic on human hearts – specifically, the hearts of fellow warriors struggling to live out their dreams under the often dark and stormy sky of neurological disability. This website is a space to share her personal journey – navigating the world while living with epilepsy. --- Related: [**Self-care tips to try**](https://livingwellwithepilepsy.com/2018/livingwell/self-care-tips-to-try.html) --- #### Coming to terms with limitations I read a graphic the other day that said something along the lines…”It takes a person with epilepsy five times more energy to do something than a person without epilepsy.” I tried to fact check this stat, but I didn’t have any luck. But one thing I do know is – I could definitely relate to the sentiment. Like many with epilepsy, I constantly feel tired. I can never seem to get enough rest. I wake up multiple times each night, grind my teeth while sleeping, and have anxiety that often keeps my mind racing when I should be off in dreamland. I cope in different ways, but with a busy schedule that often causes me to feel unbalanced, I’m finding self-care to be more important than ever. [READ MORE ](http://www.christallepistol.com/) --- **NEXT UP:** Be sure to check out the next post by Audra at **TWITTER CHAT:** Save the date for the #LivingWellChat on December 6 at 12 Noon ET. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/11/EBR-Nov18-150x150.png "EBR - Nov18 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/november-2018-participants)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our generous sponsors and partners! [Become a Sponsor ](https://livingwellwithepilepsy.com/2018-19-media-kit-_all) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Mental Health --- ### [4 ways to manage exhaustion](https://livingwellwithepilepsy.com/aboutepilepsy/sleep/4-ways-to-manage-exhaustion.html) **Published:** January 7, 2019 **Author:** Guest Contributor **Excerpt:** Shonet shares examples of epilepsy and fatigue in her own life and a few tips to actively avoid getting to the point of total exhaustion. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/01/img-20181110-wa0014_3-223x300.jpg "img-20181110-wa0014_3 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/aboutepilepsy/sleep/4-ways-to-manage-exhaustion.html/attachment/img-20181110-wa0014_3-2)Shonet’s Story ‘Always’ ‘Tired’. That’s a tattoo the artist, Post Malone recently added to his ever increasing collection of tattoos. Although it didn’t mean anything to him and he did it on a whim, the first thought that came to my mind was “hey I should get a tattoo like that, it would be funny”; only because I related to it so much. \[Disclaimer: Joking about my disorder keeps me sane and helps me not take it so seriously 🙂 \]. People that have epilepsy or a seizure disorder tend to show [more signs of fatigue](https://www.sciencedirect.com/science/article/pii/S1059131116302126) than those who do not have epilepsy or a seizure disorder.[1](https://www.sciencedirect.com/science/article/pii/S1059131116302126) I remember the time when my then 3 year old said “I am so tired” with a sigh; I had mixed emotions about it. On the one hand, I felt happy to know that she was able to express how she felt appropriately at that age, but on the other hand, I was sad that she had learned what it meant at such an early age. It also made me realize that I probably say it so often, it had become part of her vocabulary. #### Mommy on my own There was another time when my husband took a much needed boys trip for a few days and I had to manage a toddler and run the house by myself. Now this might be just normal life for some people, but for me it is a bit of a challenge, especially since I am not in that situation often. Those of you who have kids will understand the perils of this and for those that are single parents, I salute you! After a few days of being on my own with my toddler, I unconsciously blurted out “Oh I am so tired,” to which the little monster disappointedly said, “But Daddy never gets tired Mama.” As she said this, I could feel the tears just welling up in my eyes; for so many reasons. I felt sad that I have [epilepsy](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/nov-18-ebr-posts/5-tips-for-dealing-with-an-epilepsy-diagnosis.html) and got tired so quickly, I felt sad that my daughter had to feel that way and I felt like I had failed her as a parent. But like various other situations, I held myself together and said “Yes I know love but Dada doesn’t have [epilepsy](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/nov-18-ebr-posts/5-tips-for-dealing-with-an-epilepsy-diagnosis.html) and I do, so I get more tired.” She understood what that meant, as much as a 4 year old can anyway. I do talk to her quite regularly about the fact that I have epilepsy, so she is aware and gets it. I need her to know, so that when she is with me, if something happens, she does not freak out and can call for help. --- **Related:** [5 year old Riley explains epilepsy first aid](https://livingwellwithepilepsy.com/2018/aboutepilepsy/epilepsy-first-aid/tips-on-epilepsy-first-aid.html) --- I have plenty more examples of epilepsy and fatigue, but what I really want to share is how I try to actively avoid getting to the point of fatigue on an everyday basis: **Try limiting social outings a bit** The first thing I do is plan less social events and outings. Before we used to be go-go-go all the time, but now I schedule just one social event every weekend and that does the trick. This helps me rest and recuperate before the week starts. Now let’s be honest, there are times I am forced to make an exception, at which time I prepare myself for what’s going to happen the day after. Basically major fatigue which means hours of sleeping in, body ache, muscle tightness, and inability to do any focused tasks. I just eat, drink water and rest, so I am well the next day. And these days are what Netflix is for!! This fatigue is similar to what one would go through after a seizure, but that would last a couple days. So we have managed to keep this ‘one event’ rule going pretty well so we can transition onto the next thing on our ‘to do’ list. Interestingly enough, doing this has also helped me improve my ability to say ‘No’. It is something most of us struggle with, so in a way I am happy I have somewhat won that battle! **Be realistic about to do lists** Speaking of ‘to do’ lists, I assess each task on my list by the time and effort it will take, based on which I set up my plan for each day. While a normal person might take 2 hours to clean out their closet, I might take 4, or sometimes even the whole day. And at the end of that day, I might still be a bit tired but likely not fatigued. This also applies to tasks that require major mental focus. Those often result in a headache or tiredness if I don’t limit my time on said task. Of course this doesn’t always go as planned, but for the most part, it works for me. **Vitamins and exercise (yep, old school)** Another thing I try to do is take my vitamins on a daily basis. Many neurologists encourage women of child bearing age to take folic acid. You may also want to check with your neurologist to see if you should be taking vitamin D. In addition, eating well and getting some form of physical activity is also an important way to keep my body from shutting down. A bit of an irony, but it works as long as you keep the physical strain in limits. **A little quiet time** This one is not only important for those of us with epilepsy, but also for others who do not have this disorder. We all know as parents how difficult it is to get a [little moment to yourself](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/nov-18-ebr-posts/fran-encourages-others-to-seize-adventure.html), so doing anything you can to get this in would be good. Besides locking yourself in the bathroom of course, because we all know how well that works ;-). Personally, I take some time to myself before going to bed to clear my mind, read and relax. It just helps me unwind and forget about all the things on my ‘to do’ list. I also make sure I get regular massages to ease my muscles. So now when I hear “Why are you so tired today? We barely did anything” (and I hear it often enough!), I remind people of the fact that epilepsy and fatigue go hand in hand, which they don’t often realize. They are two sides of the same coin and we just have to learn how to deal with it in any which way we can. These tips help me and I hope they help you. Just remember, you cannot pour from an empty cup, so breathe, rest, relax and focus on what’s important for you to be at peace. #### [Now your turn: Share how you manage your fatigue](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) --- 1. Fatigue in epilepsy: A systematic review and meta-analysis – Terms and Agreement I agree ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Sleep --- ### [7 Epilepsy Self-Care Tips to Try in 2025](https://livingwellwithepilepsy.com/life-with-epilepsy/mentalhealth/self-care-tips-to-try.html) **Published:** February 25, 2025 **Author:** Jessica K. Smith **Excerpt:** Self-care for 2023: Dealing with change is hard, no matter how long you've had epilepsy. Here are some self-care tips to help keep you going through the year. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/01/pexels-ron-lach-8142198-1024x683.jpg "pexels-ron-lach-8142198 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2023/01/pexels-ron-lach-8142198-scaled.jpg) ## Epilepsy Wellness The news is a little like a firehose these days and we know stress can be a seizure trigger. Of course, epilepsy is varied and the effect on each individual will depend on the type of your epilepsy and your seizures. But let’s be honest, a little self-care never hurt. ## Self-care and epilepsy In my case having Epilepsy and side effects from my meds has caused me to experience depression and anxiety. This depression and anxiety has made me not want to socialize, not want to leave the house to meet people. For years I thought I was alone in feeling this way but I really wasn’t. If you have been diagnosed with epilepsy, it is not unusual to feel some anxiety, sadness, or concern about the situation. Whatever your age, you will be wondering how best to manage the many challenges you may face. Learning as much as you can about your epilepsy may help you to feel more confident about managing the condition, but also how to manage everyday obstacles. ## Self-care Tips: ### 1) Get some sleep Sleep deprivation is known to be a common seizure trigger. A regular sleep routine like going to bed at roughly the same time each night and waking at the same time in the morning promotes good sleep. Sleep can affect seizures in lots of ways. During normal sleep-wake cycles changes in the brain’s electrical and hormonal activity occur. These changes can be related to why some people have more seizures during sleep than others, and why not getting enough sleep can trigger seizures. In fact, some people’s seizures are tied very closely with their sleep. They may have all their seizures while sleeping, which is known as Nocturnal Seizures, or when falling asleep or waking up occurs. For other people, sleep may not be a common trigger-so maybe they are overtired and faced with stress which will then trigger a seizure. ### 2) Avoid visual triggers Some people with epilepsy are photosensitive. Flickering television images, TV games, and flashing lights can provoke seizures. If a person with epilepsy is watching TV, it is advised that the rest of the room is then well lit and that the person watching TV is at least eight feet away from the TV. Or when it is time to wind down for bed use a sleep mask to block out any stray LED light. ### 3) Move a little Aerobic exercise is good for sleep and overall health. Of course, those of us living with Epilepsy should take precautions. For example, don’t swim alone and make sure any exercise area has cushioned flooring and is free from obstructions. If you haven’t tried yoga you could give it a try at a local studio. Or even just throw on some sneakers and go for a walk. If you’re someone who likes to get gold stars for your accomplishments (I do) you could try a wearable to track your progress. ### 4) Eat a balanced diet For anyone who wants good health, doctors stress eating a balanced diet with a variety of healthy foods — and for people with epilepsy there are some additional considerations. In some people, disturbances in levels of calcium, magnesium, and sodium can be caused by antiepileptic drugs. Vitamin D, which is extremely important for bone strength, can be diminished by AEDs. Make sure you eat plenty of foods high in Vitamin D, like; -Fatty fish, like tuna, mackerel, and salmon. -Dairy products, orange juice, soy milk, and cereals. -Cheese. -Egg yolks -GREENS!! **TRY THIS:** For more info on diet and epilepsy check out: [DIET AND EPILEPSY ](https://livingwellwithepilepsy.com/2022/aboutepilepsy/nutrition-and-epilepsy.html) ### 5) Manage stress I can’t say enough how much Yoga and Meditation have helped me recently! Yoga lowers stress and improves your mood. Some yoga methods use specific meditation techniques, which focus the mind on your breathing to quieten the constant fog that goes on in your head after work or when you’re anxious. It also relieves stress and allows you to feel relaxed. Practicing breathing techniques can also boost oxygen levels to the brain, leaving you feeling happier and more content with everyday life. Pets are also a great source of love and support. ### 6) Don’t skip medication Seizures can be provoked simply by missing a dose or two of medication. Put medication in a place where the person who is taking it is not likely to overlook it. For instance, I leave mine in the bathroom because I know I will see it whilst brushing my teeth in the morning and the evening. ### 7) You are worth it And remember, you are worth the effort! Take the time to care for yourself. Make it a goal for 2025! ### **COMMENT BELOW on how you are incorporating self-care into your daily routine this year.** ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. 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](https://linkedin.com/in/) **Categories:** Mental Health **Tags:** #epilepsyandsleep, #epilepsysupport, #photosensitiveepilepsy, #selfcare --- ### [Rachel tackles the mental health issue](https://livingwellwithepilepsy.com/life-with-epilepsy/mentalhealth/rachel-tackles-the-mental-health-issue.html) **Published:** September 7, 2017 **Author:** Rachel Ehrhardt **Excerpt:** I’ve decided to do a two part series on Epilepsy and Mental Health. This month will touch on statistics and show you are not alone. Next up: support systems **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/05/IMG_4694-768x1024.jpg "IMG_4694 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/rachels-perspective/healthcare-debate-rachels-story.html/attachment/img_4694-2)The Mental Health Issue: Part 1 Hi followers!! Sorry for the lapse in writing again. I have decided to go back to school full time as well as working a full time job so my spare time has been rare the past few months. For months I have wanted to do a series regarding mental health in the seizure disorder community. I really did not know how to approach it or how to separate it. I’ve decided to do a two part series. This month will be regarding the statistics and that you are not alone. The next month will be about approaching how to setup a support team, ways to identify red flags, and how to approach relationships. #### The research says I’m not alone I came across a study about a year ago and it hit me that mental illness is not just a journey I take alone, but rather the majority of those suffering from seizure disorders also struggle with one or more mental illness diagnoses as well. According to the [study conducted in 2016 by the Center for Disease Control (CDC) and the International League Against Epilepsy (ILAE)](http://emedicine.medscape.com/article/1186336-overview), of patients with complex partial seizures in the study, seventy percent of them identified with one more diagnoses found in the DSM IV (the Diagnostic and Statistical Manual of Mental Disorders) fifty- eight percent had a diagnoses of depressive episodes. Thirty- two percent had been diagnosed with anxiety without panic or anxiety disorders. The risk of psychosis in patients with epilepsy may be six to twelve times that of the general population. The two most prevalent disorders in the study are depression and anxiety. #### A good support system is key From trial and error as well as being in the Epilepsy community (with all three of our family) we have found the key to a healthy, both mentally and physically, starts with by having a good support system around you including a supportive team of doctors as well a therapist, and a great psychiatrist . We have had many people come and go in our team of doctors but the most successful combinations have included a psychiatrist who specializes in pharmacology and is not afraid to look at the big picture when it comes to the many changing pieces of the chemical balances of epilepsy medications. I will be the first to admit (and it has taken me a while to admit this to the world so bear with me). I have had my own deep dark battles with depression and anxiety. I say this not out of sympathy but to let others out there know that you are never alone. The bloggers on here are always happy to answer questions and help direct you resources in your area. --- #### Make a Difference Rachel is located in Houston and has seen the devastation left behind in Hurricane Harvey’s path. Please consider making a contribution to: #### Kingwood Park Student Fund This is a fund for students of Rachel’s dad’s high school that lost everything. #### The Midtown Kitchen Collective ![author avatar](https://secure.gravatar.com/avatar/82d406d4460971f22d36968d14d1294a2a0c55c719c5b66a09acb2d2ad3872f2?s=300&d=mm&r=g) Rachel Ehrhardt Rachel Ehrhardt Streelman is from Houston , Texas. She has been a writer and contributor to Living Well with Epilepsy for two years. Rachel has had epilepsy since 9 months old. She comes from a family where her father, sister, and herself all have different forms of epilepsy. Rachel is married to Casey and they have a Cavapoo named Sheldon. [See Full Bio](https://livingwellwithepilepsy.com/author/rachel) [ ](https://livingwellwithepilepsy.com/author/rachel) **Categories:** Mental Health **Tags:** mental health --- ### [4 tips to help bust a bad mood](https://livingwellwithepilepsy.com/life-with-epilepsy/mentalhealth/tips-to-help-bust-a-bad-mood.html) **Published:** September 28, 2017 **Author:** Emily Lawrence (Nee Donoghue) **Excerpt:** Try these tips to bust a bad mood **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2015/11/em.jpg "em – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2015/epilepsy-blog-relay/epilepsy-blog-relay-epilepsy-depression-and-a-little-creativity.html/attachment/em-2)I have had my medications put up, down, back up again so much recently that I’m feeling less cheery; I’m more stressed; my sleep is dreadful; I’m way behind in my writing-I mean how long has it been since my last post? I thought I would share a [list](https://www.epilepsysociety.org.uk/) of reasons for what may be causing you to have a bad mood (along with a few tips) if you struggle like me too. #### 4 Reasons for a Bad Mood (and tips to help) **Stress** Stress may lead to feeling that you can’t cope, to anxiety or depression and to a higher risk of seizures. Exercise and keeping activemay help to lower stress. Complementary therapies that relax you may help to reduce the risk of seizures. I have recently bought myself some Lavender treatment to use before bed, and I have taken up more meditation and Yoga. **Lack of Sleep** Lack of sleep or sleeping at irregular times may lead to tiredness and low mood, difficulty with concentration, a higher risk of missing medication and a higher risk of seizures. Keeping active and going to bed at the same time each day may help you to sleep longer and in a regular pattern. If poor sleep is a big problem for you, your GP may be able to recommend further help. I try to keep my routine the same on work days. It helps a lot. **Memory problems** Concentration or memory problems may mean it is harder to take in information, and you may be more likely to miss your medication, leading to a higher risk of seizures. Using memory aids such as lists, alarms, sticky notes or drug wallets can help you remember and focus on one thing at a time. I have a pill box and set numerous alarms on my phone to remind me to take my meds every morning and night, and I also take emergency medications with me everywhere I go in case I get caught without my medications if I am out of routine. **Low self-esteem** Low self-esteem may make it harder for you to socialise, and harder to talk to your doctors about managing your epilepsy. This could lead to a higher risk of seizures. Joining a group where you have a shared interest may help lift your mood and boost your confidence and self-esteem. Helping a friend, or taking part in a community activity or in voluntary work can be valuable for you and for other people. #### What works for me I have started to keep a diary of my mood, along with a record of any medication changes, so that I can see whether there are any links. There is always a light on the other side of the darkness, and I don’t want you to ever forget that if you are feeling low. Some feelings should not be ignored, especially if you are having thoughts about suicide, or about death generally. Telling someone how you feel is the first step to feeling less alone. Telling your doctor or nurse how you feel means that they can help. #### Em Says [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/09/lwwe-photo-e1505917533616-150x150.jpg "lwwe photo – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/livingwell/emily-challenges-the-status-quo-of-her-mood.html/attachment/lwwe-photo)Despite feeling so bad recently, I have carried on with all my general duties and working as hard as I can. I will be back to my normal writing columns on time soon and back to my helpline too. Feel free to comment below on how you handle a bad mood. ![author avatar](https://secure.gravatar.com/avatar/5523d28ae8bbaedc9d082d51d29393ca490379cd31464b99ab3c7d50a49362ac?s=300&d=mm&r=g) Emily Lawrence (Nee Donoghue) 25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England. Emily's Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10. Based in UK. [See Full Bio](https://livingwellwithepilepsy.com/author/emilyd) [ ](https://livingwellwithepilepsy.com/author/emilyd) **Categories:** Mental Health --- ### [Patience and Epilepsy: A great ally when it comes to managing stress](https://livingwellwithepilepsy.com/life-with-epilepsy/mentalhealth/patience-and-epilepsy-a-great-ally-when-it-comes-to-managing-stress.html) **Published:** March 15, 2021 **Author:** Guest Contributor **Excerpt:** Patience has been Justin's best ally when it comes to epilepsy. By recognizing side effects and memory loss can help helps to reduce stress. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/02/trintized_1244751540_1280356060.jpg "trintized_1244751540_1280356060 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2021/02/trintized_1244751540_1280356060.jpg)Justin’s Story For 35 years I have had [epilepsy](https://livingwellwithepilepsy.com/2015/aboutus-lwwe/emilys-perspective/new-to-epileptic-seizures.html) and have found that although I have my seizures under control with medication, occasionally they will happen even with taking medication. Over the years I have been on more than 15 different medications. A more likely number would be 20, however I can’t exactly recall to be honest. One of the side affects of having seizures and some medications are [memory loss](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/when-taking-it-slow-helps-seizure-control.html). Some days are good and things go smooth, and some days are not so good and are a bit turbulent more or less. It’s important to understand this in the moments of frustration when you can remember a sentence and or event that was just on your mind. Has memory loss ever been part of your frustration? To keep the turbulence to a minimum accepting that our brain and the neural networks may be a little over worked, and taking it slow for the time being is probably a good idea. These moments happen to me from time to time and are certainly uncomfortable and frustrating, especially around others in day to day life or work. I encourage you to try to remain calm in these moments and let them pass, they are only temporary but at certain times can happen. #### Patience and Epilepsy Patience has been my best ally, and by recognizing these moments for what they are helps to reduce any stress and anxiety that is potentially causes. Those with epilepsy and partners of epileptics should be aware of this so to help remember or remind us that it’s much easier to be aware and except this. Some days will be good, some in between and some will be better spent being patient and compassionate with ourselves. Although it has been difficult at times living with some of these side effects It takes strength to adapt to the constant changes and ups and downs that come from epilepsy. I used to view my condition in a negative light, however there is an opportunity to embrace the positive. I hope this helps you or someone you love that has epilepsy. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Mental Health --- ### [Epilepsy Blog Relay: A soon to be graduate searches for hope](https://livingwellwithepilepsy.com/life-with-epilepsy/mentalhealth/epilepsy-blog-relay-a-soon-to-be-graduate-searches-for-hope.html) **Published:** June 6, 2022 **Author:** Amanda Miller **Excerpt:** Amanda's passion has always been to be a writer, and more specifically a journalist. She shares her adventures and stressors when dealing with her epilepsy as this soon to be graduate searches for hope. **Content:** ## ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/06/img_4310-1024x576.jpg "img_4310 – Living Well With Epilepsy")Finding a passion My passion has always been to be a writer, more specifically a journalist, which, I started before even being qualified. And for the last three years, I’ve been at university, specifically the University of Central Florida, where I decided to go for [Writing and Rhetoric and Creative Writing](https://www.ucf.edu/college/arts-humanities/). When I tell you, it’s been a mid-successful adventure and a stressful, life-changing one, especially when dealing with my [epilepsy](https://livingwellwithepilepsy.com/epilepsy "About Epilepsy: The Basics"). ## Dealing with epilepsy It’s been scary; I had the biggest seizure in October, two days before my 27th birthday. It almost took my life. I have since been trying to recover from It, so much so that I had no choice but to take a break from my writing opportunities which shocked me and made my [anxiety and depression](https://livingwellwithepilepsy.com/2021/personal-epilepsy-stories/emotions-and-epilepsy-the-medical-team-support-groups-and-caregivers.html "Emotions and Epilepsy: The Medical Team, Support Groups, and Caregivers") turn to an extreme level. But, with memory loss, new meds, weight problems, and even possible surgeries, it’s been an adventure that has changed my life. Since birth, I have been living with epilepsy. I’m soon to graduate, and this semester has hurt me. I’m in the hope I can gradually go on the stage to receive my BA, and go on with my life safely and in relatively good health. ## Searching for hope Still, I would never have imagined even with this pandemic happening and rules and regulations that are changing the world and our communities. I wonder if there was any manual that I didn’t buy to let me know that dealing with epilepsy, lack of sleep, anxiety, and everything connected would be so hard for me to graduate and be alive. Only time will tell; I’m just in hopes. Read more of Amanda’s writing here: ![author avatar](https://secure.gravatar.com/avatar/318c3fcd626493c961380a6af77559b6a21e78aeaeb68b661b7a30e329e3e467?s=300&d=mm&r=g) Amanda Miller Amanda Miller is a Toronto, ON-based soon-to-be graduate with a BA and AA in English. She has several years of freelance writing with articles featured in Sheen Magazine, Femi Magazine, Unwritten, SpokenBlackGirl, and many more. She's been living with epilespy since the womb and continuing to fight the good fight and spreading awareness one article and conversation at a time. Her clips can be found at . [See Full Bio](https://livingwellwithepilepsy.com/author/mandimiller) [ ](https://livingwellwithepilepsy.com/author/mandimiller) **Categories:** Mental Health --- ### [Interview with founders of new seizure monitor](https://livingwellwithepilepsy.com/aboutepilepsy/seizure-monitor-beta.html) **Published:** September 5, 2013 **Author:** Jessica K. Smith **Content:** [![Collin and Aaron](http://livingwellwithepilepsy.com/wp-content/uploads/2013/09/Collin-and-Aaron-300x178.jpg "Collin and Aaron – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2013/09/Collin-and-Aaron.jpg)Founders of Life PatchI recently interviewed the co-founders of [Life Patch](http://www.lifepatchsystem.org/), a non-invasive real-time temperature monitoring system for children with febrile seizures. I learned about this potential new seizure monitor now in development, and how it may be a help to people living with epilepsy. It turns out co-founders, Aaron Goldstein and Collin Hill, heard about Living Well With Epilepsy from the [Wharton School Management 100 team](http://livingwellwithepilepsy.com/2012/10/wharton-school-partners-with-living.html "Wharton School partners with Living Well With Epilepsy") that helped us transition to a new site last year. Aaron and Collin were kind enough to answer a few questions about their project and how they got started. ### LWWE: What is Life Patch? A&C: Life Patch is a small, non-invasive, real-time temperature monitoring system designed for children who suffer from febrile seizures. Parents of children who experience febrile seizures must always be aware of a rise in their children’s temperature. Conventional thermometers can be difficult to use, uncomfortable for children, and most concerning, they only provide a one-time temperature reading. They cannot be used to monitor dangerous temperature spikes in children. ### LWWE: How does Life Patch work? [![Life Patch Logo](http://livingwellwithepilepsy.com/wp-content/uploads/2013/09/Final-Logo-LifePatch-300x240.jpg "Final Logo-LifePatch – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2013/09/Final-Logo-LifePatch.jpg) A&C: Life Patch consists of two parts – an electronic patch or “Brain Unit,” which is attached to the child via a disposable patch, and the “Relay Unit,” which sits in the same room as the child. The Brain Unit monitors a child’s core body temperature via an infrared thermometer and transmits data real-time through a nano-bluetooth chip to the Relay Unit. The Relay Unit uses proprietary algorithms to convert the measured temperature into an accurate reading of the child’s core body temperature and sends the temperature data to Life Patch’s servers. Using a smartphone or any Internet connected device, parents can constantly monitor their child’s core body temperature in real time and even receive alerts when their child’s temperature has reached unsafe levels. > To see a demo of Life Patch, check out – [https://www.youtube.com/watch?v=Ocrit\_jFybg](https://www.youtube.com/watch?v=Ocrit_jFybg) ### LWWE: What other applications do you have planned for Life Patch? A&C: In addition to the temperature monitoring system we are creating a seizure monitoring bracelet that will alert caregivers when the patient has suffered a seizure. Our product is unique because it can be worn on the wrist and does not need to be tethered to another device. ### LWWE: How did you come up with the idea? A&C: In 2012, Collin was diagnosed with Hodgkin’s lymphoma, a rare blood cancer. A serious issue during his healing process became clear during his chemotherapy treatments. Throughout the entire chemotherapy regimen and after when a patient leaves the hospital, it is essential for the patient to have access to medical facilities if the patient’s fever exceeds approximately 100°F. Collin often slept through his fevers at home, and upon waking up, was rushed to the hospital with a fever of 103°F or higher. There was no solution to this issue offered by his doctors, and Collin remained frustrated with the lack of technology available to resolve the problem, and the problem of thousands of other patients. ### LWWE: Why is this project important to you? A&C: After researching other medical conditions that correlated with high fevers, the Life Patch team was first exposed to the febrile seizure market through Aaron’s cousin Caroline. Caroline had experienced febrile seizures as a young baby, and her mother had no way to remotely monitor her temperature for signs of fever. Caroline’s mother expressed her frustration to Aaron over this issue, which had caused a great deal of distress for a long period of time. This personal connection acted as a call to action for Aaron and his team, catalyzing the rapid development of the Life Patch technology. Additionally, current seizure monitors are expensive and difficult to use. We believe that people at risk for seizures should have access to an inexpensive, easy to use monitoring system. [![Aaron pitching the concept](http://livingwellwithepilepsy.com/wp-content/uploads/2013/09/LifePatch-founder-pitch-300x200.jpg "LifePatch founder pitch – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2013/09/LifePatch-founder-pitch.jpg)Aaron pitching the concept### LWWE: What about Life Patch inspires you? A&C:We have received tremendous feedback and words of encouragement from people all over the world who have heard about our product. In addition, our partnership with the [Febrile Seizure Organization](http://www.febrileseizures.org.uk) has allowed us to work directly with the parents of children who have experienced febrile seizures to ensure that we create the best possible product. We have spoken to a large number of people with epilepsy who are dissatisfied with the current seizure monitoring systems. They have told us what they are looking for in a product, and this is the product that we are working to build. ### LWWE: What do you hope Life Patch can do? A&C: One in every twenty infants around the world experiences febrile seizures. In the United States alone, there are over 750,000 children who suffer from febrile seizures. These children would directly benefit from Life Patch, as currently there is no way to constantly monitor their temperatures for signs of fever. In addition to children with febrile seizures, Life Patch would be beneficial to children who have been diagnosed with ailments such as Familial Mediterranean Fever, Periodic Fever Syndrome, and Dravet Syndrome.Life Patch’s customers are not limited to individuals with diseases and medical conditions that are affected by body temperature fluctuations; other potential markets include athletes who must monitor for heat stroke, women who are tracking ovulation, and soldiers in combat. In addition, our seizure monitoring system would be useful to not only to children who experience febrile seizures, but would allow for continued expansion to new patient communities such as the epilepsy and autism population. ### LWWE: Are you gathering information from potential users as part of your Beta phase? A&C: We are. In fact, we would appreciate it if potential users of the temperature monitoring system could fill out this survey: ### LWWE: What are your next steps in developing life patch? A&C: We are currently working on developing the beta versions of both the temperature monitoring system and the seizure monitoring system. We are looking to collect a list of potential users for our products for at home trials. In addition, we are looking to gain insight from potential users about our product. ### LWWE: Where can we learn more? A&C: People can learn more by checking out our website: [www.lifepatchsystem.org. ](http://www.lifepatchsystem.org)You are also welcome to visit our [Facebook Page](http://www.facebook.com/lifepatchsystem) and follow us on [Twitter](http://www.twitter.com/lifepatchsystem). ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** About Epilepsy **Tags:** #epilepsy #seizures, epilepsy, Epilepsy Interview, living with epilepsy, the Wharton School --- ### [Epilepsy Blog Relay: Emily on using the Embrace2 to track her Epilepsy](https://livingwellwithepilepsy.com/aboutepilepsy/embrace2.html) **Published:** November 8, 2019 **Author:** Emily Lawrence (Nee Donoghue) **Excerpt:** I was reluctant to purchase the Embrace2 at first, but I've found this watch has allowed me to feel like I have my independence. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/02/51974366_2245493142370887_8047449779787005952_o-e1550020655326-300x300.jpg "51974366_2245493142370887_8047449779787005952_o – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/searching-for-my-passion-my-quarter-life-crisis.html/attachment/51974366_2245493142370887_8047449779787005952_o)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** #### Emily’s Update Hello to all new readers- I hope you are enjoying our November Epilepsy Blog Relay here on Living Well With Epilepsy. I hope you find it as inspiring as I do every day, every time! I am a regular writer here on Living Well, and have so much to share on my social medias. #### A Brief Backstory I’m [Emily](https://livingwellwithepilepsy.com/author/emilyd) and I am an aspiring Writer from the UK, and I have Epilepsy. My seizures started (knowingly), when I was around 10, and I am the first person in my family to have Epilepsy. I had [Absence Seizures](https://livingwellwithepilepsy.com/2016/epilepsy-blog-relay/nov16rachelehrhardt.html) as a child, and I was known as The Little Daydreamer for years and years! I quite liked it, as it was unique and was really a great description of me. I have always been very focused on journaling, and I found comfort in dreaming. It was all fun and games until diagnosis. I started onto some medication and it worked quite well. But a few years later, these seizures developed into more complexed types of Epilepsy including [Generalized Tonic Clonic Seizures](https://livingwellwithepilepsy.com/2013/personal-epilepsy-stories/tonic-clonic-seizures.html). It wasn’t fun being a daydreamer anymore. I work, full time, and I have always tried my best to do things that I want to with regards to work. I have never wanted to live a life controlled by Epilepsy, I have always wanted to work, own a house, start a family, go out. I have dreams but haven’t quite found the way to make it as a professional writer enough to be able to do it full time, but I will continue doing what I love. ## *Epilepsy sure does get in the way, but whether or not you let it hold you back is a different story.* #### Tech and Innovation with Epilepsy Immediately after my diagnosis in 2006/2007, I was no longer able to have a bath. I had to be supervised whilst swimming. I was no longer allowed on rides. And worst of all, I had daily medication. For peace of mind this year after having problems with my old smart watch, my Husband and my Mum invested in the Empatica Embrace2 watch. The delivery was fast too, it only took a few days to get to England. *This is not a paid advertisement.* #### Embrace2 I was reluctant to purchase the Embrace2 at first because of my initial experience with a smart watch for my Epilepsy. But I have found it has been the best investment yet. Although I am married, and we have a house of our own, you never stop being your parents babies-no matter how old. My Embrace2 helps not only my parents feel more at ease, but my husband, Daniel and his parents too, are comforted by knowing they’ll be alerted when a possible generalized tonic-clonic seizure occurs. This watch has also allowed me to still feel like I have my independence whilst still having people there to care for me. And it gives me hope that when we do have a family in the future, everyone will be safe. #### Look and Feel The watch comes in different colours. I have the pink one as I like bright colours. The colour helps it stand out but in a fashionable way, not in a ‘Hello look at me I have a disability’ kind of way. #### Pairs with Your Tech The watch also works alongside smart technology, so mine is paired to my iPhone. A paired device is needed, but it doesn’t have to be a smartphone–so don’t worry! As long as your phone or tablet is connected to the internet, you’ll be OK. My Embrace2 uses Bluetooth to connect to my phone. It was honestly the easiest thing to set up and I am not great when it comes to setting things up, Dan usually has to help me out. When the watch detects a possible convulsive seizure, it sends the data via an app, which then sends out text messages and calls to your selected caregivers. It is so dainty, and it communicates with you using its LED lights. A red X appears when Embrace is disconnected from your phone. This lets you, or if you have a child wearing the watch, know that they should move closer to the phone or connect to internet. The watch is also fast charging and it has a 48 hour battery life. I charge mine when I have someone around because I know either way that I am safe. #### Emily’s Seizures on Embrace2 Embrace has been an invaluable companion for me living with epilepsy, and it gives parents and loved ones reassurance, as well as yourself. The biggest change in my life is that those that care about me now feel much more comfortable allowing me to be by myself, knowing that if I have a seizure they know that they will be alerted and will know where I am with his GPS smart technology. They have more peace of mind while I’m sleeping, at work, walking. I don’t think about it much, but it’s become part of my everyday life now. I know that if something happens, I will be OK. I am lucky as I do have an Aura before my seizures but if I happen to have back to back seizures, then the watch is even more helpful. It stores all the data in the app and that is extra helpful if you have bad memory from seizures. A week or so after my Embrace was set up and had started recording my activity, I happened to have an appointment and I could show my Specialist Nurse the Embrace. She was so happy about this device. I was able to show her my seizure activity, and how long they had lasted. It is equally a diary for me. The Embrace2 is great at allowing me to workout safely and effectively, whilst equally keeping me safe. I love to do Yoga and Pilates, as well as go on walks. You can carrying on doing what you love with peace of mind for you and your loved ones. Along with eating properly, keeping hydrated and getting enough sleep, journaling is key to a healthy lifestyle. With the Embrace2 mate app, you can monitor your sleep and identify how many times you awaken in the night and what disturbed sleep you are getting. It also monitors how much walking, running and general activity you are getting and this encourages me to keep fit more than I was before. I highly recommend the Embrace2 watch. It has genuinely saved my life and helped my love ones no end. The funky features and the freedom it gives me, all help me keep not only a monitor on my seizures, but encouragement to stay on track with my healthy lifestyle. *This is not a paid advertisement.* --- **NEXT UP:** Be sure to check out the next post tomorrow at . ![author avatar](https://secure.gravatar.com/avatar/5523d28ae8bbaedc9d082d51d29393ca490379cd31464b99ab3c7d50a49362ac?s=300&d=mm&r=g) Emily Lawrence (Nee Donoghue) 25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England. Emily's Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10. Based in UK. [See Full Bio](https://livingwellwithepilepsy.com/author/emilyd) [ ](https://livingwellwithepilepsy.com/author/emilyd) **Categories:** About Epilepsy --- ### [Epilepsy Blog Relay: Improving Adherence Requires a Team Approach](https://livingwellwithepilepsy.com/aboutepilepsy/treatments/improving-adherence-requires-a-team-approach.html) **Published:** December 5, 2019 **Author:** Jessica K. Smith **Excerpt:** Medication "adherence is a crucial part of the journey toward seizure freedom, but for many people with epilepsy, taking their medications on schedule can be very difficult,” said Lucretia Long, APRN-CNP, Ohio State University Wexner Medical Center **Content:** **[![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/12/110317Lucretia_Long022-scaled-e1575513039325-268x300.jpg "110317Lucretia_Long022 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2019/12/110317Lucretia_Long022-scaled-e1575513039325.jpg)*****This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***.*** *This blog post was submitted by [Eisai](https://livingwellwithepilepsy.com/partners/eisai), the Presenting Sponsor of the November 2019 Epilepsy Blog Relay.* #### Lucretia Long, APRN-CNP Former Surgeon General C. Everett Koop once said, “Drugs don’t work in patients who don’t take them.” For people with epilepsy, treatment adherence is essential to optimal care and positive outcomes. Yet studies show that epilepsy patients don’t take their medications 30 to 60% of the time, which puts them at greater risk of breakthrough seizures. Missed medication doses are the number one cause of breakthrough seizures, which can cause significant injury. Nearly half of those with epilepsy report having a seizure [following one missed dose](https://www.epilapsey.com/patient). “Adherence is a crucial part of the journey toward seizure freedom, but for many people with epilepsy, taking their medications on schedule can be very difficult,” said Lucretia Long, APRN-CNP, Ohio State University Wexner Medical Center. “The reasons for this can be as varied as the patients themselves, so it’s important that we collaborate with our patients toward a comprehensive, realistic plan of action that fits medication into their daily routine,” said Ms. Long. #### Why is adherence such a big challenge? In a study of 661 adults with epilepsy, 66% reported taking more than four pills per day, and more than one quarter (28%) were taking 7 or more pills daily. With this type of regimen, some people simply forget which medications to take and when. Others have busy schedules that don’t leave enough time to take their medicine on schedule. Treatment side effects are also a common cause of non-adherence. For health care providers, it can be difficult to find the right mix of medications for each patient. No health care providers can predict in advance whether an anti-epileptic drug (AED) will be effective for an individual. Some people achieve seizure freedom with the first medication they’re prescribed, while others take much longer to find the treatment that’s right for them. Factors including lifestyle, age, other medical conditions, type of seizures and treatment history all play a role. Most people begin taking one AED at a low dose, and if that doesn’t work, the dose is increased. If that is still not effective or the person has difficulty with the side effects, the health care provider will typically switch to a different drug. With more than 20 AEDs currently approved by the FDA, patients may have to try many different drugs before finding the “right” one, and it may become necessary to combine several treatments. #### Adherence Strategies While occasional missed doses are inevitable, there are proactive steps patients and health care providers can take to help patients stay on track with their medication. Researchers have suggested that a more patient centered approach to epilepsy care, focused on open provider-patient conversations, would go a long way toward improving adherence. Trust is also key, as patients who report a trusting relationship with their health care provider and feel more comfortable discussing missed doses are more likely to be adherent. “Our goal is to get each patient on the lowest dose of medication with the simplest regimen as quickly as possible while minimizing side effects,” said Ms. Long “To achieve that, we need an honest, ongoing discussion about the person’s lifestyle, causes of missed doses, tolerance for side effects, and potential solutions that make sense for that individual.” **Additional strategies include:** - Simplified, manageable dosing, as adherence rates have been shown to be higher among those on once daily treatment regimens versus those requiring two or more daily doses. - A reminder system that will alert the patient when it’s time to take medication and/or get a refill, coupled with a plan from the treating provider for what to do when pills are forgotten - Medication containers, such as those with a separate compartment for each dose or that digitally display the amount of time elapsed since the container was last opened - Improving patients’ understanding of epilepsy to help empower them toward better self-management For more information on adherence and tips for discussing your treatment plan with your provider, watch episode #6 of the series [“Breakthrough TV” on Facebook Live](https://www.facebook.com/epilapsey/videos/255041188746851/). #### REFERENCES 1. Davis KL, Candrilli SD, Edin HM. Prevalence and cost of nonadherence with antiepileptic drugs in an adult managed care population. *Epilepsia*. 2008;49(3):446–454. 2. Samsonsen C, et al. Nonadherence to treatment causing acute hospitalizations in people with epilepsy: an observational, prospective study. *Epilepsia*. 2014;55(11):e125-e128. 3. Cramer JA, Glassman M, Rienzi V. The relationship between poor medication compliance and seizures. *Epilepsy Behav.* 2002;3(4):338-342. 4. Hovinga CA, et al. Association of non-adherence to antiepileptic drugs and seizures, quality of life, and productivity: survey of patients with epilepsy and physicians. *Epilepsy Behav*. 2008;13:316–322. 5. Paschal AM, Rush SE, Sadler T. Factors associated with medication adherence in patients with epilepsy and recommendations for improvement. *Epilepsy Behav.* 2014;31:346-350. 6. Ferrari CM. Factors associated with treatment non-adherence in patients with epilepsy in Brazil. *Seizure.* 2013;22(5):384-389. 7. Conrad P. The meaning of medications: another look at compliance. *Soc Sci Med.* 1985;20(1):29-37. 8. Institute for Quality and Efficiency in Health Care (IQWiG). Epilepsy in adults: treatment with medication. 2016. [Available online](https://www.ncbi.nlm.nih.gov/books/NBK343318/). Accessed Aug. 13, 2019. 9. Sarma AK, et al. Medical management of epileptic seizures: challenges and solutions. *Neuropsych Dis and Treat.* 2016;12:467–485. 10. St Louis EK. The art of managing conversions between antiepileptic drugs: maximizing patient tolerability and quality of life. *Pharmaceuticals*. 2010;3:2956-2969. 11. Cleveland Clinic. Epilepsy medications. [Available online.](https://my.clevelandclinic.org/health/treatments/16971-epilepsy-medications) Accessed Aug. 14, 2019. 12. Cramer JA, Wang ZJ, Chang E, et al. Health-care costs and utilization related to long- or short-acting antiepileptic monotherapy use. *Epilepsy Behav*. 2015;44:40-46. --- **NEXT UP:** Be sure to check out the next post tomorrow at . ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Treatments --- ### [Dr Ingo Helbig on Epilepsy, Genes, and Dravet Syndrome](https://livingwellwithepilepsy.com/aboutepilepsy/seizure-types-syndromes/dravet-syndrome/dr-ingo-helbig-on-epilepsy-genes-and-dravet-syndrome.html) **Published:** June 17, 2026 **Author:** Jessica K. Smith **Excerpt:** In honor of Dravet Syndrome Awareness Month we wanted to highlight the important advances being made in testing genes in the area of epilepsy. **Content:** [![Picture_1](http://livingwellwithepilepsy.com/wp-content/uploads/2015/10/Picture_1-e1445300327233-300x221.png "Picture_1 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2015/blog-relay/nov15-announcing-our-lead-bloggers.html/attachment/picture_1)In honor of Dravet Syndrome Awareness Month we wanted to highlight the important advances being made in testing genes in the area of epilepsy. ## About Dr. Helbig Ingo Helbig, MD, is an epilepsy genetics researcher, the Director of Clinical Research at ENDD, an attending Pediatric Neurologist in the Division of Neurology and the Director of Genomic Science at Children’s Hospital of Philadelphia (CHOP), and an Assistant Professor of Neurology at the Perelman School of Medicine, University of Pennsylvania. He is member of the Genetics Commission of the International League Against Epilepsy ([ILAE](http://www.ilae.org/Commission/genetics/)). He is blogging about epilepsy and genes on [Beyond the Ion Channel](http://epilepsygenetics.net/). ## Why genetics? Many types of epilepsies have a genetic contribution, and a community of clinicians, researchers, and families is heavily involved in identifying epilepsy-causing genes. Why? Dr. Helbig has tried to condense the five most important points into this article. ## Things are changing fast in Genetic Science Clinicians and researchers in the field of epilepsy are confronted with an ever-changing landscape of gene discovery. Epilepsies that were thought to be unexplained only two years ago now have a name and a gene attached to them. Dr. Helbig shares that he has met many people with epilepsy in the past who felt that genetics could not do anything for them and that their epilepsy was anything but genetic. However, as far as we know, genetic factors probably play a big role in why they have developed seizures and we might even know about specific genes that we could test for. It’s not clear if a genetics test will have answers for you, but Dr. Helbig encourages us to ask. [![spoton2013](http://livingwellwithepilepsy.com/wp-content/uploads/2015/11/spoton2013-1024x769.jpg "spoton2013 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2015/epilepsy-blog-relay/epilepsy-blog-relay-five-things-to-know-about-epilepsy-and-genes-2.html/attachment/spoton2013)*The initial X ray of DNA by Rosalind Franklin which led to the suggestion that DNA might actually be a double helix photo taken at Kings College London in 2012 In contrast to her peers Watson Crick and Wilkins Franklin did not receive a Nobel Prize* ## Here is what we know Today, we believe that most epilepsies without an obvious lesion or cause have a strong genetic component. This is true not only for severe epilepsies of childhood (the focus of my research), but also for many of the common epilepsies, up to the point that the community has renamed an entire group of common epilepsies from “Idiopathic Generalized Epilepsies” to “Genetic Generalized Epilepsies”. In 2015, we know more than 50 genes for human epilepsies and can probably explain 20-30% of severe epilepsies in children through genetic changes – if we test for them. ## Why look for genes? In some cases, finding a genetic cause makes a significant contribution to how we treat the epilepsy. For example, we know that in patients with a genetic change in a protein involved in glucose transport into the brain, the ketogenic diet can be a treatment. In patients with a genetic epilepsy called Dravet Syndrome, we know that we should avoid a common antiepileptic medication (lamotrigine). Also, we have learned that severe skin reactions to the antiepileptic drug carbamazepine is tightly linked to a few specific genetic markers. However, we always point out that treatment changes based on genetic findings are still very rare. It is currently a major focus in the field to be able to use a patient’s genetic information to tailor treatment, a field called precision medicine. We hope that future research will help us explain why some people have epilepsy, to predict the course of the disease and the response to treatment, and to understand the underlying mechanisms to help develop new strategies for treatment. ## Don’t fear your genes It is our experience that many people have a biased view towards genetics and that mentioning genetic causes of one’s disease is often fear-provoking. Throughout history, people with epilepsy have been stigmatized and accordingly, people were scared that these diseases may run in the family. This fear is still true today. Many people with epilepsy view a genetic contribution to their disease negatively and make decisions based on this. We have found in some of our research that people with epilepsy decide against having children because they fear that their disease may be inherited. We see genetics as a tool to empower people with epilepsy and their families. Knowing the cause of your epilepsy offers closure and helps connect families who are in a similar situation. Some examples include the [Dravet Syndrome Foundation](http://www.dravetfoundation.org/), the [International Foundation for CDKL5 Research](http://www.cdkl5.com), and the [SCN2A Family Foundation](http://www.scn2a.org/). Gene findings can really lead to empowerment. ## You may be asking one day The question about genetics, inheritance, and risk tends to come up at some point. This often happens unexpectedly when starting a family, when relatives have children, or when people with epilepsy hear about new findings in the media. Dr. Helbig’s advice: if you are in such a situation, please ask. There are highly qualified professionals out there who are able to counsel you and tell you about risk and if genetic testing may make sense for you. #### For more on epilepsy and genes You can find more information about epilepsy and genes on the following websites [Epilepsy Foundation](http://www.epilepsy.com/learn/epilepsy-101/epilepsy-inherited) [Rare Epilepsy Network](https://www.rareepilepsynetwork.org/) [Citizens United for Research in Epilepsy (CURE)](http://www.cureepilepsy.org/) You can also follow Dr. Helbig’s blog, [Beyond the Ion Channel](http://epilepsygenetics.net/). His blog is primarily targeted at clinicians and researchers, but they have found that many people with epilepsy and their families read our posts to stay informed about what is happening in epilepsy genetics. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Dravet Syndrome **Tags:** Epilepsy Awareness Month, Epilepsy Blog Relay, Epilepsy Genetics --- ### [Meet the boy behind the ketogenic diet charity, Matthew's Friends](https://livingwellwithepilepsy.com/aboutepilepsy/treatments/ketogenicdiet/meet-the-boy-behind-the-ketogenic-diet-charity-matthews-friends.html) **Published:** June 24, 2026 **Author:** Guest Contributor **Excerpt:** Matthew's mother first learned about the Ketogenic Diet when he was about 2 years old, but doctors hesitated to start him on it until he was 7. **Content:** **[![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/Picture1.png "Picture1 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/Picture1.png)**Matthew’s mother first learned about the Ketogenic Diet when he was about 2 years old, but doctors hesitated to start him on it until he was 7. ## Meet Matthew Williams Matthew Williams was born on the 8th September 1994 and at the age of nine months old he had his first seizure, this seizure lasted for about twenty minutes and was the start of a very long and traumatic journey for my family. At one stage Matthew was having prolonged bouts of [status epilepticus](https://www.ncbi.nlm.nih.gov/books/NBK430686/) and many nights I spent in hospital with him in intensive care not knowing whether he was going to live or die. I watched my son seize for hours in some cases and the future looked extremely bleak. Matthew was put on a lot of medication and the side effects from these started to become unbearable. In the beginning, when your child has a seizure you hold them and pray that they are going to be ok, that they are not going to die. But for us it got so bad that when Matthew had yet another prolonged attack, I would hold him and pray that he would die as I just couldn’t bear to see him suffer so much – then of course the guilt takes hold of you for even thinking such a thing. The more medication Matthew was put on, the worse his seizures and quality of life became. ## Ketogenic Diet I first found out about the [Ketogenic Diet](https://www.matthewsfriends.org/) when Matthew was about 2 years old, but when I asked Matthew’s Paediatric Neurologist about it, she said that the diet did not work, that it was unpalatable, the children were sick through it and medication was by far the better option and was made to feel guilty for even suggesting the diet being told “don’t you think your son is suffering enough without putting him through this diet as well”. I believed her and did what I was told like a good patient. I carried on with the merry-go-round of different medications, but nothing seemed to stop Matthew’s seizures and if anything they were making the situation a whole lot worse. Matthew was also assessed for brain surgery, but by this time he had so much scarring and damage to his brain because of all the seizures, that there was no way that they could carry out any kind of brain surgery that would be of any benefit to him. The drug merry-go-round went on for nearly six years and periodically in that time, I kept on asking for the diet and kept being refused. By this time, the film ‘First Do No Harm’ had been made highlighting the [Ketogenic Diet](https://livingwellwithepilepsy.com/2013/epilepsy-news/ketogenic-diet.html), but when I questioned the doctors, again, I was told it was ‘Hollywood hype’ and the diet really didn’t work that well and that this film did not give the details of all the terrible side effects that there were with the Ketogenic Diet and once again I was told that drugs were the best option. However, Matthew was having terrible seizures every day, numerous tonic clonic seizures, drop attacks, absences as well as myoclonic jerks so powerful that they would knock him off his feet. The doctors said that IF he made it to the age of 12 then he would probably need to be in a residential placement as we would not be able to deal with him living at home anymore. The family fell apart and I was now a single mother of not only a severely disabled little boy but also his younger sister Alice whose life was also a complete misery as everything had to revolve around her brother. When Matthew was 7 years old, on a yearly routine appointment with the same neurologist, I insisted that I wanted the diet because basically there was nothing else left to try. It was a choice of going through the same drugs he had tried before but in different combinations and more of them OR get him onto the ketogenic diet. There was no choice as far as I was concerned. I had to tick that box. The side effects of the medications were awful and his quality of life was so poor already that it really could not have got any worse for any of us. ## A ketogenic diet clinical trial Thankfully, [Professor Helen Cross OBE](https://www.gosh.nhs.uk/our-people/staff-z/helen-cross) and [Dr Elizabeth Neal RD ](https://ketocollege.co.uk/the-team/elizabeth-neal/)had just started their Ketogenic Diet Clinical trial at Great Ormond Street Hospital. So, we were referred over to see them, and Matthew was accepted to take part and within 2 weeks of starting the classical Ketogenic Diet. Matthew’s seizures had reduced by 90%, and within eight months of starting the diet he was off ALL medication! His quality of life improved dramatically. No longer were there terrible side effects from the medication. No longer did Matthew scream all day. No longer was Matthew aggressive to anyone around him by biting, hitting and pinching. No longer did Matthew try to knock over furniture in the house and generally disrupt the whole family. He was calmer, happier, more relaxed, sleeping and turned into a very loving little boy. I had finally got back what was left of my son, and my daughter could finally have some kind of sibling relationship with her older brother. It was a joy to watch. The fear that I was made to feel over the side effects of the diet were totally unfounded. Matthew experienced NO horrendous side affects to the diet whatsoever, Matthew was NOT sick all the time and the food was NOT disgusting and unpalatable. In fact in some cases, it was more difficult for Matthew’s sister Alice, as there was Matthew eating a nice Keto blueberry muffin and a banana milkshake for breakfast, whereas his sister was only allowed a bowl of cereal or some toast! Matthew was on one version or another of the diet for nearly six years and did just fine, the only reason he was kept on it for so long was because I was too scared to wean him off! ## Dravet Syndrome During this time, we also discovered that Matthew had [Dravet Syndrome](https://dravetfoundation.org/), a catastrophic epilepsy syndrome. It was with this diagnosis that we understood why some of the drugs had been so horrendous for him, as they were not suitable to be used with Dravet Syndrome, no wonder Matthew was so unhappy and suffered so much with life threatening seizures. We also know now that Dravet can respond very well to ketogenic therapy and that was the treatment he had needed but had been denied for so long. Instead he had been put on a cocktail of drugs that were not suitable for his condition. #### A keto break He was eventually weaned off the MCT ketogenic diet in August 2007 and the seizure numbers never increased from what they were when he was on the diet. The only slight problem we had was that they increased in length of time slightly. With that in mind, I discussed things fully with Professor Cross and we decided to try him back on a very small dose of Epilim, which is a drug recommended for Dravet. Although at the time it felt like I was taking a step backwards, understanding his diagnosis made it clear that he did need something to keep things under control to give him the best quality of life possible, be it drug or diet. We decided that as he had been on diet for 6 years, we would give him a ‘keto break’ for a year and try him on a little Epilim and then review after a year. Matthew is still on that keto break today at the age of 26 (and still living happily at home with me I hasten to add!) as he takes 600mg of Epilim twice a day and that was enough to bring the seizures he had left back down in length of time to about 40 seconds. This we could deal with and it didn’t affect his quality of life. He has no terrible side effects and for Matthew, this is HIS therapeutic dose of medication. If ever things changed and went downhill, then I would have no hesitation in putting him back onto ketogenic therapy and weaning off the medication. Monotherapy is always my goal for Matthew. ***Thank you to* Emma Williams, MBE, Founder/Trustee/CEO of Matthew’s Friends Charity Global and Director of Matthew’s Friends Clinics for sharing her family’s story.** ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Ketogenic Diet **Tags:** dravet, keto, Ketogenic Diet --- ### [A Father's Day Note to the Best Dad Ever](https://livingwellwithepilepsy.com/life-with-epilepsy/family/fathers-day-note-to-the-best-dad-ever.html) **Published:** June 1, 2026 **Author:** Guest Contributor **Excerpt:** Happy Father’s Day to you Dave, and also to all the great dads like you who put their child with special needs first. You are all great dads. **Content:** ## *[![Rachel Ablondi](http://livingwellwithepilepsy.com/wp-content/uploads/2016/05/215-300x225.jpg "Rachel Ablondi – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/portfolio/jun-17-rachel-ablondi-sponsored-lundbeck/attachment/215)*Rachel’s Story **“Laughing, Loving, Kissing and Hugging….”** You don’t hear that so much from other dads, but you say these words quite a bit! You wouldn’t have expected such uplifting warm words to come from a tough guy dad whose son is diagnosed with cerebral palsy and a severe seizure disorder, named [Lennox-Gastaut Syndrome](http://livingwellwithepilepsy.com/2015/blog-relay/epilepsy-blog-relay-diagnosis-of-lgs.html). Early on when I was pregnant with our first child our dreams of our future with our kids played out much differently. You’ve told me your dreams involved father and son fishing trips, hiking trips to the mountains, baseball practice and games and all that kind of manly stuff. You grew up this way, and frankly neither of us knew life any other way, until the day Andrew was born. Instead of dwelling on the “normal” child we lost, you focused on the perfect child that was now a part of our life. Andrew required extra care, but that didn’t stop you from focusing on bringing out Andrew’s smile and his laugh. Remember how you would bounce Andrew on our couch until he giggled out of control, and when you massaged his belly after his bath so he would gleefully yell, “EEEEEE!!” Hearing Andrew’s laugh and seeing him smile made all of his difficulties non-existent just for those moments in time. We all needed that. When Andrew was three we took hiking trips even though Andrew could not walk himself. I’ll never forget how you carried Andrew up the Jenny Lake Trail in the Grand Teton Mountains so that Andrew could feel the mountain air and see the tallest trees all for himself. Even though you were exhausted, what was important to you was that we were all together doing our favorite things no matter what obstacle was in our way. Not every dad takes his young son for walks, around and around, up and down hills in the neighborhood for hours just because his son liked the sensation to just keep on moving. Every summer there is no doubt that Andrew will be playing on the beach with his cousins. You wouldn’t have it any other way. You push that awkward wheelchair in the blazing sun through the deep sand just to get him there. Andrew may not play baseball, but you do make time for him to roll on his ball, one of his favorite things. Did you know you had such strength, did you know you had that kind of love inside for somebody else? You do, and you are the best dad. ## Dad’s Dedication Your dedication isn’t only to Andrew and our girls, but to me as well. You have given me the greatest support over these past 16 years. You are always available to listen and stand behind any decisions I make. For those scariest of times such as hospital stays when we are the most consumed with worry you hold down the fort at home so that I can be where I want to be, by Drew’s side. Our date nights are simple. They consist of hamburgers and a movie on a late Friday night, every single Friday night, and I wouldn’t have it any other way. We have made this time for each other because we know having this time helps us to be better parents. You make sure I have time away with my friends whether it is for a lunch date or a weekend getaway. I know taking care of four children by yourself is overwhelming, but you don’t complain. Andrew’s daily seizures are our biggest worry. That worry is with us no matter where we are. I know it’s hard for you to grasp that religiously giving medicines several times a day have little to no impact on the daily seizures that are interfering with our son’s brain. It is so difficult to not be able to help Andrew, when he needs help the most. I know you wish there was more we could do to help him. I wish that too. You fix everything, but somehow we can’t stop Drew’s seizures. You don’t let the unpredictability of these diseases get in the way of the love you have for your family, especially for your son. That is to be commended. ## Happy Father’s Day Happy Father’s Day to you Dave, and also to all the great dads like you who put their child with special needs first. You are great dads, the best of them all. Here’s to even more laughing, loving, kissing and hugging! *This post was written by Rachel Ablondi, who lives in Mount Airy, Maryland with her husband Dave. They are parents to Andrew who lives with Lennox-Gastaut syndrome, Amelia, Ava and Jenna.* ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Family **Tags:** Fathers Day, special needs dad --- ### [Traveling with Epilepsy: Does air travel impact seizures?](https://livingwellwithepilepsy.com/life-with-epilepsy/travel/traveling-epilepsy-air-travel-altitude-lower-seizure-threshold.html) **Published:** June 29, 2026 **Author:** Maureen Knorr **Excerpt:** Recently, this author met others living with epilepsy who said air travel had caused an increase in seizures. Doctors said it was most likely stress related. **Content:** [![](http://livingwellwithepilepsy.com/wp-content/uploads/2013/12/IMG_3072-1024x764.jpg "On top of the world – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2014/personal-epilepsy-stories/anonymous-story-good-life-despite-epilepsy.html/attachment/img_3072) ## Air Travel Recently, I met others living with epilepsy who said air travel had caused an increase in their seizures. When speaking to their doctors, they had also been told it was most likely stress related. Even with that explanation, most felt there could be something else to trigger the increase. While there is no evidence that the likelihood of seizures increases at higher altitude, I believe it isn’t far-fetched to deduct a change in altitude could lower seizure threshold. Here’s what I learned while researching. #### Epilepsy and Travel: [Managing medications while traveling](https://www.epilepsy.com/learn/managing-your-epilepsy/adapting-plans-travel/managing-medications-while-traveling) [Air Travel and Seizure Frequency](https://www.seizure-journal.com/article/S1059-1311(06)00061-6/fulltext) [Neurologic events during commercial flights](https://n.neurology.org/content/58/12/1739) [Traveller’s Handbook from IBE](https://www.ibe-epilepsy.org/wp-content/uploads/2017/08/IBE-TravelHandbook-2017.pdf) ## Lower Oxygen Levels The WHO reports aircraft cabins are pressurized at lower air pressure than sea level. The typical cruising altitude ranges 36,000 – 40,000 feet; air pressure in the cabin is equivalent to the outside air pressure at 1,800 – 2,400 feet. This low air pressure decreases the oxygen level in your blood, a physiological change. Decreased oxygen in blood can lead to hypoxia, the lack of oxygen in your tissue, organs, and brain. Severe hypoxia is a known flight risk and has also been linked to triggering seizures. **Low oxygen levels won’t harm the average flyer, but what about those predisposed to seizures?** I wonder if it’s possible that the physiological changes that occur with lower air pressure can increase seizure risk. It’s only in the past 10 years that we learned people with cardiovascular problems have increased risks with air travel. Imagine what more will discover 10 years from now! ## Epilepsy information is constantly evolving By way of example, over 20 years ago, I told my neurologist that before menstruation, my number of seizures increased. I had never been told (or read) that my monthly cycle could be a trigger, but my gut feeling said it was. My doctor assured me that menstruation was *not* a trigger and the increase in my seizures was mostly likely stress related. She stuck to the facts, as doctors do. 20 years later, The Epilepsy Foundation released that 50% of female patients of childbearing age, are likely to have an increase in seizures related to the hormonal changes that occur with menstruation; a physiological change. There is even a name for it: Catamenial Epilepsy. This article is not to discredit my doctor’s knowledge, but to show doctors are limited to what is scientifically proven at that given time. Our knowledge of epilepsy is constantly evolving. **RELATED:** [**Traveling with Epilepsy: A Pharmacy in Croatia**](https://livingwellwithepilepsy.com/2015/traveling-with-epilepsy/traveling-with-epilepsy-a-pharmacy-in-croatia.html "Traveling with Epilepsy: A Pharmacy in Croatia") ## Sharing Air Travel Experiences Hearing stories of epilepsy patients consistently having seizures after air travel has helped me appreciate how lucky I am. I’m so thankful that overall I am a healthy person and that epilepsy doesn’t hinder my travels. Unfortunately, for many epilepsy patients this does not ring true. This also reminds me how far away we are from truly understanding epilepsy. As mentioned before, our knowledge of epilepsy is constantly evolving. The more we question, the more likely researchers will want to provide an answer. ## Your Turn #### Has flying impacted your seizures? Share your experience in the poll below. ![author avatar](https://secure.gravatar.com/avatar/21dd1cb76084b50fb7cccc4f2b6135cd43d1c082e5b039d6d4a99606803dc749?s=300&d=mm&r=g) Maureen Knorr I’m Maureen, and I have epilepsy. You’re probably reading this because either you have epilepsy, or you love someone that has epilepsy. Whatever sparked your curiosity, I am happy to be sharing my experiences with you. From having seizures in foreign countries to begging pharmacists that don’t speak English for medication, I can definitely say that it's been an interesting journey. Hopefully reading about my ups and downs, and my everyday and not so everyday adventures will inspire you too! Welcome to my life of living well with epilepsy! [See Full Bio](https://livingwellwithepilepsy.com/author/maureen-knorr) [ ](https://livingwellwithepilepsy.com/author/maureen-knorr) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://maureenknorr) **Categories:** Travel **Tags:** epilepsy, Epilepsy Awareness, Living Well With Epilepsy, seizures, Travel --- ### [Henry’s Fight with Dravet Syndrome](https://livingwellwithepilepsy.com/aboutepilepsy/seizure-types-syndromes/dravet-syndrome/henrys-fight-with-dravet-syndrome.html) **Published:** June 10, 2026 **Author:** Guest Contributor **Excerpt:** This family discovered after additional seizures and a genetic report that their son, Henry, has Dravet Syndrome. That's when the entire family's life changed. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/03/nate-300x300.jpg "nate – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/henrys-fight-with-dravet-syndrome.html/attachment/nate)This family received a genetic report back which suggests that their son Henry has [Dravet Syndrome](https://dravetfoundation.org/) in one of his genes. They requested to share their story. ## The Beginning February 26 will be a day etched in my brain forever. We had just collected Henry from his childminder. It was quite rare for his mum and I to both be able to collect him together and then collect his sister from school; we both finished work at a similar time on this particular day so thought it would be nice to do it together. We arrived at Henry’s childminder’s house and he had just woken up from a deep sleep. As I lifted him up, his knee “jerked”. Quite strange, I thought. But I thought it was him still waking up fully. He was just 11 months old so he couldn’t communicate how he was feeling. I strapped him into his car seat and we made the 5 minute journey to his sister’s school. I parked and something just told me to look in my rear view mirror. To this day, I don’t know what that ‘sign’ was. I just did. ## A Scary Experience His car seat was rear facing so I couldn’t see his face, however, his leg was dangling over the edge and shaking. His mum and I quickly got out of the car and she unstrapped him. He was violently, stiffly, shaking in her arms. What is happening to our boy? We ran with him into the school reception. I immediately called for an ambulance. In the reception area was an off-duty midwife who announced to us he was having a seizure of some sort. The paramedics were there within minutes and started to work on him. “Does he suffer from seizures? Does he have epilepsy? Has he had this before?” So many questions. No, no, no. Mum and Henry were whisked to the hospital in the ambulance. I followed in the car. Weirdly, I was concerned about getting a ticket so wanted to drive up. Deep down, I couldn’t watch my son go through whatever it was he was going through. I have zero recollection of driving to the hospital. No idea. All I remember was breaking every speed limit; I arrived before the ambulance. (Do not break speed limits, kids. It’s foolish and dangerous.) I parked right outside the emergency department. This time I didn’t care where I was parked. Shortly after, Henry arrived and he was taken straight into the resuscitation room. He was still fitting. Doctors and nurses surrounded our boy. His mum and I directed to a parent’s waiting room; a small room with a coffee table in the middle. We had a lovely nurse come in with updates and offers of tea. (It’s a British thing. Tea makes everything better.) Finally, he stopped. We were allowed to see him. We spent 5 days in hospital from that moment and he was diagnosed with a Febrile Convulsion – fairly common in children Henry’s age; when there’s a temperature spike, your body goes into shock. One month later, Henry celebrated his 1st birthday. All was fine with the horror of 30 days before being put behind us. But, in my mind, something still didn’t feel right. I felt I would often see him jerk. But then he would smile and just go about his day. I must have been imagining it. ## More Seizures Fast forward a few months… we are sitting on the couch and then Henry suddenly slides down before going into another seizure. NOT AGAIN. Yes. Again. This time, no temperature. This is not a Febrile Convulsion. Paramedics called, whisked to hospital, into resuscitation. Another prolonged seizure. We needed answers. Another hospital stay. We were booked in for an EEG. From that, it was confirmed he had Epilepsy. Our lives just changed forever. Fast forward 3 years; Henry has had multiple hospital admissions, including stints in ICU, more tests than I care to remember, prescribed and tried on almost every AED and become best friends with all the staff at the local hospital. (Seriously, they’re incredible.) ## A Diagnosis of Dravet Syndrome We’ve recently had a genetic report back which suggests that Henry has Dravet Syndrome. With Dravet comes a high risk of [SUDEP (Sudden Unexpected Death in Epilepsy)](https://livingwellwithepilepsy.com/sudep "SUDEP"). We all know how petrifying that sounds. That’s why I’ve dedicated the last 3 years into knowing as much about epilepsy as I possibly can. I’ve made friends within the community – friends that really have gotten me through the rough and tough times – advocated for others. Henry is such a special little boy who spends most of the day laughing and smiling. He’s loved by all and has touched people literally around the world. But this battle will forever be ongoing. I want to do more to help others. I want to play a part so one day, a parent doesn’t have to feel as scared as I do every single day. I want to raise awareness. I want to raise money for research. Anything. To everyone affected by this condition, [you’ve got this](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/5-tips-for-dealing-with-an-epilepsy-diagnosis.html). We’re all in this together. Let’s not just play the game anymore, let’s change the way the game is played. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Dravet Syndrome **Tags:** Dravet Syndrome, Grand Mal, pediatric epilepsy --- ### [Father's Day: It's time to say thanks](https://livingwellwithepilepsy.com/life-with-epilepsy/family/fathers-day-its-time-to-say-thanks.html) **Published:** June 22, 2026 **Author:** Jessica K. Smith **Excerpt:** On this Father's Day I would like to take a minute to publicly say thank you for all my dad has done for me. **Content:** On this Father’s Day I would like to take a minute to publicly say thank you for all my dad has done for me. Here are a few photos to show how dad has always gone above and beyond for me and the rest of my family. Dad has always been concerned about my education. [![photo(5)](http://livingwellwithepilepsy.com/wp-content/uploads/2015/06/photo5-1024x765.jpg "photo(5) – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/06/photo5.jpg) He made sure I graduated high school and college despite the challenges we faced as a family because of my epilepsy. [![photo(7)](http://livingwellwithepilepsy.com/wp-content/uploads/2015/06/photo7-1024x765.jpg "photo(7) – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/06/photo7.jpg) Dad always kept me in the best finery. (mom was in charge of the accessories!) [![photo(6)](http://livingwellwithepilepsy.com/wp-content/uploads/2015/06/photo6-1024x765.jpg "photo(6) – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/06/photo6.jpg) Dad is still always up for a good laugh. [![photo(9)](http://livingwellwithepilepsy.com/wp-content/uploads/2015/06/photo9-1024x765.jpg "photo(9) – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/06/photo9.jpg) Of course he always kept us buried in presents at Christmas time. [![photo(12)](http://livingwellwithepilepsy.com/wp-content/uploads/2015/06/photo12-1024x765.jpg "photo(12) – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/06/photo12.jpg) [![photo(10)](http://livingwellwithepilepsy.com/wp-content/uploads/2015/06/photo10-1024x765.jpg "photo(10) – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/06/photo10.jpg) But the best gift Dad has given me is his love and dedication to my own little one. [![photo(13)](http://livingwellwithepilepsy.com/wp-content/uploads/2015/06/photo13-1024x765.jpg "photo(13) – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/06/photo13.jpg) Thank you Dad. I love you. Happy Father’s Day. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Family **Tags:** Fathers Day --- ### [Bryan on Being a Father and Living Well With Epilepsy](https://livingwellwithepilepsy.com/life-with-epilepsy/family/bryan-on-living-well-with-epilepsy.html) **Published:** June 15, 2026 **Author:** Guest Contributor **Excerpt:** Bryan had his first seizure at 16. He didn't expect to “live well with epilepsy,” in fact, he hoped to live well in denial. **Content:** ## [![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/11/Farley-Experience-9883.jpg "Bryan Farley Photographs Reflection in San Antonio – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2021/11/Farley-Experience-9883.jpg)Bryan’s Story I am 53, and I have lived with epilepsy for 37 years. Some days, I feel as though I am starting to get the hang of this epilepsy thing, but when I had my first seizure at 16, I did not expect to “live well with epilepsy.” For most of the next 37 years, I had [hoped to live well in denial](https://livingwellwithepilepsy.com/2021/epilepsy-blog-relay/jun-21-ebr-posts/adjusting-to-epilepsy-diagnosis.html). Then I became a father and lost my dad. I needed to change, but the lifelong habit of living in denial has been difficult to overcome. ## On being Dad My two children are both teenagers. I have a 15-year-old son and a 17-year-old daughter. I was about their age when I had my first seizure. They have always known that I have epilepsy, and now we also share a global pandemic. This might not seem relevant, but I think my epilepsy experience has helped my family live through this unusual period. During the last 35 years, I have developed coping skills and perspective. My children have learned some too. It wasn’t always this way. ## On the value of people with disabilities In the months before my first child was born, I started to notice how our culture devalued people with disabilities. I would hear people say, “I don’t care if it is a boy or a girl, as long as…” I had internalized the messages too, and if I wanted to become a great father, I would need to change my view of myself, and others like me. I did not grow up with role models for living well with epilepsy, nor did I always have great role models for being a good father. Six months after my first child was born, my father [committed suicide](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/suicide-and-the-stigma-of-epilepsy.html). I wish there were a good way to say this, but I do not know if I would have learned how to live openly with epilepsy if my dad hadn’t died this way. I knew that his death was going to be a shock, because I had been managing stress my whole life. Stress could cause seizures. Lack of sleep could cause seizures. I needed to face everything fast, so I did. Some people thought that I was brave or kind or compassionate, but truthfully, I did everything to save my life, because epilepsy was worse with all the stress. And then, epilepsy got better. ## On being an Educator, Advocate, Artist and Father Living with epilepsy can still be difficult because I demand more from others. I reject the idea that we are merely patients, and the researchers are the experts. As an educator, I notice when people with disabilities are excluded from conversations about us. As a photographer, I want to change how imagery reflects how we are viewed. As a father, I just want to be a good dad. I am not less angry; just more focused. And, most days, that is living well. ## About the Author Bryan Farley is a photographer in the San Francisco Bay Area. He has lived with epilepsy for years and continues to share his experience in support of the epilepsy community. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Family **Tags:** Fathers Day --- ### [On Being a Dad to a Child with Epilepsy](https://livingwellwithepilepsy.com/life-with-epilepsy/family/dad-to-child-with-epilepsy.html) **Published:** June 8, 2026 **Author:** Jessica K. Smith **Excerpt:** On Dave's blog, Epilepsy Dad, he shares his experiences as Dad to a child with epilepsy. Check out what he learned this Fathers Day. **Content:** ## ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/06/IMG_6336-e1529673013800-249x300.jpg "IMG_6336 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/parenting/ieps-504-plans-and-the-need-for-epilepsy-awareness-in-education.html/attachment/img_6336)*****Epilepsy Dad** Dave is the father of an energetic, baseball(and hockey)-loving son who has refractory epilepsy. On Dave’s blog, [Epilepsy Dad](http://epilepsydad.com), he shares his experiences as Dad to a child with epilepsy in hopes that his words help other people who are on a similar journey. By sharing his story, Dave hopes to reach out to special needs families to let them know that they are not alone. Below is an excerpt from one of his latest posts: #### [Excerpt from Epilepsy Dad](https://www.epilepsydad.com/epilepsy/what-it-means-to-be-an-epilepsy-dad/) Being a father is the most amazing experience of my life. It’s also the hardest, most fun, most frustrating, most rewarding, and scariest experiences of my life. I feel the pressure to give my son a very different childhood than I had and, most days, I feel ill-equipped to do so, but I am trying. Adding to the challenge of just being a good father is being the father to a child with special needs. Even if there were a manual called *How To Be a Good Dad*, it’s the equivalent to trying to read that book in the dark. Every intention, every plan, every expectation went out the window and I had to start again looking through a very different lens. [Read the full story ](https://www.epilepsydad.com/epilepsy/what-it-means-to-be-an-epilepsy-dad/) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Family **Tags:** Fathers Day --- ### [5 tips for dealing with an epilepsy diagnosis](https://livingwellwithepilepsy.com/epilepsy-stories/5-tips-for-dealing-with-an-epilepsy-diagnosis.html) **Published:** July 8, 2021 **Author:** Emily Lawrence (Nee Donoghue) **Excerpt:** Many of us will face a devastating diagnosis and some will even face life with a chronic illness, like Epilepsy. Here are a few tips to help. **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/10/birthday-24-240x300.jpg "birthday 24 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/5-tips-for-dealing-with-an-epilepsy-diagnosis.html/attachment/birthday-24)***Life is unpredictable. Most of us will face a devastating diagnosis at some point—whether a chronic illness, like Epilepsy; an acute illness like an infection; or even something that eventually claims your life, like a heart attack. One of the many challenges of dealing with a life-changing diagnosis is that you might not know how it will affect you. When I was diagnosed with Epilepsy, it wasn’t ‘Serious’. We got on with it, I had fits, they got controlled, I carried on. We carried on. It didn’t consume us. But as I got older, the seizures got worse and more complex. There is simply no way to predict, and for some people, the uncertainty is almost as bad as the diagnosis itself. Here I will be writing a number of strategies that I think can help you make it through the ensuing challenges of diagnosis. #### 1. Find a Support Group Join a support. Group. Something we didn’t have access to when I needed one the most. My friend, Gurvinder, and I set up a support group because not only did we need one, but we knew other people did too and we wanted to give back something we needed a long time ago. Doctors give information that’s professional and scientific, but not always something you need to hear. You want people who understand you, people who have experienced it not studied it. A support group offers you a judgment-free space to talk, and the chance to learn about others’ experiences. Doctors are so short on time, you can’t open up like you can with friends. You can’t really sit and cry like you could in a group. Join a support group as early as possible. If you’re anxious about doing so in person or don’t have a lot of time, consider an online group or a message board instead. #### 2. Ask for Help Unlike the support group, the help was there for me but I didn’t ask for it. If people ask what they can do or volunteer help, don’t turn them away, don’t isolate yourself. Accept it. Diagnosis is scary, any condition is scary no matter how new you are to it. Whether you have one friend or 100, one family member or 60-they care, and they want to help. Write a letter, text, call, or speak up. You will be surprised how many people will be there at a drop of a hat for you. --- Related: [Top 4 side effects and how to deal with them](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/jun-18-ebr-posts/living-with-side-effects.html) --- #### 3. Take Control of Your Health I don’t have to write a lot here, other than look after yourself. Eat properly, drink water, exercise as much as you can, and have “you” time. Read, sleep, relax. Take up a hobby like music, photography, writing. You can’t live life properly If you don’t put you first. A clear mind is a healthy mind. #### 4. Live With Some Uncertainty It sounds hard, but it is possible. No matter how much [treatment](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/jun-18-ebr-posts/living-with-side-effects.html) you undergo, how many healthy lifestyle changes you make, or how much support you have, you cannot control the ultimate outcome of your condition. It’s something that has taken me 13 years to come to terms with, but I have done. I could have a seizure at any second, and I couldn’t accept that. I was convinced I would lose my job every time I had a seizure-did I? No. *It’s true this is not the case for everyone.* Epilepsy is unpredictable, but so is life. No matter how healthy you are, anything could happen and we have to learn to live with that without being consumed by it. The difficulty that you have is that you are trying to get certainty in an uncertain world. Rather than think about this in terms of probabilities, you may want to think about possibility. I do anyway. But it is impossible to rule out possibility. It’s always possible that you could end up in hospital, but anyone is open to that. You could fall and break a leg walking to work. Anything is possible. Ruling out possibility is impossible. #### 5. Take your power back Many people begin their journey feeling hopeful, only to feel crushed when a new exercise plan and miracle diet fail to cure them. Ultimately, you must find ways to live with the lack of control. The right strategy varies for everyone, but many people have excellent luck with meditation and yoga. Meditation helps you live in the present moment while steadily working to ease your anxious mind. Self-care is how you take your power back. Live each day as it comes, I mean it. ![author avatar](https://secure.gravatar.com/avatar/5523d28ae8bbaedc9d082d51d29393ca490379cd31464b99ab3c7d50a49362ac?s=300&d=mm&r=g) Emily Lawrence (Nee Donoghue) 25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England. Emily's Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10. Based in UK. [See Full Bio](https://livingwellwithepilepsy.com/author/emilyd) [ ](https://livingwellwithepilepsy.com/author/emilyd) **Categories:** About Epilepsy, Epilepsy Stories, Jun 21 EBR Posts **Tags:** epilepsy diagnosis, self-care --- ### [Shining a spotlight on Dravet Syndrome](https://livingwellwithepilepsy.com/aboutepilepsy/seizure-types-syndromes/dravet-syndrome/shining-spotlight-on-dravet-syndrome.html) **Published:** June 3, 2026 **Author:** Jessica K. Smith **Excerpt:** In honor of Dravet Syndrome Awareness Month its a great time to highlight this rare epilepsy syndrome that is difficult to diagnose and currently has no cure. **Content:** [![Dravet's Syndrome](https://livingwellwithepilepsy.com/wp-content/uploads/2026/05/a-joyous-moment-of-a-mother-playfully-embracing-her-smiling-baby-indoors.-27788182-scaled-e1779303276304-475x600.jpg "Photo by Hannah Barata – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/photo-by-hannah-barata)In honor of Dravet Syndrome Awareness Month we wanted to help shine a spotlight on this rare epilepsy syndrome. Since Dravet syndrome is so rare we felt it was important to dedicate a post to raising awareness on this devastating form of epilepsy. ## **What is Dravet Syndrome?** Dravet Syndrome is sometimes referred to as severe myoclonic epilepsy of infancy (SMEI). It appears during the first year of life with frequent febrile seizures – fever-related seizures that, by definition, are rare beyond age 5. According to the Dravet Foundation, “Dravet syndrome is an intractable developmental and epileptic encephalopathy that begins in infancy and proceeds with accumulating symptom burden that significantly impacts individuals throughout their lifetime. Dravet syndrome is a rare disease, with an estimated incidence of 1:15,700. The majority of patients carry a mutation in the sodium channel gene *SCN1A*.” Children with Dravet Syndrome typically experience poor development of language and motor skills, hyperactivity, and difficulty relating to others. ## **What can you do?** Seizures in Dravet Syndrome are difficult to control, but can be reduced by anticonvulsant drugs. A ketogenic diet, high in fats and low in carbohydrates, can also help. For more on the Ketogenic Diet and how it is being applied read the story from the *New York Times* called [Epilepsy’s Big Fat Miracle](http://www.nytimes.com/2010/11/21/magazine/21Epilepsy-t.html) or if you don’t have a NYTimes subscription, here is a link to open access info: ## **What can happen?** As children with Dravet Syndrome get older, their decline in cognitive function stabilizes, and in many, it improves slightly. However, most teenagers with Dravet Syndrome are dependent on caregivers. ## **What research is being done?** Study of the genetics associated with Dravet Syndrome and related disorders is being conducted and is expected to lead to the development of effective therapies. For details on how the $14 Million in research funding has been spent by the Dravet Syndrome Foundation visit: ## **For more information on Dravet Syndrome** For more information on Dravet Syndrome here are some resources: ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Dravet Syndrome --- ### [Epilepsy Blog Relay™: Nicholas the Brave](https://livingwellwithepilepsy.com/aboutepilepsy/seizure-types-syndromes/rare-epilepsy/epilepsy-blog-relay-nicholas-the-brave.html) **Published:** June 29, 2017 **Author:** Guest Contributor **Excerpt:** Nicholas was diagnosed with infantile spasms at 6 months of age. Doctors were able to control his seizures but recently they have started back up. **Content:** [![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/01/Nick-300x300.png "Nick – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=15243)**This post is part of the [Epilepsy Blog Relay™](http://livingwellwithepilepsy.com/epilepsy-blog-relay) which will run from June 1 to June 30, 2017. Follow along!** #### Nicholas’ Story Nicholas is 7 years old and was diagnosed with infantile spasms around 6 months of age. He had 50 to 60+ seizures a day for about 2 1/2 years straight. The doctors tried every possible medication available at the time to control them with no luck. Finally after a tough 3 years and medication, he was seizure free. That was until about 6 months ago when the seizures came back. He was hospitalized and we were told that they have come back in a different form. We were told this could happen but had hoped it wouldn’t. Everything had been going so well but they kept coming back. Unfortunately, the seizures have set him back developmentally. He doesn’t eat solid food and his main source of nutrition is a pediatric nutrition drink. He lost the ability to eat solid foods when he was put on the ketogenic diet to stop the seizures. Since then he will not touch food. Communication is also a problem. Nicholas is about one year old developmentally. His speech is very limited and he does not talk much. He can say mommy and daddy and knows his colors. He is learning but has a long road ahead. He also suffers from cerebral palsy on his right side… doctors don’t know when or how this happened either but it limits his function on his right side. Throughout all this he smiles every day, loves music, NASCAR, WWE, monster trucks and watching his brother play hockey. We have learned a lot as a family and dealing with this disease. It’s not easy, but if Nicholas can smile so can we. We never know what tomorrow will bring and making plans is hard to do, but my intention is to raise awareness and let others know that they are not alone. We have been there and are still there. We will not give up. Help us raise awareness and share Nick’s story! ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Rare Epilepsy **Tags:** Epilepsy Blog Relay, family, Infantile Spasms --- ### [Do Pesticides Have an Impact on Epilepsy?](https://livingwellwithepilepsy.com/life-with-epilepsy/food/do-pesticides-have-an-impact-on-epilepsy.html) **Published:** April 23, 2022 **Author:** Jessica K. Smith **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/04/64867948100__11D19A96-819D-4492-B4A0-51E68C64B814-2-768x1024.jpg "64867948100__11D19A96-819D-4492-B4A0-51E68C64B814 2 – Living Well With Epilepsy")my little gardenYou may have heard about the [Dirty Dozen](https://www.ewg.org/foodnews/dirty-dozen.php) and the [Clean Fifteen](https://www.ewg.org/foodnews/clean-fifteen.php). What I didn’t realize is the [Environmental Working Group (EWG)](https://www.ewg.org) updates this list each year. And that there may be a link between epilepsy and pesticides. Some of you know that I’ve been spending a little more energy focusing on [nutrition](https://livingwellwithepilepsy.com/2022/personal-epilepsy-stories/nutrition-and-epilepsy.html) (not much mind you – just a little – had pizza and ice cream last night). I’m late to the game on this one but I thought I’d share anyways. #### What the heck do pesticides have to do with epilepsy? Sure nutrition is on my mind, but honestly what do pesticides have to do with epilepsy? After a quick google search I found research that shows there may be a [link between pesticides and epilepsy.](https://pubmed.ncbi.nlm.nih.gov/30018027/) According to a study published in the journal Neurotoxicology, “An increased risk of epilepsy was observed in the population living in areas of high vs. low use of pesticides (OR: 1.65; p < 0.001). Although this study was exploratory in nature, the results suggest that **environmental exposure to pesticides might increase the risk of having epilepsy**.” After digging a little further I found a site called [beyondpesticides.com](https://www.beyondpesticides.org/resources/pesticide-induced-diseases-database/brain-and-nervous-system-disorders) that reflects the current research on epilepsy and pesticides. It is also worth noting that the NIH is developing an area of [neuroscience to focus on exposure biology and the exposome.](https://www.niehs.nih.gov/research/supported/exposure/bio/index.cfm) I’ve included the link incase you are interested in learning more about it. #### What is the Dirty Dozen? The Dirty Dozen is a phrase that refers to 12 “dirty” crops that farmers use the most pesticides on. The list is generated by EWG and utilizes data from the United States government’s [Pesticide Data Program report](https://www.ams.usda.gov/datasets/pdp), a pesticide residue monitoring system enacted back in 1991. Every year, a new report is released and while most of the information stays the same, sometimes crops come in at different numbers depending on varying pesticide residue levels. #### The 2026 Dirty Dozen List - Strawberries - Spinach - Kale, Collard and Mustard Greens - Nectarines - Apples - Grapes - Bell and Hot Peppers - Cherries - Peaches - Pears - Blackberries - Potatoes - Blueberries - Green Beans #### Buying organic vs washing According to the [Dr. Sears Wellness Institute](https://www.drsearswellnessinstitute.org/blog/buying-organic-dirty-dozen/), “the pesticides persisted on fruits and vegetables when tested by USDA – even when they were washed and, in some cases, peeled. Buying organic produce helps to avoid these pesticides that can be harmful to your health.” Thomas Galligan, Ph.D., a toxicologist with the EWG explains that the Dirty Dozen is not a list of fruits and vegetables to avoid. Rather, the EWG recommends that consumers choose [organic](https://www.verywellfit.com/nutrition-basics-overview-4581855) versions of these twelve “Dirty Dozen” items, if available and affordable. But if you can’t access or afford organic versions of these foods, the conventionally-grown ones are safe and healthy too. As we all know living with epilepsy can impact the financial wellness of a household and buying organic is not always possible. But I believe it is important to at least have the information available in a practical and balanced fashion. #### What is the Clean 15 Similarly, the Clean Fifteen refers to the fifteen crops that use or retain the least amount of pesticides. Similarly it is important to wash these fruits and vegetables when possible though buying organic is less urgent. #### The 2026 Clean 15 List - Avocados - Sweet Corn - Pineapple - Onions - Papaya - Sweet Peas - Asparagus - Cauliflower - Kiwi - Cabbage - Mushrooms - Bananas - Mangoes - Watermelon - Carrots #### Organic Gardening And you may also know that I have a [small garden that I love to putter around in](https://livingwellwithepilepsy.com/2022/personal-epilepsy-stories/on-recovery-days.html). Recently, my husband spent time out in the garden spreading stone between my raised beds so I don’t have to expend so much energy fighting off the weeds. And I sat around watching them (I’m still a little frustrated by my lack of energy these days) but super grateful to have the help. Their efforts mean I can grow my spinach, blueberries, potatoes and peppers in my own garden from seed! That cuts my list down to the dirty seven. This is particularly important since I’m already dealing with epilepsy and cancer. And really who wants to add to that list? Now if only I could keep the birds and squirrels from eating my blueberries!! I’d love to hear your thoughts on food and epilepsy. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Food **Tags:** epilepsy and pesticides, gardening, nutrition, organic, pesticides --- ### [Epilepsy Blog Relay: Meet Torie Robinson of Epilepsy Sparks](https://livingwellwithepilepsy.com/epilepsy-news-and-research/epilepsy-research/torie-robinson-of-epilepsy-sparks.html) **Published:** March 1, 2023 **Author:** Jessica K. Smith **Excerpt:** If you haven't met her yet, Torie Robinson is a charismatic and engaging podcast host on her show, Epilepsy Sparks. Check out one of her recent episodes on "Sex and Epilepsy." **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/02/Torie-Robinson-Epilepsy-Sparks.jpg "Torie-Robinson-Epilepsy-Sparks – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2023/02/Torie-Robinson-Epilepsy-Sparks.jpg) ## Torie Robinson Torie Robinson is a charismatic and engaging podcast host on her show, [Epilepsy Sparks Insights](https://www.epilepsysparks.com/), where she features global leaders where she features global leaders in epileptology & neuroscience, plus, is CEO of [Epilepsy Sparks](https://www.epilepsysparks.com/ "https://www.epilepsysparks.com/") which bridges the gap communication gap between clinicians, scientists, and families through education. Torie is also an international keynote speaker: employing her personal and professional knowledge and experience of **epilepsy**, **mental health**, and **diversity & inclusion** to speak candidly on what it means to be different, how her **illnesses/disabilities** (and **abilities**!) affect her, affect others, and how organizations can be both inclusive and have an impact. ## Epilepsy Sparks Podcast Here’s one of her recent episodes: ## Epilepsy Leadership Torie has had both [**brain surgery**](https://livingwellwithepilepsy.com/2022/epilepsy-blog-relay/epilepsy-blog-relay-life-changing-decisions.html "Epilepsy Blog Relay: On life changing decisions and brain surgery") for her **epilepsy** and stints in **psychiatric hospitals** due to [**mental health** ](https://livingwellwithepilepsy.com/2017/livingwell/rachel-tackles-the-mental-health-issue.html "Rachel tackles the mental health issue")illnesses. Through her own lived experience, and her deep connection to the scientific community, Torie provides insight into the space where both psychiatric and neurological illnesses intersect. With significant experience in the healthcare, education, financial and banking sectors, Torie communicates within these industries and relating professionally, internationally, culturally, and personally. She has held leadership roles in NHS, Epilepsy Action, and EpiCare. Check out our link to the [Epilepsy Glossary](http://bit.ly/3WUhRZK) she developed, which has been endorsed by the **Epilepsy Nurses Association (ESNA)** ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Research **Tags:** #epilepsyglossary, #epilepsyresources --- ### [SUDEP risk factors and my wakeup call](https://livingwellwithepilepsy.com/aboutepilepsy/sudep/latest-update-sudep.html) **Published:** December 29, 2013 **Author:** Jessica K. Smith **Excerpt:** According to Alicia Goldman, MD, PhD, SUDEP could affect 5-18% people with epilepsy. We are looking at a range of 3,250,000 to 11,700,000 deaths worldwide. **Content:** [![SUDEP RF](http://livingwellwithepilepsy.com/wp-content/uploads/2013/12/Screen-Shot-2013-12-26-at-1.29.06-PM.png "SUDEP Risk Factors – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2013/12/Screen-Shot-2013-12-26-at-1.29.06-PM.png)SUDEP Risk Factors from Alica Goldman MD PhDs presentation at ANA annual meeting in 2013I got a wake up call when I attended the American Neurological Association’s Annual Meeting. At the meeting I heard [Alica Goldman, MD, PhD, of Baylor College of Medicine](https://www.bcm.edu/people/view/alica-goldman-m-d-ph-d/b156106c-ffed-11e2-be68-080027880ca6) present her research on SUDEP or Sudden Unexpected Death in Epilepsy. She began her talk with a note on how the incidence of SUDEP is grossly underestimated and could affect a range of 5% to 18% people with epilepsy. > When applied worldwide, we are looking at a range of 3,250,000 to 11,700,000 deaths. > > In the US that translates to a range of **121,000 to 396,000 deaths each year**. Additionally, people with epilepsy are 24 times more likely to die than the general population. But that wasn’t what blew me away. ## SUDEP Risk Factors I sat in shock as she presented her findings on the risk factors associated with SUDEP as determined from animal studies. I had always understood that SUDEP was something that only impacted people who had refractory epilepsy. But if Dr. Goldman’s animal models hold true in humans, then [I was misled](http://www.cdc.gov/epilepsy/sudep/). According to Goldman’s animal model research, increased risk factors include the following: - Polytherapy (on more than one anticonvulsant) - Long duration of treatment - Gender (males at slightly higher risk) ## Neuro-Cardiac Connection She also spent a great deal of time focused on the role of the neuro-cardiac connection. When someone is pronounced dead it is known that the person has stopped breathing or the heart has stopped. It is also known that seizures are associated with prolonged and severe respiratory depression. I have to admit, the science on this is a bit over my head. However, [Maromi Nei, MD, published a piece that dovetails nicely with Dr. Goldman’s research](http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2728482/). ## My Wakeup Call The risk factors were too familiar for my comfort level. 1. I am also on more than one medication to control my seizures. 2. I have been on anticonvulsants for more than half my life and will be on them forever. 3. Oh yeah, forgot to mention, I have a family history of cardiac disease. The only thing working in my favor right now is that I am a woman! I can’t do anything about the polytherapy. I can’t do anything about the duration of treatment. But I can improve my cardiac and lung function. > Translation: I need to start running. ugh ## Running2live[![IMG_3593](http://livingwellwithepilepsy.com/wp-content/uploads/2013/12/IMG_3593-150x150.jpg "IMG_3593 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2013/12/IMG_3593.jpg) Every time I think about running I am overwhelmed with dread. You would think I would be out there every day, right? No, I am a body at rest. (you know, a body in motion will remain in motion, while a body at rest– oh you get it.) Recently, my husband suggested I might want to blog about my reason for running and my progress. He offered it as a motivator, I of course took it to a new (unnecessarily complicated) level. I’m going to add a section of the site called Running2live and keep you all in the loop on how I’m doing. DON’T expect a lot. It is really cold here. And I REALLY hate running. But I love my husband and daughter and want to spend as much time with them as I can. Any suggestions are welcome!! ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** SUDEP **Tags:** running, SUDEP --- ### [Running stinks but so does SUDEP](https://livingwellwithepilepsy.com/aboutepilepsy/sudep/running-stinks.html) **Published:** January 2, 2014 **Author:** Jessica K. Smith **Excerpt:** I knew the dog would not be a good running partner, but she was a good excuse to get outside. That turned into more of a run/walk/sniff/stop/bark at other dogs/walk/sniff/run/walk. This was not what I had in mind. **Content:** [![](http://livingwellwithepilepsy.com/wp-content/uploads/2014/01/IMG_2977-300x224.jpg "IMG_2977 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/01/IMG_2977.jpg)Puppy## \#Running2Live Series Okay guys, I promised myself, I promised you, I promised my husband, but most important I promised my daughter, [I would start running](http://livingwellwithepilepsy.com/2013/12/latest-update-sudep.html). But seriously, running stinks. I’ve made a little progress. Here’s what I’ve done so far: ## Step 1: Sneakers I pulled out my sneakers. They still fit which is good because I really don’t want to go buy a new pair. But maybe that doesn’t count since I pulled them out to take a pic for the last blog post. hmmm, oh well. ## Step 2: Gear The timing of this was perfect. My sister gave me a big fat gift certificate to GAP/Banana Republic/Piperlime/Athleta/OldNavy. I looked on all the sites and wanted to get the best bang for my buck so I bought some workout gear from [Old Navy](http://oldnavy.com). They were having an after christmas sale. So with my gift certificate I was able to get two pairs of workout pants and a workout top I will be able to wear throughout the winter. Oh did I mention, it is damn cold here. ## Step 3: Map My Run I went online to [MapMyRun.com](http://mapmyrun.com) to create a 1 mile, 1.5 mile, and a 3.1 mile loop. Then I showed my daughter the loops. She agreed they were not that bad. However, I might feel differently when I am actually trying to run them. When I told a friend I had mapped my run she asked details that made it clear to me she thought I had actually run one of these loops. I laughed and said, “Oh I haven’t run yet, I just *mapped* the run.” ## Step 4: Get outside We have sort of a big goofy dog as seen above. She’s always happy to go for another walk. So, I decided to take the dog on a walk following the 1 mile loop. That was a good start especially since it was freezing out. The next day I took her for what I hoped would be a run. That adventure was not nearly as successful. I knew the dog would not be a good running partner but she was a good excuse to get outside. That turned into more of a run/walk/sniff/stop/bark at other dogs/walk/sniff/run/walk. This was not what I had in mind. But at least I got outside. ## More later That’s all I’ve done so far. I’ll let you know how the next round goes. Keep your fingers crossed I don’t take a header. After all, I’m not the most graceful creature. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** SUDEP **Tags:** exercise, running --- ### [Epilepsy Blog Relay: Leila on PAME and SUDEP](https://livingwellwithepilepsy.com/aboutepilepsy/sudep/leila-on-pame-and-sudep.html) **Published:** November 12, 2018 **Author:** Leila Shields **Excerpt:** Leila attended her first PAME conference and found it was a meaningful way to connect with others in the epilepsy community to discuss SUDEP. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/11/LeilaMattWedding-0480-640x960.jpg "Leila+MattWedding-0480 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/nov-18-ebr-posts/leila-on-pame-and-sudep.html/attachment/leilamattwedding-0480)***This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from November 1 to November 30, 2018. Follow along!*** #### Leila on PAME Over the summer, I was fortunate to attend the [Partners Against Mortality in Epilepsy](https://pame.aesnet.org/) conference with Living Well With Epilepsy founder Jessica Smith. It was an interesting and meaningful way to come together with others in the epilepsy world to discuss and address [SUDEP](https://livingwellwithepilepsy.com/2013/aboutepilepsy/latest-update-sudep.html), with the ultimate goal of reducing and eliminating Sudden Unexplained Death in Epilepsy. I attended plenary sessions where all attendees gathered to hear a group of speakers, and small breakout sessions on a variety of topics related to SUDEP and epilepsy. Those who attended included those from the medical field, pharmaceutical industry, social services, therapists, researchers, and loved ones whose family members have passed from SUDEP. Every story I heard was moving–hearing stories in person was so moving. I’m always sad to hear these stories but was all the more inspired by the strength of those who are telling them. #### A bit of hope It filled me with hope to hear from the professionals doing research on SUDEP and the progress that is being made each day. We are learning more about SUDEP, the specific markers they look for in the brain when identifying SUDEP, and how [seizure detection](https://livingwellwithepilepsy.com/?p=100071) is advancing. It is safe to say that the epilepsy community at large is growing and we are using that growth to support each other in so many ways. I can’t imagine how much more we will know when the next Partners Against Mortality in Epilepsy conference is held. #### Leila’s take on Living with Epilepsy I know I cannot go back in time and change events. I know that epilepsy has also had a positive impact on my life. And I know that no matter how I look at it, my epilepsy is not going away. So, this is when I rely on my loved ones, to help me through the days I struggle. I rely on the epilepsy community, to remind me that life is not all bad with [epilepsy](https://livingwellwithepilepsy.com/2018/aboutepilepsy/adjusting-to-a-medication-change.html). And I rely on myself to ultimately pick myself up, put one foot in front of the other, and move forward with my life. At the end of the day, epilepsy has impacted life in good and bad days. The only way to get through the bad days is to focus on the good. *Special thanks to the [Danny Did Foundation](https://www.dannydid.org/events/partners-against-mortality-in-epilepsy-pame-conference-/) who provided gratis registration to the PAME Conference, which made our attendance possible.* --- **NEXT UP:** Be sure to check out the next post by Lily at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/start-here) **TWITTER CHAT:** Save the date for the #LivingWellChat on December 6 at 12 Noon ET. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/11/EBR-Nov18-150x150.png "EBR - Nov18 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/november-2018-participants)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our generous sponsors and partners! [Become a Sponsor ](https://livingwellwithepilepsy.com/2018-19-media-kit-_all) ![author avatar](https://secure.gravatar.com/avatar/4cebf381fbce646cb0dbabef2348282b941c67524a3f03f08d6e328fa6c976cb?s=300&d=mm&r=g) Leila Shields Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania. [See Full Bio](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/leila.zorzie) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://lzorzie) **Categories:** SUDEP **Tags:** epilepsy, PAME, SUDEP --- ### [After the loss: SUDEP from a family perspective](https://livingwellwithepilepsy.com/aboutepilepsy/sudep/after-the-loss-sudep-from-a-family-perspective.html) **Published:** December 1, 2018 **Author:** Guest Contributor **Excerpt:** After the loss: Tonya always thought, because she was older and had more seizures, SUDEP would steal her away first. Instead, the family lost Jesy to SUDEP in 2012. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/11/FB_20161227_20_13_44_Saved_Picture-640x480.jpg "SUDEPtonya – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/fb_20161227_20_13_44_saved_picture)Tonya’s Story Around the year 2000, my daughter Jesy and I were diagnosed with rare genetic forms of Epilepsy. Although our doctor was one of the best in the country and modern medicine was exploring every angle to find solutions, several years later [our diagnosis](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/nov-18-ebr-posts/5-tips-for-dealing-with-an-epilepsy-diagnosis.html) was classified as refractory, or medically uncontrolled, and our doctor spoke to us about [SUDEP ( Sudden Unexplained Death in Epilepsy)](https://livingwellwithepilepsy.com/category/sudep). After the initial conversation about SUDEP with our Epileptologist, we agreed a healthy and wise move would be to discuss our “end-of-life” plans with each other on a regular basis, around Thanksgiving every year. Thanksgiving was a good time because the month was observed as one of [Epilepsy Awareness](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/nov-18-ebr-posts/colleens-mom-reminds-us-that-knowledge-is-power.html) and SUDEP was now a big part of our Epilepsy journey. Thanksgiving was also a good time because the conversation gave us so much more for which to be thankful during that time of year. We always thought, because I was oldest and had experienced more seizures for many more years, SUDEP would steal me away first. SUDEP is a thief, a bold thief with no remorse or concern for one’s desire to live. SUDEP steals in the blink of an eye or release of a breath. November 2012, SUDEP stole my daughter moments after my last happy words with her. I miss her physical body and still shed tears from time to time. But, surviving SUDEP in the way that I have has [made me stronger](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/nov-18-ebr-posts/fran-encourages-others-to-seize-adventure.html) and helps me carry on to live my purpose which was one of her last wishes for me. Jesy hoped that I would live my purpose of sharing wisdom of my life experiences through words, pass them on to public ready to take action to become powerful, responsible, abundant and prosperous adults. Whether you or a loved on carries the diagnosis of Epilepsy, remember, life is too short. The time to stop fighting to everything ( even awareness) is now. The time to care for one another and ourselves is now. The time to increase our self empowerment and learn more about taking better care of ourselves is now. Develop a growing gratitude for every moment, even the uncomfortable moments. These were some of the words and last wishes of my daughter Jesy, for the public living with a diagnosis of Refractory Epilepsy. #### Talk about it Remember, having a diagnosis of epilepsy may or may not mean you are at risk for SUDEP. So, be courageous and talk to your doctor. Then build on that courage and continue the conversation with family members and friends. --- [Share your story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** SUDEP --- ### [On SUDEP and New-Onset Refractory Status Epilepticus (NORSE)](https://livingwellwithepilepsy.com/aboutepilepsy/sudep/sudep-and-norse.html) **Published:** November 28, 2020 **Author:** Audra Sisak **Excerpt:** Comedian and actor, Bob Dibuono, shares his family's experience with SUDEP and New-Onset Refractory Status Epilepticus (NORSE). **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/Bob-and-Dad.jpg "Bob and Dad – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/Bob-and-Dad.jpg)People with epilepsy confront fear daily. We are brutally aware of [Sudden Unexpected Death from Epilepsy (SUDEP)](https://livingwellwithepilepsy.com/2013/aboutepilepsy/latest-update-sudep.html) that takes lives every year. The pain of losing an individual can be exacerbated when a rare condition is not diagnosed quick. Comedian and actor, Bob Dibuono, witnessed this pain first hand with the death of his father to another seizure-related condition. He talked with me about his experience caring for his Dad until the end and his thoughts on his Father’s condition of [New-Onset Refractory Status Epilepticus (NORSE)](https://rarediseases.org/rare-diseases/new-onset-refractory-status-epilepticus-norse/). #### The sudden onset Bob’s Dad was a healthy individual who played golf for exercise and leisure, sticking to his diet. In fact, he had been playing golf the day he became ill. His Dad came home from the golf course feeling disoriented. The seizures started by the time they reached the hospital that evening. The next eight weeks were spent running multiple lab tests, x-rays, and scans. According to the family, communication was not ideal between hospital staff and the family; however, they did work together trying to come up with a possible reason his Dad was presenting with multiple seizures. All tests came back negative which left doctors perplexed about the situation. They used heavy steroid dosages to control swelling which helped his Dad recover enough to be awake. During this time, he was also on seizure medications to control the Status Epilepticus. Soon, the steroids were scaled back per protocol and the seizures returned in full force. Bob saw his Dad lose his adaptive daily skills, but remained hopeful for an answer, driving to the hospital each day. He was able to make his Dad smile, even in the end. His Dad was admitted to the hospital on October 3rd, 2019 and passed away on December 24, 2019. #### New-Onset Refractory Status Epilepticus (NORSE) It is hard to cope with the death of a family member, then throw in a cause that is not defined but is simply an explanation. New-Onset Refractory Status Epilepticus (NORSE) is that rare condition presenting in approximately 3,000 people per year in the United States. The prolonged seizures that occur with NORSE stem from a variety of issues including infections, strokes, metabolic, or idiopathic. The symptoms can be seen within 24-72 hours of presentation with many individuals making a recovery. Those who recover sometimes need lifelong needed supports (National Organization for Rare Disorders, 2020). Others do not get their second chance, leaving the mortality rate of NORSE at about 30%. This means around a thousand people will die this year with no firm diagnosis, but a set of symptoms and small explanation. This leaves the family left behind wondering if there was something that could have been done differently? Could medical treatment have been different? Were there signs they missed? #### A Clinical Description According to NORD, [New-onset refractory status epilepticus (NORSE)](https://rarediseases.org/rare-diseases/new-onset-refractory-status-epilepticus-norse/) is defined as a condition, not a specific diagnosis, with new onset of refractory [status epilepticus](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/epilepsy-blog-relay-the-reality-of-seizure-rescue-medications-for-adults.html) without a clear acute or active structural, toxic or metabolic cause in a patient without active epilepsy. Status epilepticus (SE) is a condition of prolonged seizure activity or repeated seizures without full recovery in between. Status epilepticus that persists despite at least two standard anti-seizure medications is termed refractory status epilepticus (RSE). Most of the common causes of RSE can be identified within 24-72 hours of presentation. Febrile infection-related epilepsy syndrome (FIRES) is a subcategory of NORSE that requires a prior febrile infection starting between 2 weeks and 24 hours prior to onset of refractory status epilepticus, with or without fever at onset of status epilepticus. In up to half of the cases of NORSE, a possible or probable cause is ultimately found, most often autoimmune or paraneoplastic encephalitis, with infectious causes less common. In the remaining half or more, no cause is identified despite an extensive work-up. #### Timing is important The “diagnosis” of NORSE for his Dad did not come until postmortem. Bob realized that communication between family and healthcare professionals is crucial. Seizures are scary and that first 24 hours seem to be pivotal for a neurology unit to get in for the evaluation. That is the one regret he has is not getting his Dad to the neurology clinic sooner (B. Dibuono, personal communication, November 2020). Our epilepsy shows us the fragility of human life. We do not know when our time will come when our souls will be released from the physical body. It is our job to live life being happy, doing what is right by us. Take the time to express love in all forms of communication to each other. It is our responsibility to educate on seizure safety but not dwell on the “what ifs” in life. Bob has been my friend for thirteen years. I have seen him grow as a comedian, supporting him all the way. His father is with him, proud of the man he has become on this Earth. Keep making us laugh Bob. We need it. Story originally shared on: --- #### References: National Organization of Rare Disorders (NORD). (2020). NORSE (New Onset Refractory Status Epilepticus) and FIRES (Febrile Infection-Related Epilepsy Syndrome). Retrieved from ![author avatar](https://secure.gravatar.com/avatar/b21a0aa498334f5594b605bcb69144d40cce7b2037684d4b246b1590d7b07d35?s=300&d=mm&r=g) Audra Sisak My name is Audra (Momma Employee) and I have a son The Boss. We are both autistic and have epilepsy! We are both trying to navigate this complex world, together. He runs my schedule and we experience love and life as one family. Our journey comes with ups and downs, but it’s our lives. Welcome to our crazy, funny, weird, socially awkward, introverted, anxiety-ridden, happy, joyful page!We are both supportive of neurodiversity! Momma Employee- QASP, CAS, BCCS, Freelance Writer, Advocate. I love working with my community! I support SCERTS model, DLT model, and therapy to include CBT/ACT. [See Full Bio](https://livingwellwithepilepsy.com/author/audrasisak) [ ](https://livingwellwithepilepsy.com/author/audrasisak) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/2015hlwa/) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://2015hlwa1) **Categories:** SUDEP --- ### [Epilepsy Blog Relay: My beef with SUDEP Research](https://livingwellwithepilepsy.com/aboutepilepsy/sudep/my-beef-with-sudep-research.html) **Published:** June 9, 2022 **Author:** Jessica K. Smith **Excerpt:** Before I started treatment for Cancer, I knew my "5-yr survival rate" was 39%. Yet it's taken ~40 years to est. 29% of deaths in epilepsy could be from SUDEP. **Content:** ## ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/06/SUDEP-Stats-1024x1024.jpg "SUDEP Stats – Living Well With Epilepsy") What’s my deal with SUDEP Research As I begin, let’s bear in mind I go for my next chemo infusion tomorrow for [Stage 3C Ovarian Cancer](https://livingwellwithepilepsy.com/2022/epilepsy-blog-relay/epilepsy-blog-relay-5-things-cancer-taught-me-about-epilepsy.html "Epilepsy Blog Relay: 5 things Cancer taught me about Epilepsy"). Before I ever started treatment, I knew what my [cancer tumor marker was (CA125)](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7763876/) and [I knew my “relative 5-year survival rate” was 39%](https://ocrahope.org/patients/about-ovarian-cancer/staging/). Whereas, I have several of the risk factors for SUDEP or Sudden Unexplained Death in Epilepsy ([according to the CDC](https://www.cdc.gov/epilepsy/about/sudep/index.htm)), yet I’ve been living with epilepsy for ~40 years with no information on my life expectancy or level of risk for SUDEP. If you read on you will find that recent SUDEP Research shows that 29% of deaths in epilepsy can be attributed to SUDEP. So why has it taken 40+ years to figure this out and why is nobody talking about this. Let’s break it down. ## SUDEP Risk Factors The main risk factors for SUDEP are: - Uncontrolled or frequent seizures - **Generalized convulsive (also called *tonic-clonic* or *grand mal*) seizures** Other possible risk factors may include - **Seizures that begin at a young age.** - **Many years of living with epilepsy.** - Missed doses of medicine. - Drinking alcohol. \*My personal risk factors are in bold. There are also some [SUDEP researchers evaluating cardiac and respiratory risk factors](http://www.sudepresearch.org/) as well. So, considering my dad had his first heart attack at 32 and more cardiac issues later in life I can probably consider that another risk factor. ## My beef with SUDEP Research Research is super. No seriously research is great. But it is slow. In the meantime, doctors are not even using the word SUDEP with newly diagnosed patients. As you might expect, I’m an impatient patient. And more to the point, the statistics are represented in this way: ### “Studies suggest that the all-cause and SUDEP mortality rates are 1.7 per 1000 person-years” What the absolute heck does that mean? I mean to me personally. Not for your study. I mean for me, you know the person actually living with the disease. If someone reading this would like to translate this statement from 1000 person-years into relative #of years survival rate that would be amazing. Please surprise me. ## Doctors aren’t talking about SUDEP In cancer, doctors talk about mortality all the time. In AIDS doctors talk about mortality all the time. In Cardiology doctors talk about mortality all the time. Yet, in neurology, and in epilepsy specifically, there is a hesitancy to talk about mortality. One of my very first questions to my pediatric neurologist was “will I die.” The straight answer was no. Sure I was 12, but I knew enough to ask. Now should this answer have been couched in some level of truth? Yes probably. Should my doctor have said it’s a possibility? Yes. Full stop. Should she have told me and my parents that seizures which last too long can be very dangerous? And if you do not take your meds when you should, you are more at risk to have a seizure that could put you in what we call [status epilepticus](https://livingwellwithepilepsy.com/2020/epilepsy-blog-relay/sudep-and-norse.html). This is a very long an very dangerous type of seizure. You could also be at risk for [seizure clusters](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/epilepsy-blog-relay-the-reality-of-seizure-rescue-medications-for-adults.html). (by the way I experienced both in my teens – though my parents never had info on either). At least then, we would have had a sense of urgency that this is an important matter. ## Under-use of SUDEP as a cause of death According to a study published in the journal [Epilepsy Research](https://onlinelibrary.wiley.com/doi/10.1111/epi.16793), “Prevalence data for sudden unexplained death in epilepsy (SUDEP) are hampered by its underuse as a final diagnosis on death certificates in appropriate cases. Few data exist about how coroners (COs) and medical examiners (MEs) in the United States use the diagnosis of SUDEP.” In an effort to combat this under-use of SUDEP as a cause of death, members of the National Association of Medical Examiners, North American SUDEP Registry, Epilepsy Foundation SUDEP Institute, American Epilepsy Society, and the Centers for Disease Control and Prevention convened an expert panel in 2018. Their goal was to generate evidence-based recommendations for the practice of death investigation and autopsy, toxicological analysis, interpretation of autopsy and toxicology findings, and death certification in cases where SUDEP could be present. They hoped to improve the precision of death certificate data available for public health surveillance of epilepsy-related deaths. The recommendations provided in the position paper generated by this panel was intended to assist medical examiners, coroners, and death investigators when a sudden, unexpected death in a person with epilepsy is encountered. It is unclear at this date whether or not these guidelines have improved reporting. [LINK TO FULL POSITION PAPER ](https://www.thename.org/assets/docs/Epilepsy%20Position%20Paper.pdf) ## What we do know However, [Elizabeth Donner, MD, M.Sc., FRCPC](https://www.sickkids.ca/en/staff/d/elizabeth-donner/), Director, Comprehensive Epilepsy Program at The Hospital for Sick Children, and Michael Bahen Chair in Epilepsy Research, University of Toronto, a leading researcher in SUDEP, published a study in Epilepsia looking at [“Autopsy-reported cause of death in a population-based cohort of sudden unexpected death in epilepsy.”](https://onlinelibrary.wiley.com/doi/10.1111/epi.16793) This original research reviewed 15,229 case summaries of forensic autopsies conducted in Ontario, Canada between January 2014 and June 2016. These case summaries were retrospectively screened using a language processing script for decedents with a history of epilepsy or seizures. Case summaries then received a secondary manual review for potential SUDEP cases by two neurologists who independently examined the autopsy reports and classified deaths by [Nashef criteria](https://www.sudepglobalconversation.com/nashef-cdpi). [LINK TO PAPER ](https://onlinelibrary.wiley.com/doi/10.1111/epi.16793) ## 29% of deaths in epilepsy (wait what?) This review resulted in 485 Cases with a history of epilepsy or seizure. From that group cases were reviewed by the two neurologists mentioned above to determine whether cases were: [Definite SUDEP (108), SUDEP Plus (34)](https://livingwellwithepilepsy.com/wp-content/uploads/2022/06/epi16793-sup-0001-supinfo.pdf), Possible SUDEP, Probable SUDEP, and Near SUDEP. For the purposes of this post I will only include those cases which were determined to be [Definite SUDEP and SUDEP Plus](https://livingwellwithepilepsy.com/wp-content/uploads/2022/06/epi16793-sup-0001-supinfo.pdf). [(have linked to the supplementary documentation showing these numbers from the study.)](https://livingwellwithepilepsy.com/wp-content/uploads/2022/06/epi16793-sup-0001-supinfo.pdf) **Here we go with a word problem:** If the total number of epilepsy cases = 485 And the total number of Definite SUDEP + SUDEP Plus cases = 142 **QUESTION 1:** Can we estimate a percentage of SUDEP deaths from this sample of 485 epilepsy cases found among 15,229 case summaries of forensic autopsies? - I believe we can. And we should. - The estimated percentage of SUDEP Deaths is representative of **29% of deaths in epilepsy** as seen in this sample - Consider: SUDEP was still vastly undercounted between January 2014 and June 2016. **QUESTION 2:** Can we also estimate the percentage of epilepsy cases as compared to the broader population using this sample? If the total number of reviewed case summaries of forensic autopsies conducted in Ontario, CAN between Jan. 2014 and Jun. 2016 = 15,229 And the total number of confirmed case summaries with a history of epilepsy or seizure = 485 - I believe we can. And we should. - The estimated percentage of epilepsy cases as compared to the broader population is much closer to 3.1% of the population. - Consider: Currently the WHO, CDC and Epilepsy Foundation are using the outdated statistic [of 1.4% of the population](https://www.cdc.gov/epilepsy/data/index.html). ## It’s time for changes As I mentioned in a previous article, Mary Lasker was outraged in the 1970’s when she discovered that no organizations were committing 500K (at least as much as a toothpaste ad campaign at the time) when her housekeeper was diagnosed with uterine cancer. **It’s time for epilepsy to have a proper count of cases world wide.** - Can this not be generated in some way through electronic medical records? I’d love to hear from someone at [HIMSS,](https://www.himss.org/) [BIO](https://www.bio.org/) or even the [EHR Association](https://www.ehra.org/) on this. **It’s time for epilepsy to have a proper count of SUDEP cases world wide.** - Has anything been done to follow up on the position paper to ensure there is an increased use of SUDEP as a cause of death? **It’s time to have a proper life expectancy and staging as in cancer.** - [Research has been done on life expectancy but no public messaging on it is available via the CDC, WHO or Epilepsy Foundation.](https://pubmed.ncbi.nlm.nih.gov/21278406/#affiliation-1) I’d love to hear your thoughts on this. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** SUDEP **Tags:** SUDEP, SUDEP Research --- ### [Epilepsy Blog Relay: Danny Did Foundation on SUDEP](https://livingwellwithepilepsy.com/aboutepilepsy/sudep/danny-did-foundation-and-sudep.html) **Published:** March 2, 2023 **Author:** Jessica K. Smith **Excerpt:** The Danny Did Foundation (DDF) has worked tirelessly since 2010 toward its mission to increase awareness of Sudden Unexpected Death in Epilepsy (SUDEP). **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/02/1594245984428.jpg "1594245984428 – Living Well With Epilepsy")Tom Stanton President Danny Did Foundation## Raising awareness of SUDEP [The Danny Did Foundation (DDF)](https://www.dannydid.org/) was founded by Chicagoans Mike and Mariann Stanton in 2010 after the death of their four-year-old son Danny to [Sudden Unexpected Death in Epilepsy (SUDEP)](https://livingwellwithepilepsy.com/sudep "SUDEP"). Since that time the Foundation has worked tirelessly toward its mission to prevent deaths caused by seizures with these main goals in mind: 1. Advancing public awareness of Sudden Unexpected Death in Epilepsy (SUDEP) 2. Enhancing SUDEP education and disclosure between medical professionals and families afflicted by seizures 3. Enhancing the mainstreaming of seizure detection and prediction devices that may assist in preventing seizure-related deaths ## What is SUDEP Sudden Unexpected Death in Epilepsy (SUDEP) is when a seemingly healthy person with epilepsy dies unexpectedly and no clear reason for the death can be determined. In most cases, an autopsy is required to rule out other causes of death. The most common criteria used to determine whether a death is due to SUDEP are: - The person has epilepsy, which is defined as recurrent unprovoked seizures. - The person died unexpectedly while in a reasonable state of health. - The death occurred suddenly and during normal activity (often during sleep). - An obvious medical cause of death could not be determined at autopsy. - The death was not the direct result of status epilepticus. Epilepsy impacts more than 3.4 million people in the United States – more people than ever before, per the CDC – and at least 65 million people worldwide. Thousands of U.S. deaths occur annually from SUDEP, and [estimated 50,000 deaths occur worldwide each year due to SUDEP](https://www.dannydid.org/about-us/), status epilepticus (prolonged seizures), and other seizure-related causes such as drowning and other accidents. [Journal article on SUDEP](https://onlinelibrary.wiley.com/doi/full/10.1111/epi.12794) ## Epilepsy Device Grants The Foundation provides resources and immediate support, often related to education or funding for seizure detection devices. To date, DDF has provided grants to enable seizure alerting devices across all 50 states and 15 countries. If you are seeking funds to help with the cost of a device to help manage your epilepsy, review and research the product options listed on their website, and then complete their application. ***Note:** the DDF does not provide funding support for every system.* ## **Danny Did Foundation Grant Application:** [click here](https://www.dannydid.org/assets/1/6/DDF_Grant_Application_Web1.pdf) Remember that a submission of an application does not equal a guarantee of funding. If you have questions, contact us at kgaughan@dannydid.org. ## Epilepsy Awareness Day at DisneyLand Grants Each year the Danny Did Foundation offers a lottery for Epilepsy Awareness Day at DisneyLand grants to families that need financial assistance to attend. Please visit https://www.dannydid.org to watch for more information. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** SUDEP **Tags:** #epilepsygrants, DannyDidFoundation, SUDEP --- ### [The breakdown on SUDEP with Dr. Kim Pargeon](https://livingwellwithepilepsy.com/aboutepilepsy/sudep/the-breakdown-on-sudep-with-dr-kim-pargeon.html) **Published:** September 27, 2023 **Author:** Landis Wiedner **Content:** ![sudep](https://livingwellwithepilepsy.com/wp-content/uploads/2023/09/3-1024x1024.jpg "3 – Living Well With Epilepsy") In this episode, [What the EF podcast](https://www.whattheefpodcast.com/) tackles an audience-requested topic: [SUDEP](https://livingwellwithepilepsy.com/2023/epilepsy-blog-relay/danny-did-foundation-and-sudep.html "Epilepsy Blog Relay: Danny Did Foundation on SUDEP"). There are so many questions, and Dr. Kim Pargeon guides through all of them. Available on your favorite streaming service! [YouTube](https://youtu.be/hmAa-vUbPVI), [Spotify](https://open.spotify.com/show/4rOV3qJjUwJxY7gKCl8z6m), [Apple](https://podcasts.apple.com/us/podcast/what-the-ef/id1649361278), [Google Podcasts](https://podcasts.google.com/feed/aHR0cHM6Ly9hbmNob3IuZm0vcy9iM2RjZjlhYy9wb2RjYXN0L3Jzcw), [Amazon Music](https://music.amazon.com/podcasts/f1311e20-cb73-44de-b5f0-14d4457e6002/what-the-ef), & [Audible](https://www.audible.com/pd/What-the-EF-Podcast/B0BHZLVX7D?qid=1665590894&sr=1-1&ref=a_search_c3_lProduct_1_1&pf_rd_p=83218cca-c308-412f-bfcf-90198b687a2f&pf_rd_r=MSGJFHHWHH7GTYXJA9PK) Stay in touch with What the EF by following us on Insta [@whattheefpodcast](https://www.instagram.com/whattheefpodcast/); subscribing to our YouTube channel [@WhatTheEFPodcast](https://www.youtube.com/channel/UCYLkbgKUgppiVrVmE-ABEsw); and signing up for newsletters at [whattheefpodcast.com](https://www.whattheefpodcast.com/). ![author avatar](https://secure.gravatar.com/avatar/19f5d1347b7f55432fb2ccf0b0547690de128dddd6f088aac79df9f670cd34f1?s=300&d=mm&r=g) Landis Wiedner Landis is a Chicago-based writer, whose work has been featured on [NBCNewsTHINK](https://www.nbcnews.com/THINK), [Wired](https://www.wired.com/) and [Chicago Tribune](https://www.chicagotribune.com/). She is a writer and Editor for Living Well With Epilepsy. Landis brings a humorous perspective to life with epilepsy. Diagnosed at 32 years old, she sheds light and laughs on managing a new life with seizures. Landis strives to create a touchstone for the chronically ill and those who support them. She is currently finishing a humorous memoir, “My Brain Tumor’s Boyfriend.” [See Full Bio](https://livingwellwithepilepsy.com/author/landiswiedner) [ ](https://livingwellwithepilepsy.com/author/landiswiedner) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://twitter.com/BillieTopanga) **Categories:** SUDEP **Tags:** epilepsy, Epilepsy Awareness, epilepsy stigma, seizures, SUDEP --- ### [International Epilepsy Day: One woman's journey with epilepsy in Zimbabwe](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/one-womans-journey-with-epilepsy-in-zimbabwe.html) **Published:** February 12, 2024 **Author:** Guest Contributor **Excerpt:** Lisa, who has grown up in Zimbabwe and Kenya, shares how living with epilepsy has had both a physical and psychological effect on her. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/IMG-20171117-WA0025-768x1024.jpg "IMG-20171117-WA0025 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/IMG-20171117-WA0025.jpg)Lisa’s Story One of the questions that a person living with epilepsy is always asked is “what is epilepsy?” Epilepsy has been defined as a [chronic neurologic disorder](https://www.who.int/news-room/fact-sheets/detail/epilepsy) of the brain, and according to the World Health Organization (WHO), more than 50 million people worldwide are living with epilepsy. While it is not contagious, there has been a lot of social stigma around this disease. It is characterized by episodic seizures and the causes include but are not limited to brain damage from prenatal injury, congenital disorders and abnormal brain development. A seizure is a sudden surge of electrical activity in the brain. Seizures can cause strange sensations, emotions, and behavior. Seizures can also cause convulsions, muscle spasms, and loss of consciousness. #### Explaining Epilepsy While this is the scientific definition I am always faced with how to simply explain what epilepsy is – something that I have struggled my whole life to understand. With the social stigma, I have come up with a definition that is less demeaning and easier for the public to understand. To me, epilepsy is simply ‘fighting you for you’. I have chosen this definition because this is what it feels from personal experiences. During the seizures, the pain is so intense and real, and I fight for it to end, but the more I fight the more prolonged it is. The medical experts say “you should let the seizure take its course” but that is easier said than done. I say ‘fighting you for you’ because on several occasions I have to fight different factors that may possibly cause epileptic seizures. These factors range from diet change, to being emotionally hyped, a change of environment, an infection, a simple pollination of flowers, the anti-epileptic drugs, and the most difficult for me as a woman is the unavoidable monthly cycle among others. #### Early experiences with epilepsy My first seizure happened when I was still a baby but doctors told my parents that it was a convulsion. They said that I would grow out of it when I got to a certain age. Well, that did not happen and in fact the seizures got worse so I was put on medication. From when I was around 8 years old, my family moved a lot due to my dad’s different work postings. We eventually settled in Zimbabwe when I was around 11. I had a neurologist in South Africa who monitored my progress and said I was fairing on well, and the prescriptions for my anti-epileptic drugs reduced but somehow my health deteriorated again. The truth is this had both a physical and psychological effect on me and I felt like yet again I had failed in accomplishing a goal. The seizures were getting the best of me physically. I was getting emotionally bullied in school and this had its fair share of negative effects on me psychologically. I decided that going to school was not an option for me because it was a reminder of my abnormalities. #### The social burden of epilepsy My parents were able to somehow convince me to go back to school. [According to research, people with epilepsy feel stigmatized by their conditions](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3200035/). Further evidence from research, [show that the stigma correlates with anxiety, depression and low self-esteem](https://www.ibe-epilepsy.org/wp-content/uploads/2013/07/1-Burden-Stigma-of-Epilepsy-Hanneke-de-Boer.pdf). In school I had no friends because people thought it was contagious and that I was bewitched. I went through high school feeling and being lonely with just a handful of friends who to some extent understood my condition. It is hard up to date to live with epilepsy because people are unfortunately still uneducated on the matter. We moved back to Kenya, my home country in 2013 where I finished high school studying under the Accelerated Christian Education System. The stigma of living with epilepsy back home in Kenya was the same as in Zimbabwe. The reaction from my fellow students was the same and so was the treatment. I joined university in 2017 and I was determined that it was a fresh start for me. No one knew of my condition and therefore I fitted in nicely. #### Epilepsy in college At first I was very reserved and introverted but as time went by I became fairly out spoken. With my determination of being “normal”, and not sharing my condition with anyone, the first one and a half years of university I would occasionally get sick and have serious injuries. I had and still have encounters with lectures telling me I ‘faked’ my condition as an excuse for missing classes or not do exams. Some lectures put me in compromising positions and with my refusal to their expectations; there was a price to pay hence being graded unfairly on some occasions. Due to the prolonged use of the AEDs I had and still do experience memory loss issues – something that people with epilepsy experience as a side effect of the drugs but of course the severity is different for every individual. On some occasions they also said that I understood concepts slower than the rest of the students, which is another effect of people with epilepsy. Soon after, my condition was known to people around me at the university and of course they asked questions. My friends were helpful when I had the seizures and would put in the effort to make sure I got the necessary help but as time went on even they had enough and slowly started to leave. The medical team at the university was and is still helpful when called upon. I am in my last year of University and honestly I have been through a lot and may not have the same amount of people in my life as when I started, but through those experiences there are positive factors to take from them. I still get the seizures but living well with epilepsy is a goal I hope to achieve. I am working with my neurologist to see what anti-epileptic drugs work best for me. I recognize that the medical experts can only do so much and it is upon me to do my part. #### My 4 tips for living with epilepsy **1. Physical activity can help** Stress is a major problem for me. I can’t live with it and can’t live without it. In order to be able to control stress and minimize “spin cycling” in my mind, I have a list of do’s and don’ts to help me cope better with stress. I do this by engaging in physical activity and noticing when I am tired and allowing myself to take a rest. **2. Find work arounds for memory issues** Memory loss (brain fog) and short concentration span is another problem for me and for that I try having sticky notes and phone reminders to try curb it. Eating right also contributes a whole lot when it comes to mental clarity. A healthy diet is beneficial both physically and mentally. **3. Have a seizure response plan** Having a seizure pre-, during, and post plan is key because it helps the people around you to know what to do and not to do. Having a support system of family and friends is crucial because you don’t have to worry about being in safe hands. You can do this by informing the people who are around you what to do if/when you have a seizure; it serves as a first aid guide as well. Having an epilepsy diary is great so that you document what type of seizure it was, what happened during the seizure, when it happened and a lot more. This makes it easier for your neurologist to have better diagnosis. **4. Communicate with your neurologist** The most important thing to do is communicate with your neurologist. It is important that you let them know how you are faring, and how your AEDs are treating you because there are many other modes of treatment. If you feel the neurologist is the problem then change them, and never self-medicate as the interactions may have negative effects. #### Lisa’s personal experience Am not an expert but these are just personal experiences that I am sharing with hopes that they will help others and let them know that we all have a story to tell and we are perfect in all our imperfections. Even though I may feel like a burden because I get seizures and can’t do some “simple” things, I am reminded that every person is differently abled. Lisa Kiarie is founder of the Lisa Kiarie Epilepsy Foundation. To learn more about her efforts you can find her on social media at . ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** International Epilepsy --- ### [DBT: One Piece of the Epilepsy Healthcare Puzzle](https://livingwellwithepilepsy.com/life-with-epilepsy/mentalhealth/dbt-one-piece-of-the-epilepsy-healthcare-puzzle.html) **Published:** July 22, 2024 **Author:** Jessica K. Smith **Excerpt:** DBT can be an essential part of your epilepsy healthcare puzzle, helping you achieve better health through emotional and mental well-being. **Content:** ## [![How DBT Fits Into Your Epilepsy Care](https://livingwellwithepilepsy.com/wp-content/uploads/2024/07/3-1024x1024.jpg "How DBT Fits Into Your Epilepsy Care – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2024/07/3.jpg)How DBT Fits into Your Epilepsy Care [Epilepsy](https://livingwellwithepilepsy.com/epilepsy "About Epilepsy: The Basics") is a complex condition that affects both the body and mind. To manage it effectively, a comprehensive approach that addresses all aspects of health is essential. [Dialectical Behavior Therapy (DBT)](https://livingwellwithepilepsy.com/2024/mentalhealth/what-is-dbt.html "What is Dialectical Behavioral Therapy or DBT ?") offers a structured method to enhance your epilepsy care plan, helping you achieve better health through emotional and mental well-being. [Check Out Our Series on DBT ](https://livingwellwithepilepsy.com/category/mentalhealth) ## Mindfulness: The Foundation of Well-Being Mindfulness is a cornerstone of DBT, helping you stay present and aware. For individuals with epilepsy, [mindfulness can reduce stress](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4988075/), recognize early seizure signs, and promote overall well-being. Techniques such as deep breathing and body scans can be easily incorporated into your daily routine, providing moments of calm and balance. ## Distress Tolerance: Managing Tough Moments Distress tolerance skills are essential for handling difficult emotions and crises without making things worse. This is particularly important for managing the emotional challenges that can accompany epilepsy. Techniques like distraction, [self-soothing](https://www.sciencedirect.com/science/article/abs/pii/S1525505016305625), and radical acceptance help you cope with intense emotions and maintain stability during crises. ## Emotion Regulation: Balancing Your Emotions Emotion regulation is the ability to understand and manage your feelings, preventing them from becoming overwhelming. For those with epilepsy, this skill is crucial for maintaining emotional balance and reducing stress. DBT provides tools to identify your emotions, understand their causes, and develop strategies to manage them effectively. ## Interpersonal Effectiveness: Building Strong Relationships Interpersonal effectiveness ensures that you can communicate your needs clearly and build stronger relationships. This skill is vital for fostering a supportive network of family, friends, and healthcare providers. Techniques such as assertive communication and the DEAR MAN skill (see below but don’t worry, we’ll get into these more later) from DBT can help you express yourself confidently and effectively. [![DEAR MAN](https://livingwellwithepilepsy.com/wp-content/uploads/2024/07/Screen-Shot-2024-07-16-at-4.16.57-PM-e1721161139605.png "DEAR MAN – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2024/07/Screen-Shot-2024-07-16-at-4.16.57-PM-e1721161139605.png) ## Integrating DBT into Your Epilepsy Care Plan By incorporating DBT’s four key skills into your epilepsy care plan, you create a supportive environment that addresses both the physical and psychological aspects of epilepsy. This skills based method ensures that all pieces of your health puzzle fit together, leading to a more comprehensive and effective management strategy. ## Putting it all Together DBT can be an essential part of your epilepsy healthcare plan, helping you achieve better health through a structured approach to emotional and mental well-being. By mastering mindfulness, distress tolerance, emotion regulation, and interpersonal effectiveness, you can navigate your epilepsy journey with greater ease and achieve better health outcomes. Start incorporating these DBT skills into your daily routine and discover the difference they can make in your life. One easy way is to work with an epilepsy coach that also has epilepsy and is familiar with DBT, just a thought… [Book a FREE discovery call ](https://calendly.com/livingwellwithepilepsy/epilepsy-coaching-discovery-call) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Mental Health **Tags:** #epilepsycoach, DBT and Epilepsy --- ### [National Epilepsy Awareness Month: Why Advocacy Matters](https://livingwellwithepilepsy.com/aboutepilepsy/treatments/national-epilepsy-awareness-month-why-advocacy-matters.html) **Published:** November 14, 2024 **Author:** Jessica K. Smith **Excerpt:** November is National Epilepsy Awareness Month—a time to amplify the voices of the 3.4 million Americans living with epilepsy. Advocacy is crucial, helping to dispel myths and foster understanding.  **Content:** [![November is Epilepsy Awareness Month](https://livingwellwithepilepsy.com/wp-content/uploads/2024/11/Jessica-Smith-Set-2-FB.png "November is Epilepsy Awareness Month – Living Well With Epilepsy")](https://www.xcopri.com/?utm_campaign=PM-US-XCOP-1549_LIV_12241&utm_source=Living%20Well%20with%20Epilepsy&utm_medium=custom&utm_content=Disease_Information&utm_term=XCOPRI&content=%ecid!.%epid!)*This blog post is sponsored by SK Life Science, Inc.* November marks *National Epilepsy Awareness Month*, a time dedicated to increasing public understanding of epilepsy and supporting the 3.4 million Americans living with this condition. For those of us navigating life with epilepsy, it’s not just about awareness but also about advocacy, education, and creating real change. This month is a time to reflect on what advocacy and awareness really means – and why it matters every single day. ## Advocacy is Personal Epilepsy doesn’t just affect one aspect of life—it impacts everything from relationships and careers to daily routines and mental health. The unpredictability of seizures can be one of the hardest parts of living with epilepsy. Knowing that a seizure can happen at any time makes life feel unstable, especially before finding the right treatment. However, advocacy is one thing that is within our control. By sharing experiences and raising awareness, individuals can help educate others, dispel myths, and encourage a better understanding of epilepsy. Advocacy is powerful because it transforms struggles into a tool for change, giving people living with epilepsy a platform to be heard. ## What Epilepsy Awareness Means During National Epilepsy Awareness Month, organizations, advocates, and communities come together to shine a light on the realities of living with epilepsy. Epilepsy has long been misunderstood, with outdated stereotypes and stigma making it even harder for those affected to live openly. Awareness is more than just recognition—it’s about ensuring that people with epilepsy feel seen and supported. This month is an opportunity to educate others about the condition, from what a seizure looks like to how they can help someone during one. It’s also a time to advocate for policies that support epilepsy research, better access to healthcare, and resources for those in need. ## Finding Support in the Epilepsy Community One of the most important aspects of National Epilepsy Awareness Month is the sense of community it fosters. Living with epilepsy can feel isolating, but connecting with others who understand the journey can make all the difference. Whether through online platforms or local support groups, finding others who truly understand the ups and downs is invaluable. As the epilepsy community works together to raise awareness, it also builds a support system that encourages everyone to be their best advocates. The power of community and shared experiences helps individuals feel less alone and more empowered to navigate their epilepsy journey. ## The Role of Treatment in Managing Epilepsy A crucial part of raising epilepsy awareness is understanding the importance of finding effective treatments and that there’s no one-size fits all approach to managing epilepsy. For many people with epilepsy, finding the right treatment is essential to living well. [XCOPRI](https://www.xcopri.com/?utm_campaign=PM-US-XCOP-1549_LIV_12241&utm_source=Living%20Well%20with%20Epilepsy&utm_medium=custom&utm_content=Disease_Information&utm_term=XCOPRI&content=%ecid!.%epid!) (cenobamate tablets) CV, a prescription medication indicated for the treatment of partial-onset seizures in adults aged 18 and older, is one of those treatment options that can play a key role in helping manage seizures. Like any medication, [XCOPRI](https://www.xcopri.com/?utm_campaign=PM-US-XCOP-1549_LIV_12241&utm_source=Living%20Well%20with%20Epilepsy&utm_medium=custom&utm_content=Disease_Information&utm_term=XCOPRI&content=%ecid!.%epid!) has risks and benefits. Do not take XCOPRI if you are allergic to it or have a genetic problem (called familial short QT syndrome) that affects the electrical system of the heart. XCOPRI can have serious side effects including serious allergic reaction which may affect organs and other parts of your body like the liver or blood cells. XCOPRI may cause problems with the electrical system of the heart (QT shortening). Antiseizure drugs, including XCOPRI, may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call your doctor right away if you have suicidal thoughts or actions, or new or worsening depression, anxiety, or irritability. XCOPRI may cause problems that affect your nervous system, including dizziness, trouble walking or with coordination, feeling sleepy and tired, trouble concentrating, remembering and thinking clearly, and vision problems. Do not drive, operate heavy machinery, or do other dangerous activities until you know how XCOPRI affects you. These are not all of XCOPRI’s side effects. I encourage you to read the Important safety information included at the end of this article. For those struggling to control their seizures, discussing [XCOPRI](https://www.xcopri.com/?utm_campaign=PM-US-XCOP-1549_LIV_12241&utm_source=Living%20Well%20with%20Epilepsy&utm_medium=custom&utm_content=Disease_Information&utm_term=XCOPRI&content=%ecid!.%epid!) with a neurologist or epileptologist may be a critical step. Like any medication, XCOPRI has potential side effects, so reviewing the Important Safety Information and talking with a healthcare provider about the risks and benefits is essential. ## Let’s Make a Difference This November This National Epilepsy Awareness Month, everyone can take steps to make a difference by raising their voice to create meaningful change. Whether it’s sharing personal stories, educating others, or advocating for better support systems, every action counts. Together, the epilepsy community can work toward a future where epilepsy is better understood. For more information about epilepsy and XCOPRI, please visit [XCOPRI.com](https://www.xcopri.com/?utm_campaign=PM-US-XCOP-1549_LIV_12241&utm_source=Living%20Well%20with%20Epilepsy&utm_medium=custom&utm_content=Disease_Information&utm_term=XCOPRI&content=%ecid!.%epid!). ### **IMPORTANT SAFETY INFORMATION and INDICATION for XCOPRI® (cenobamate tablets) CV** **DO NOT TAKE XCOPRI IF YOU:** - Are allergic to cenobamate or any of the other ingredients in XCOPRI. - Have a genetic problem (called Familial Short QT syndrome) that affects the electrical system of the heart. ### XCOPRI CAN CAUSE SERIOUS SIDE EFFECTS, INCLUDING: **Allergic reactions: XCOPRI can cause serious skin rash or other serious allergic reactions which may affect organs and other parts of your body like the liver or blood cells.** You may or may not have a rash with these types of reactions. Call your healthcare provider right away and go to the nearest emergency room if you have any of the following: swelling of your face, eyes, lips, or tongue, trouble swallowing or breathing, a skin rash, hives, fever, swollen glands, or sore throat that does not go away or comes and goes, painful sores in the mouth or around your eyes, yellowing of your skin or eyes, unusual bruising or bleeding, severe fatigue or weakness, severe muscle pain, frequent infections, or infections that do not go away**. Take XCOPRI exactly as your healthcare provider tells you to take it. It is very important to increase your dose of XCOPRI slowly, as instructed by your healthcare provider.** **QT shortening: XCOPRI may cause problems with the electrical system of the heart (QT shortening).** Call your healthcare provider if you have symptoms of QT shortening including fast heartbeat (heart palpitations) that last a long time or fainting. **Suicidal behavior and ideation:** Antiepileptic drugs, including XCOPRI, may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call your health care provider right away if you have any of the following symptoms, especially if they are new, worse, or worry you: thoughts about suicide or dying; attempting to commit suicide; new or worse depression, anxiety, or irritability; feeling agitated or restless; panic attacks; trouble sleeping (insomnia); acting aggressive; being angry or violent; acting on dangerous impulses; an extreme increase in activity and talking (mania); or other unusual changes in behavior or mood. **Nervous system problems:** XCOPRI may cause problems that affect your nervous system. Symptoms of nervous system problems include: dizziness, trouble walking or with coordination, feeling sleepy and tired, trouble concentrating, remembering, and thinking clearly, and vision problems. **Do not drive, operate heavy machinery, or do other dangerous activities until you know how XCOPRI affects you.** **Do not drink alcohol or take other medicines that can make you sleepy or dizzy while taking XCOPRI without first talking to your healthcare provider.** **DISCONTINUATION:** **Do not stop taking XCOPRI without first talking to your healthcare provider.** Stopping XCOPRI suddenly can cause serious problems. Stopping seizure medicine suddenly in a patient who has epilepsy can cause seizures that will not stop (status epilepticus). **DRUG INTERACTIONS:** XCOPRI may affect the way other medicines work, and other medicines may affect how XCOPRI works. **Do not start or stop other medicines without talking to your healthcare provider.** Tell healthcare providers about all the medicines you take, including prescription and over-the-counter medicines, vitamins and herbal supplements. **PREGNANCY AND LACTATION:** XCOPRI may cause your birth control medicine to be less effective. **Talk to your health care provider about the best birth control method to use.** **Talk to your health care provider if you are pregnant or plan to become pregnant.** It is not known if XCOPRI will harm your unborn baby. Tell your healthcare provider right away if you become pregnant while taking XCOPRI. You and your healthcare provider will decide if you should take XCOPRI while you are pregnant. If you become pregnant while taking XCOPRI, talk to your healthcare provider about registering with the North American Antiepileptic Drug (NAAED) Pregnancy Registry. The purpose of this registry is to collect information about the safety of antiepileptic medicine during pregnancy. You can enroll in this registry by calling 18882332334 or go to [www.aedpregnancyregistry.org](http://www.aedpregnancyregistry.org/). **Talk to your health care provider if you are breastfeeding or plan to breastfeed.** It is not known if XCOPRI passes into breastmilk. Talk to your healthcare provider about the best way to feed your baby while taking XCOPRI. **COMMON SIDE EFFECTS:** The most common side effects in patients taking XCOPRI include dizziness, sleepiness, headache, double vision, and feeling tired. These are not all the possible side effects of XCOPRI. Tell your healthcare provider if you have any side effect that bothers you or that does not go away. For more information, ask your healthcare provider or pharmacist. **Call your doctor for medical advice about side effects. You may report side effects to FDA at 1800FDA1088** or at [**www.fda.gov/medwatch**](http://www.fda.gov/medwatch)**.** **DRUG ABUSE:** **XCOPRI is a federally controlled substance (CV) because it can be abused or lead to dependence.** Keep XCOPRI in a safe place to prevent misuse and abuse. Selling or giving away XCOPRI may harm others and is against the law. **INDICATION:** XCOPRI is a prescription medicine used to treat partial-onset seizures in adults 18 years of age and older. It is not known if XCOPRI is safe and effective in children under 18 years of age. Please see additional patient information in the [**Medication Guide**](https://chrome-extension//efaidnbmnnnibpcajpcglclefindmkaj/https:/www.xcopri.com/pdf_file/xcopri_cenobamate_medication_guide_4-2024.pdf). This information does not take the place of talking with your healthcare provider about your condition or your treatment. Please see full [**Prescribing Information**](https://chrome-extension//efaidnbmnnnibpcajpcglclefindmkaj/https:/www.xcopri.com/pdf_file/xcopri_cenobamate_prescribing_information_medication_guide_combined.pdf) and [**Medication Guide**](https://chrome-extension//efaidnbmnnnibpcajpcglclefindmkaj/https:/www.xcopri.com/pdf_file/xcopri_cenobamate_medication_guide_4-2024.pdf). ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Treatments --- ### [Strength and Resilience: Kailey and Alan’s Journey with Epilepsy](https://livingwellwithepilepsy.com/aboutepilepsy/treatments/strength-and-resilience-kailey-and-alans-journey-with-epilepsy.html) **Published:** December 5, 2024 **Author:** Jessica K. Smith **Excerpt:** Kailey and her father Alan's journey with epilepsy has been one of perseverance and hope, marked by years of searching for the right treatment. **Content:** ## [![Kailey and Alan Journey with Epilepsy](https://livingwellwithepilepsy.com/wp-content/uploads/2024/12/Picture1-600x400.jpg "Kailey and Alan Journey with Epilepsy – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/partner/strength-and-resilience-kailey-and-alans-journey-with-epilepsy.html/attachment/picture1-5)Kailey and Alan’s Journey with Epilepsy *This blog post is sponsored by SK Life Science, Inc.* Epilepsy can present a long, challenging journey for both patients and their families. For Kailey and her father, Alan, their story is one of perseverance, resilience, and unwavering hope. After years of searching for answers and trying various treatments, they’ve now found a path forward, one that they’re eager to share to raise awareness and support within the epilepsy community. ## **The Beginning of Their Journey with Epilepsy** Kailey was just 14 years old when she experienced her first seizure. She woke up in the middle of the night feeling like something was terribly wrong, but she didn’t fully understand what had happened. It wasn’t until months later when her parents witnessed one of her seizures that the family realized the true nature of what was going on. Alan recalls the night Kailey had a seizure while falling asleep in their bedroom. Hearing her cry out for help, Alan and his wife rushed her to the emergency room, where Kailey was finally diagnosed with epilepsy. For the family, the diagnosis brought both relief and fear—relief in having an answer, but fear of the challenges ahead. ## **The Struggle to Find the Right Epilepsy Treatment** Over the next several years, Kailey and her family embarked on a difficult journey to find a treatment that could control her seizures. During this time, they tried several medications, but none provided the relief they were hoping for. Each treatment came with side effects that made it difficult to balance seizure control while continuing to go about everyday life. Alan and Kailey spent countless hours researching treatments, speaking with doctors, and learning from others in the epilepsy community. One of the most challenging decisions they faced was whether Kailey should undergo a responsive neurostimulation (RNS) procedure, which involved implanting a device in her brain to help control her seizures. Kailey ultimately decided to go through with the surgery, but unfortunately, while her seizures decreased in frequency, they did not stop completely. ## **Finding Hope with XCOPRI (cenobamate tablets) CV** After some time had passed after the surgery, Kailey’s epileptologist recommended trying a newer treatment called [XCOPRI](https://www.xcopri.com/?utm_campaign=%20PM-US-XCOP-1552_LIV_12245&utm_source=Living%20Well%20with%20Epilepsy&utm_medium=custom&utm_content=Disease_Information&utm_term=XCOPRI&content=%ECid%21.%25epid%21), a prescription medication indicated for the treatment of partial-onset seizures in adults aged 18 and older. With the possibility of reduced seizures, Kailey decided to give it a try. Alan remembers the sense of hope they felt as they began this new chapter in their treatment journey. Like any medication, XCOPRI has risks and benefits. Do not take XCOPRI if you are allergic to it or have a genetic problem (called familial short QT syndrome) that affects the electrical system of the heart. XCOPRI can have serious side effects including serious allergic reaction which may affect organs and other parts of your body like the liver or blood cells. XCOPRI may cause problems with the electrical system of the heart (QT shortening). Antiseizure drugs, including XCOPRI, may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call your doctor right away if you have suicidal thoughts or actions, or new or worsening depression, anxiety, or irritability. XCOPRI may cause problems that affect your nervous system, including dizziness, trouble walking or with coordination, feeling sleepy and tired, trouble concentrating, remembering and thinking clearly, and vision problems. Do not drive, operate heavy machinery, or do other dangerous activities until you know how XCOPRI affects you. These are not all of XCOPRI’s side effects. I encourage you to read the Important safety information included at the end of this article. For those struggling to control their seizures, discussing XCOPRI with a neurologist or epileptologist may be a critical step. Like any medication, XCOPRI has potential side effects, so reviewing the Important Safety Information and talking with a healthcare provider about the risks and benefits is essential. To learn more about epilepsy and XCOPRI, visit [XCOPRI.com](https://www.xcopri.com/?utm_campaign=%20PM-US-XCOP-1552_LIV_12245&utm_source=Living%20Well%20with%20Epilepsy&utm_medium=custom&utm_content=Disease_Information&utm_term=XCOPRI&content=%ECid%21.%25epid%21). See the Important Safety Information below. Kailey started XCOPRI, and over time, her seizures began to decrease significantly. The turning point came during a time when Kailey’s partial-onset seizures were usually at their worst—during her menstrual cycle. They braced themselves for the usual seizures, but this time, none occurred. It was a breakthrough moment for the entire family. ## **Moving Forward** Since starting XCOPRI, Kailey’s seizures have dramatically reduced, giving her and her family a renewed sense of hope. Due to her reduced seizures, Kailey can now participate in many activities that once seemed out of reach. From spending time with friends to traveling and returning to the sports she loves, she’s been able to rediscover the things she’s passionate about. Kailey and Alan continue to share their story to raise awareness about epilepsy and offer hope to others who are navigating their own epilepsy journey. Their message is one of resilience—reminding others that, even on the hardest days, it’s important to hold on to the hope that things will get better. ## **IMPORTANT SAFETY INFORMATION and INDICATION for XCOPRI® (cenobamate tablets) CV** **DO NOT TAKE XCOPRI IF YOU:** - Are allergic to cenobamate or any of the other ingredients in XCOPRI. - Have a genetic problem (called Familial Short QT syndrome) that affects the electrical system of the heart. **XCOPRI CAN CAUSE SERIOUS SIDE EFFECTS, INCLUDING:** **Allergic reactions: XCOPRI can cause serious skin rash or other serious allergic reactions which may affect organs and other parts of your body like the liver or blood cells.** You may or may not have a rash with these types of reactions. Call your healthcare provider right away and go to the nearest emergency room if you have any of the following: swelling of your face, eyes, lips, or tongue, trouble swallowing or breathing, a skin rash, hives, fever, swollen glands, or sore throat that does not go away or comes and goes, painful sores in the mouth or around your eyes, yellowing of your skin or eyes, unusual bruising or bleeding, severe fatigue or weakness, severe muscle pain, frequent infections, or infections that do not go away**. Take XCOPRI exactly as your healthcare provider tells you to take it. It is very important to increase your dose of XCOPRI slowly, as instructed by your healthcare provider.** **QT shortening: XCOPRI may cause problems with the electrical system of the heart (QT shortening).** Call your healthcare provider if you have symptoms of QT shortening including fast heartbeat (heart palpitations) that last a long time or fainting. **Suicidal behavior and ideation:** Antiepileptic drugs, including XCOPRI, may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call your health care provider right away if you have any of the following symptoms, especially if they are new, worse, or worry you: thoughts about suicide or dying; attempting to commit suicide; new or worse depression, anxiety, or irritability; feeling agitated or restless; panic attacks; trouble sleeping (insomnia); acting aggressive; being angry or violent; acting on dangerous impulses; an extreme increase in activity and talking (mania); or other unusual changes in behavior or mood. **Nervous system problems:** XCOPRI may cause problems that affect your nervous system. Symptoms of nervous system problems include: dizziness, trouble walking or with coordination, feeling sleepy and tired, trouble concentrating, remembering, and thinking clearly, and vision problems. **Do not drive, operate heavy machinery, or do other dangerous activities until you know how XCOPRI affects you.** **Do not drink alcohol or take other medicines that can make you sleepy or dizzy while taking XCOPRI without first talking to your healthcare provider.** **DISCONTINUATION:** **Do not stop taking XCOPRI without first talking to your healthcare provider.** Stopping XCOPRI suddenly can cause serious problems. Stopping seizure medicine suddenly in a patient who has epilepsy can cause seizures that will not stop (status epilepticus). **DRUG INTERACTIONS:** XCOPRI may affect the way other medicines work, and other medicines may affect how XCOPRI works. **Do not start or stop other medicines without talking to your healthcare provider.** Tell healthcare providers about all the medicines you take, including prescription and over-the-counter medicines, vitamins and herbal supplements. **PREGNANCY AND LACTATION:** XCOPRI may cause your birth control medicine to be less effective. **Talk to your health care provider about the best birth control method to use.** **Talk to your health care provider if you are pregnant or plan to become pregnant.** It is not known if XCOPRI will harm your unborn baby. Tell your healthcare provider right away if you become pregnant while taking XCOPRI. You and your healthcare provider will decide if you should take XCOPRI while you are pregnant. If you become pregnant while taking XCOPRI, talk to your healthcare provider about registering with the North American Antiepileptic Drug (NAAED) Pregnancy Registry. The purpose of this registry is to collect information about the safety of antiepileptic medicine during pregnancy. You can enroll in this registry by calling 1‑888‑233‑2334 or go to [www.aedpregnancyregistry.org](http://www.aedpregnancyregistry.org). **Talk to your health care provider if you are breastfeeding or plan to breastfeed.** It is not known if XCOPRI passes into breastmilk. Talk to your healthcare provider about the best way to feed your baby while taking XCOPRI. **COMMON SIDE EFFECTS:** The most common side effects in patients taking XCOPRI include dizziness, sleepiness, headache, double vision, and feeling tired. These are not all the possible side effects of XCOPRI. Tell your healthcare provider if you have any side effect that bothers you or that does not go away. For more information, ask your healthcare provider or pharmacist. **Call your doctor for medical advice about side effects. You may report side effects to FDA at 1‑800‑FDA‑1088** or at [**www.fda.gov/medwatch**](http://www.fda.gov/medwatch)**.** **DRUG ABUSE:** **XCOPRI is a federally controlled substance (CV) because it can be abused or lead to dependence.** Keep XCOPRI in a safe place to prevent misuse and abuse. Selling or giving away XCOPRI may harm others and is against the law. **INDICATION:** XCOPRI is a prescription medicine used to treat partial-onset seizures in adults 18 years of age and older. It is not known if XCOPRI is safe and effective in children under 18 years of age. Please see additional patient information in the [**Medication Guide**](https://www.xcopri.com/pdf_file/xcopri_cenobamate_medication_guide_8-2025.pdf). This information does not take the place of talking with your healthcare provider about your condition or your treatment. Please see full [**Prescribing Information**](https://www.xcopri.com/pdf_file/xcopri_cenobamate_prescribing_information.pdf) and [**Medication Guide**](https://www.xcopri.com/pdf_file/xcopri_cenobamate_medication_guide_8-2025.pdf). ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Treatments --- ### [Finding Strength on the “Road to Reduction”](https://livingwellwithepilepsy.com/aboutepilepsy/treatments/finding-strength-on-the-road-to-reduction.html) **Published:** August 5, 2025 **Author:** Jessica K. Smith **Excerpt:** Living with an epilepsy diagnosis means facing a road to reduction of seizures that’s rarely straight or smooth. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2025/08/XCOPRI-DTC-Commercial-Image_BLOG-600x311.png "XCOPRI DTC Commercial Image_BLOG – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-stories/finding-strength-on-the-road-to-reduction.html/attachment/xcopri-dtc-commercial-image_blog)Living with an epilepsy diagnosis means facing a road that’s rarely straight or smooth. It’s a journey filled with twists, setbacks, and moments where you question everything. As someone who has been navigating epilepsy for decades, I know how frustrating and unpredictable life with seizures can be. Additionally, it is important to remember that zero seizures, while a worthy goal, may not be possible for everyone living with epilepsy. If we allow ourselves to focus on the road to reduction of seizures, we are that much closer to living well with epilepsy. ## Introducing the “Road to Reduction” That’s why the XCOPRI® (cenobamate tablets) CV, indicated for partial onset seizures in adults, commercial resonated with me. This national campaign from SK Life Science Inc., titled “Road to Reduction,” offers an honest, emotional look at what it means to live with epilepsy – and the hope that comes from finding an epilepsy treatment that works for you. The commercial tells the story of a young man and his father on a road trip. As they travel, they face obstacles that represent the real fears many of us carry: the fear that making a change to our medication will make things worse, the fear of trying a new epilepsy medication, the fear of side effects, and the fear of disappointment after so many previous setbacks. It’s a journey many of us in the epilepsy community understand all too well. ## Reduction of Seizures I know firsthand how important it is to have open, informed conversations with your doctor when you are living with epilepsy or caring for a loved one with epilepsy. And advocating for yourself is especially important if you’re still experiencing seizures or side effects while on an anti-seizure medication. XCOPRI is a prescription medication for adults with partial-onset seizures, and for some patients, it has helped reduce or even eliminate seizures over time. Like any medication, XCOPRI has risks and benefits. Do not take XCOPRI if you are allergic to it or have a genetic problem (called familial short QT syndrome) that affects the electrical system of the heart. XCOPRI can have serious side effects including serious allergic reaction which may affect organs and other parts of your body like the liver or blood cells. XCOPRI may cause problems with the electrical system of the heart (QT shortening). Antiseizure drugs, including XCOPRI, may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call your doctor right away if you have suicidal thoughts or actions, or new or worsening depression, anxiety, or irritability. XCOPRI may cause problems that affect your nervous system, including dizziness, trouble walking or with coordination, feeling sleepy and tired, trouble concentrating, remembering and thinking clearly, and vision problems. Do not drive, operate heavy machinery, or do other dangerous activities until you know how XCOPRI affects you. These are not all of XCOPRI’s side effects. I encourage you to read the Important safety information included at the end of this article. For those struggling to control their seizures, discussing XCOPRI with a neurologist or epileptologist may be a critical step. ## Your Road to Reduction Starts with a Conversation If you’re living with epilepsy or care for someone who is, I encourage you to watch “Road to Reduction” and share it. It’s a reminder that our stories matter, that we deserve to feel heard, and that we can still move forward. **You can view the full commercial here:** #### IMPORTANT SAFETY INFORMATION and INDICATION for XCOPRI® (cenobamate tablets) CV #### DO NOT TAKE XCOPRI IF YOU: · Are allergic to cenobamate or any of the other ingredients in XCOPRI. · Have a genetic problem (called Familial Short QT syndrome) that affects the electrical system of the heart. #### XCOPRI CAN CAUSE SERIOUS SIDE EFFECTS, INCLUDING: Allergic reactions: XCOPRI can cause serious skin rash or other serious allergic reactions which may affect organs and other parts of your body like the liver or blood cells. You may or may not have a rash with these types of reactions. Call your healthcare provider right away and go to the nearest emergency room if you have any of the following: swelling of your face, eyes, lips, or tongue, trouble swallowing or breathing, a skin rash, hives, fever, swollen glands, or sore throat that does not go away or comes and goes, painful sores in the mouth or around your eyes, yellowing of your skin or eyes, unusual bruising or bleeding, severe fatigue or weakness, severe muscle pain, frequent infections, or infections that do not go away. Take XCOPRI exactly as your healthcare provider tells you to take it. It is very important to increase your dose of XCOPRI slowly, as instructed by your healthcare provider. QT shortening: XCOPRI may cause problems with the electrical system of the heart (QT shortening). Call your healthcare provider if you have symptoms of QT shortening including fast heartbeat (heart palpitations) that last a long time or fainting. Suicidal behavior and ideation: Antiepileptic drugs, including XCOPRI, may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call your health care provider right away if you have any of the following symptoms, especially if they are new, worse, or worry you: thoughts about suicide or dying; attempting to commit suicide; new or worse depression, anxiety, or irritability; feeling agitated or restless; panic attacks; trouble sleeping (insomnia); acting aggressive; being angry or violent; acting on dangerous impulses; an extreme increase in activity and talking (mania); or other unusual changes in behavior or mood. Nervous system problems: XCOPRI may cause problems that affect your nervous system. Symptoms of nervous system problems include: dizziness, trouble walking or with coordination, feeling sleepy and tired, trouble concentrating, remembering, and thinking clearly, and vision problems. Do not drive, operate heavy machinery, or do other dangerous activities until you know how XCOPRI affects you. Do not drink alcohol or take other medicines that can make you sleepy or dizzy while taking XCOPRI without first talking to your healthcare provider. #### DISCONTINUATION: Do not stop taking XCOPRI without first talking to your healthcare provider. Stopping XCOPRI suddenly can cause serious problems. Stopping seizure medicine suddenly in a patient who has epilepsy can cause seizures that will not stop (status epilepticus). #### DRUG INTERACTIONS: XCOPRI may affect the way other medicines work, and other medicines may affect how XCOPRI works. Do not start or stop other medicines without talking to your healthcare provider. Tell healthcare providers about all the medicines you take, including prescription and over-the-counter medicines, vitamins and herbal supplements. #### PREGNANCY AND LACTATION: XCOPRI may cause your birth control medicine to be less effective. Talk to your health care provider about the best birth control method to use. Talk to your health care provider if you are pregnant or plan to become pregnant. It is not known if XCOPRI will harm your unborn baby. Tell your healthcare provider right away if you become pregnant while taking XCOPRI. You and your healthcare provider will decide if you should take XCOPRI while you are pregnant. If you become pregnant while taking XCOPRI, talk to your healthcare provider about registering with the North American Antiepileptic Drug (NAAED) Pregnancy Registry. The purpose of this registry is to collect information about the safety of antiepileptic medicine during pregnancy. You can enroll in this registry by calling 1-888-233-2334 or go to [www.aedpregnancyregistry.org](https://www.aedpregnancyregistry.org). Talk to your health care provider if you are breastfeeding or plan to breastfeed. It is not known if XCOPRI passes into breastmilk. Talk to your healthcare provider about the best way to feed your baby while taking XCOPRI. #### COMMON SIDE EFFECTS: The most common side effects in patients taking XCOPRI include dizziness, sleepiness, headache, double vision, and feeling tired. These are not all the possible side effects of XCOPRI. Tell your healthcare provider if you have any side effect that bothers you or that does not go away. For more information, ask your healthcare provider or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088 or at www.fda.gov/medwatch. #### DRUG ABUSE: XCOPRI is a federally controlled substance (CV) because it can be abused or lead to dependence. Keep XCOPRI in a safe place to prevent misuse and abuse. Selling or giving away XCOPRI may harm others and is against the law. #### INDICATION: XCOPRI is a prescription medicine used to treat partial-onset seizures in adults 18 years of age and older. It is not known if XCOPRI is safe and effective in children under 18 years of age. Please see additional patient information in the **[Medication Guide](https://www.xcopri.com/pdf_file/xcopri_cenobamate_medication_guide_4-2024.pdf).** This information does not take the place of talking with your healthcare provider about your condition or your treatment. Please see full [**Prescribing Information** ](https://www.xcopri.com/pdf_file/xcopri_cenobamate_prescribing_information_medication_guide_combined.pdf)and **[Medication Guide](https://www.xcopri.com/pdf_file/xcopri_cenobamate_medication_guide_4-2024.pdf)**. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Treatments --- ### [Shannon’s Story: Building a Strong Support System While Living With Epilepsy](https://livingwellwithepilepsy.com/aboutepilepsy/treatments/shannons-story-building-a-strong-support-system-while-living-with-epilepsy.html) **Published:** November 11, 2025 **Author:** Jessica K. Smith **Excerpt:** Living with epilepsy is a journey full of unknowns. For Shannon, a father from Louisiana, those unknowns brought fear, loss of independence, and emotional challenges. But through resilience, advocacy, and support, he’s found hope and a new path forward. **Content:** *This blog post is sponsored by SK Life Science, Inc*. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2025/10/shannon1-e1762803539198-600x537.png "shannon1 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/partner/sklifescience/shannons-story-building-a-strong-support-system-while-living-with-epilepsy.html/attachment/shannon1)Living with epilepsy is a journey full of unknowns. For Shannon, a father from Louisiana, those unknowns brought fear, loss of independence, and emotional challenges. But through resilience, advocacy, and support, he’s found hope and a new path forward. ## From Confusion to Diagnosis: Living With Epilepsy Shannon’s epilepsy journey began with unrecognized symptoms when he started to experience seizures that surfaced while working at the airport, where he serves as a terminal superintendent. As a social and active guy, Shannon brushed off the early signs of epilepsy until he was involved in an accident that served as a wake-up call. His first encounter with a neurologist left him feeling dismissed. “There were no tests run,” Shannon recalls. “It was almost like he was doubting in his mind what I was feeling.” Encouraged by friends, he sought a second opinion—and that’s when everything changed. With the help of a new doctor, Shannon learned that he had epilepsy and that it was triggered by fatigue and stress, two factors he could finally begin to manage. ## The Impact on Everyday Life Being diagnosed meant giving up many of the freedoms Shannon had taken for granted, especially driving. Relying on coworkers to get to and from work was more than inconvenient; it felt like a loss of autonomy. Even more painful was the emotional impact on his children. One of Shannon’s favorite things to do was taking his daughters out to dinner so that they could connect and give mom some free time. However, after his diagnosis, his wife didn’t want him to drive a car alone or with his daughters, so it was a harsh new reality for him to grasp. Witnessing his seizures was scary for his kids. “You’re supposed to be the strong one,” he says. “But when you’re going through something like that, it’s hard to look strong in front of your kids when inside you’re not.” ## Finding the Right Treatment For Shannon, the goal was always clear: work towards a seizure-free life. But after trying two medications that didn’t work, he felt skeptical when his neurologist recommended XCOPRI® (cenobamate tablets) CV, a prescription medication approved for the treatment of partial-onset seizures in adults 18 and older. “My first thought was, ‘Is this just another drug we’re going to add that’s not going to work?’” Shannon admits. He also hoped to reduce side effects by cutting back on at least one of his existing medications. Although doctors couldn’t remove any medications at the time due to the severity of his episodes, adding XCOPRI made a noticeable difference for him. “I noticed there was a significant reduction in my episodes,” he says. “I was hopeful that I could get my life back.” Like any medication, XCOPRI has risks and benefits. Do not take XCOPRI if you are allergic to it or have a genetic problem (called familial short QT syndrome) that affects the electrical system of the heart. XCOPRI can have serious side effects including serious allergic reaction which may affect organs and other parts of your body like the liver or blood cells. XCOPRI can cause liver problems, tell your doctor right away if you have any symptoms of liver problems including: yellowing of the skin and eyes (jaundice), nausea, vomiting, unusual darkening of the urine, or feeling tired or weak. XCOPRI may cause problems with the electrical system of the heart (QT shortening). Antiseizure drugs, including XCOPRI, may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call your doctor right away if you have suicidal thoughts or actions, or new or worsening depression, anxiety, or irritability. XCOPRI may cause problems that affect your nervous system, including dizziness, trouble walking or with coordination, feeling sleepy and tired, trouble concentrating, remembering and thinking clearly, and vision problems. Do not drive, operate heavy machinery, or do other dangerous activities until you know how XCOPRI affects you. These are not all of XCOPRI’s side effects. We encourage you to read the Important safety information included at the end of this article. ## Why Support is Paramount Shannon’s story stresses the importance of not facing epilepsy alone. Opening up can be difficult, but it can have a lasting, positive impact for those with epilepsy. For Shannon, the turning point was building a strong support system – one that included a compassionate medical team, friends who kept him motivated, and the deep love he has for his children. Having that kind of support, he believes, makes it much easier to handle the daily challenges of living with epilepsy. To learn more about Shannon and his story, **[click here](https://www.xcopri.com/epilepsy-patient-videos/)**. To learn more about XCOPRI, visit **[www.xcopri.com](https://www.xcopri.com/)** and talk to your doctor. ## IMPORTANT SAFETY INFORMATION and INDICATION for XCOPRI® (cenobamate tablets) CV **DO NOT TAKE XCOPRI IF YOU:** · Are allergic to cenobamate or any of the other ingredients in XCOPRI. · Have a genetic problem (called Familial Short QT syndrome) that affects the electrical system of the heart. **XCOPRI CAN CAUSE SERIOUS SIDE EFFECTS, INCLUDING:** Allergic reactions: XCOPRI can cause serious or life threatening skin rash or other serious allergic reactions which may affect organs and other parts of your body like the liver or blood cells. You may or may not have a rash with these types of reactions. Call your healthcare provider right away and go to the nearest emergency room if you have any of the following: swelling of your face, eyes, lips, or tongue, trouble swallowing or breathing, a skin rash, hives, fever, swollen glands, or sore throat that does not go away or comes and goes, painful sores in the mouth or around your eyes, yellowing of your skin or eyes, unusual bruising or bleeding, severe fatigue or weakness, severe muscle pain, frequent infections, or infections that do not go away. Take XCOPRI exactly as your healthcare provider tells you to take it. It is very important to increase your dose of XCOPRI slowly, as instructed by your healthcare provider. QT shortening: XCOPRI may cause problems with the electrical system of the heart (QT shortening). Call your healthcare provider if you have symptoms of QT shortening including fast heartbeat (heart palpitations) that last a long time or fainting. Suicidal behavior and ideation: Antiepileptic drugs, including XCOPRI, may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call your healthcare provider right away if you have any of the following symptoms, especially if they are new, worse, or worry you: thoughts about suicide or dying; attempting to commit suicide; new or worse depression, anxiety, or irritability; feeling agitated or restless; panic attacks; trouble sleeping (insomnia); acting aggressive; being angry or violent; acting on dangerous impulses; an extreme increase in activity and talking (mania); or other unusual changes in behavior or mood. Liver problems: XCOPRI may cause liver problems. Your healthcare provider will do blood tests to check your liver before you start XCOPRI and while you take XCOPRI if needed. Tell your healthcare provider right away if you have any symptoms of liver problems, such as: yellowing of the skin and eyes (jaundice), nausea, vomiting, unusual darkening of the urine, or feeling tired or weak. Nervous system problems: XCOPRI may cause problems that affect your nervous system. Symptoms of nervous system problems include: dizziness, trouble walking or with coordination, feeling sleepy and tired, trouble concentrating, remembering, and thinking clearly, and vision problems. Do not drive, operate heavy machinery, or do other dangerous activities until you know how XCOPRI affects you. Do not drink alcohol or take other medicines that can make you sleepy or dizzy while taking XCOPRI without first talking to your healthcare provider. **DISCONTINUATION:** Do not stop taking XCOPRI without first talking to your healthcare provider. Stopping XCOPRI suddenly can cause serious problems. Stopping seizure medicine suddenly in a patient who has epilepsy can cause seizures that will not stop (status epilepticus). **DRUG INTERACTIONS:** XCOPRI may affect the way other medicines work, and other medicines may affect how XCOPRI works. Do not start or stop other medicines without talking to your healthcare provider. Tell healthcare providers about all the medicines you take, including prescription and over-the-counter medicines, vitamins and herbal supplements. **PREGNANCY AND LACTATION:** XCOPRI may cause your birth control medicine to be less effective. Talk to your healthcare provider about the best birth control method to use. Talk to your healthcare provider if you are pregnant or plan to become pregnant. It is not known if XCOPRI will harm your unborn baby. Tell your healthcare provider right away if you become pregnant while taking XCOPRI. You and your healthcare provider will decide if you should take XCOPRI while you are pregnant. If you become pregnant while taking XCOPRI, talk to your healthcare provider about registering with the North American Antiepileptic Drug (NAAED) Pregnancy Registry. The purpose of this registry is to collect information about the safety of antiepileptic medicine during pregnancy. You can enroll in this registry by calling 1-888-233-2334 or go to www.aedpregnancyregistry.org. Talk to your healthcare provider if you are breastfeeding or plan to breastfeed. It is not known if XCOPRI passes into breastmilk. Talk to your healthcare provider about the best way to feed your baby while taking XCOPRI. **COMMON SIDE EFFECTS:** The most common side effects in patients taking XCOPRI include dizziness, sleepiness, headache, double vision, and feeling tired. These are not all the possible side effects of XCOPRI. Tell your healthcare provider if you have any side effect that bothers you or that does not go away. For more information, ask your healthcare provider or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088 or at **[www.fda.gov/medwatch](http://www.fda.gov/medwatch)**. **DRUG ABUSE:** XCOPRI is a federally controlled substance (CV) because it can be abused or lead to dependence. Keep XCOPRI in a safe place to prevent misuse and abuse. Selling or giving away XCOPRI may harm others and is against the law. **INDICATION:** XCOPRI is a prescription medicine used to treat partial-onset seizures in adults. . Please see additional patient information in the **[Medication Guide](https://www.xcopri.com/pdf_file/xcopri_cenobamate_medication_guide_8-2025.pdf)**. This information does not take the place of talking with your healthcare provider about your condition or your treatment. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Treatments --- ### [The guy behind the American Disability Act with Tony Coelho](https://livingwellwithepilepsy.com/epilepsy-stories/the-guy-behind-the-american-disability-act-with-tony-coelho.html) **Published:** October 11, 2023 **Author:** Landis Wiedner **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/10/5-1024x1024.jpg "5 – Living Well With Epilepsy") Here’s something to tell your boss–the primary sponsor of the [American Disability Act](https://livingwellwithepilepsy.com/2023/epilepsy-coach/5-reasons-to-work-with-an-epilepsy-health-coach.html "5 Reasons to work with an epilepsy health coach") also has epilepsy! [What the EF](https://www.youtube.com/@WhatTheEFPodcast) podcast chats with Tony about his vigorous fight to get the ADA passed and his mind-blowing [journey with seizures](https://livingwellwithepilepsy.com/2023/aboutepilepsy/rescue-medication/do-i-need-a-seizure-action-plan-as-an-adult.html "Do I need a seizure action plan as an adult?"). Available on: [YouTube](https://youtu.be/V7EIw0QduZU?si=TxbP2_CfLGo9hEXw), [Spotify](https://open.spotify.com/episode/4X3qD3ayPoS68EL0nmzKff?si=6893d6dfe49e4c9e), [Apple](https://podcasts.apple.com/us/podcast/what-the-ef/id1649361278), [Google Podcasts](https://podcasts.google.com/feed/aHR0cHM6Ly9hbmNob3IuZm0vcy9iM2RjZjlhYy9wb2RjYXN0L3Jzcw), [Amazon Music](https://music.amazon.com/podcasts/f1311e20-cb73-44de-b5f0-14d4457e6002/what-the-ef), & [Audible](https://www.audible.com/pd/What-the-EF-Podcast/B0BHZLVX7D?qid=1665590894&sr=1-1&ref=a_search_c3_lProduct_1_1&pf_rd_p=83218cca-c308-412f-bfcf-90198b687a2f&pf_rd_r=MSGJFHHWHH7GTYXJA9PK) Stay connected to What the EF! **Instagram:** [@whattheefpodcast](https://www.instagram.com/whattheefpodcast/) **YouTube:** [@WhatTheEFPodcast](https://www.youtube.com/channel/UCYLkbgKUgppiVrVmE-ABEsw) **Website:** [whattheefpodcast.com](https://www.whattheefpodcast.com/) ![author avatar](https://secure.gravatar.com/avatar/19f5d1347b7f55432fb2ccf0b0547690de128dddd6f088aac79df9f670cd34f1?s=300&d=mm&r=g) Landis Wiedner Landis is a Chicago-based writer, whose work has been featured on [NBCNewsTHINK](https://www.nbcnews.com/THINK), [Wired](https://www.wired.com/) and [Chicago Tribune](https://www.chicagotribune.com/). She is a writer and Editor for Living Well With Epilepsy. Landis brings a humorous perspective to life with epilepsy. Diagnosed at 32 years old, she sheds light and laughs on managing a new life with seizures. Landis strives to create a touchstone for the chronically ill and those who support them. She is currently finishing a humorous memoir, “My Brain Tumor’s Boyfriend.” [See Full Bio](https://livingwellwithepilepsy.com/author/landiswiedner) [ ](https://livingwellwithepilepsy.com/author/landiswiedner) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://twitter.com/BillieTopanga) **Categories:** Epilepsy Stories **Tags:** ADA, american disability act, epilepsy, Epilepsy Awareness, seizures, Stigma --- ### [My Continued Journey Toward Seizure Freedom](https://livingwellwithepilepsy.com/aboutepilepsy/treatments/my-continued-journey-toward-seizure-freedom.html) **Published:** July 20, 2021 **Author:** Mary Kate O'Donnell **Excerpt:** Mary Kate shares her personal experience with XCOPRI®: "I experienced fewer seizures. I went from having multiple seizures a day to having only a handful in a three-month period." **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/07/Picture1-200x300.png "Picture1 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2021/07/Picture1.png)**[Scroll down for Important Safety Information](#safetyinfoJuly21)** This article was sponsored by: [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/10/logo-300x113.jpg "SK Life Science Inc Logo – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2020/10/logo.jpg) #### Mary Kate’s Story For as long as I can remember, I’ve wanted to act. But when I collapsed in a college acting class, my lifelong dream was shattered. I had been reciting a Shakespeare monologue when the room started to close in. My professor was speaking, but I couldn’t think, couldn’t understand as the heat in the room began to feel somehow tangible. The next thing I remember was waking up, staring at the ceiling surrounded by my classmates. I heard someone say I’d been out for almost five minutes and to call an ambulance, but I had no idea where I was nor how I’d gotten there. When I arrived at the hospital, the doctors explained that I had experienced an “absence seizure.” They also explained I needed to reach out to an epileptologist for treatment right away, as this hadn’t been my first seizure, and it probably wouldn’t be my last. In the months leading up to that day, there were times I had felt off. At first, I thought I was just tired from my exhausting schedule of waking up early, attending classes all day and play rehearsals at night, memorizing lines, doing homework, and repeating it all over again. I chose to dismiss the nights I woke up on the floor of my dorm room or at the bottom of the stairs in my building. Deep down I knew that if I acknowledged that something was wrong, it would compromise my dream of becoming an actress and pursuing musical theater. But that day was different. I could no longer ignore what had just happened in front of my professor and classmates. When the epileptologists at a nearby hospital confirmed my epilepsy diagnosis a few days later, I was speechless, contrary to my usual nature. No one in my family had epilepsy, and the very word “seizure” conjured the image of violent convulsions. I, on the other hand, was experiencing types of seizures that I had never heard of, focal seizures with alerted awareness and complex partial seizures. My seizures felt like out-of-body experiences. I would stare into space, twitch, then lose complete control over my body and go limp while I drooled. In the months after my diagnosis, my seizures became more obvious. As part of my regular monitoring, my neurologist asked me to record how many seizures I was experiencing per day. One day, I called to tell him I experienced 90 seizures before 5 p.m. He told me to come to the hospital immediately. Upon arrival, I was put in a coma to protect my brain from more seizures. When I awoke, my neurologist told me I had experienced 156 seizures in 24 hours. That’s when my epilepsy treatment journey started. Over the next five years, I tried dozens of medications. One medicine wouldn’t work, so we would move on to the next and the next, managing to bring my seizures down to a few dozen per day. Eventually, my parents suggested I get another opinion, but I was unsure. I was worried that I would insult my doctor. During an open conversation with him, however, he surprised me. He encouraged me to seek a second opinion, and I credit him for ultimately helping me toward a solution – albeit through another provider. I flew from Connecticut to Maryland to meet my new doctors, and it was worth every mile. I immediately had surgery to remove 90 percent of my left hippocampus, the part of the brain that controls short-term memory. With no more short-term memory, which meant no way to memorize my lines, I was forced to quit school and say goodbye to theater. Though the surgery worked in reducing the number of seizures I was having, I continued to have seizures over the years. As I grew older and more experienced in my diagnosis, I became more comfortable with taking an active role in my care. I quickly realized what a collaborative doctor-patient relationship looked like and how essential it was to finding a treatment plan that worked for me. When I wasn’t responding to the surgery or medications the way my doctor and I hoped, we continued to explore new options. He encouraged me to keep pushing, and in turn, I fought hard for results. Once, he told me about a clinical trial for a potential epilepsy treatment and asked if I wanted to participate. He mentioned that in clinical trials, the drug — now known as [XCOPRI®](http://www.XCOPRI.com) (cenobamate tablets) CV— had the potential to significantly reduce partial-onset seizure frequency. My doctor informed me that any new medicine I try has risks and benefits, and we discussed [all of the potential side effects](#ISI) of [XCOPRI®](http://www.xcopri.com), including the most common side effects such as dizziness, sleepiness, headache, double vision, and feeling tired. I was hopeful and decided I could do this. ***Please see full* [*Prescribing Information*](https://www.xcopri.com/wp-content/uploads/2020/09/SK_Prescribing_Information_Med_Guide_Combined.pdf) *and* [*Important Safety Information*](https://www.xcopri.com/) *for more information about XCOPRI®. Mary Kate’s experience is her own. Individual results may vary. Always talk to your doctor with any questions*** I flew to the trial site in Maryland weekly to receive the medication. Per treatment instructions of the study, my doctor slowly increased my dose, and that’s when I started to see a change. While the results will differ for each person, as I continued my treatment with [XCOPRI®,](http://www.XCOPRI.com) I experienced fewer seizures. I went from having multiple seizures a day to having only a handful in a three-month period. [XCOPRI®](https://www.xcopri.com/) was working for me. After 12 years, it felt strange not experiencing a seizure throughout the day, but it was a welcomed change. Today, two years after my initial dose of [XCOPRI®](https://www.xcopri.com/), I only experience seizures once every six weeks. I’m so appreciative of my doctors, family and friends for their continued support and for never giving up. Although I experience infrequent seizures now, I celebrate them as a reminder of how far I’ve come in my epilepsy journey. Epilepsy changed my life in many different ways. I continue to wake up every morning and remind myself of three things that I am grateful for. I stand with the more than 3 million other Americans who also gain their strength from epilepsy. This condition isn’t something we have to face alone. By sharing our stories, we can give one another the strength and confidence to keep moving forward together. **For more information about XCOPRI®, please visit** [www.xcopri.com](http://www.xcopri.com)**.** #### **IMPORTANT SAFETY INFORMATION AND INDICATION FOR XCOPRI® (cenobamate tablets) CV** **DO NOT TAKE XCOPRI IF YOU:** - Are allergic to cenobamate or any of the other ingredients in XCOPRI. - Have a genetic problem (called Familial Short QT syndrome) that affects the electrical system of the heart. **XCOPRI CAN CAUSE SERIOUS SIDE EFFECTS, INCLUDING:** **Allergic reactions: XCOPRI can cause serious skin rash or other serious allergic reactions which may affect organs and other parts of your body like the liver or blood cells.** You may or may not have a rash with these types of reactions. Call your healthcare provider right away and go to the nearest emergency room if you have any of the following: swelling of your face, eyes, lips, or tongue, trouble swallowing or breathing, a skin rash, hives, fever, swollen glands, or sore throat that does not go away or comes and goes, painful sores in the mouth or around your eyes, yellowing of your skin or eyes, unusual bruising or bleeding, severe fatigue or weakness, severe muscle pain, frequent infections, or infections that do not go away. **Take XCOPRI exactly as your healthcare provider tells you to take it. It is very important to increase your dose of XCOPRI slowly, as instructed by your healthcare provider.** **QT shortening: XCOPRI may cause problems with the electrical system of the heart (QT shortening).** Call your healthcare provider if you have symptoms of QT shortening including fast heartbeat (heart palpitations) that last a long time or fainting. **Suicidal behavior and ideation:** Antiepileptic drugs, including XCOPRI, may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call your health care provider right away if you have any of the following symptoms, especially if they are new, worse, or worry you: thoughts about suicide or dying; attempting to commit suicide; new or worse depression, anxiety, or irritability; feeling agitated or restless; panic attacks; trouble sleeping (insomnia); acting aggressive; being angry or violent; acting on dangerous impulses; an extreme increase in activity and talking (mania); or other unusual changes in behavior or mood. **Nervous system problems:** XCOPRI may cause problems that affect your nervous system. Symptoms of nervous system problems include: dizziness, trouble walking or with coordination, feeling sleepy and tired, trouble concentrating, remembering, and thinking clearly, and vision problems. **Do not drive, operate heavy machinery, or do other dangerous activities until you know how XCOPRI affects you.** **Do not drink alcohol or take other medicines that can make you sleepy or dizzy while taking XCOPRI without first talking to your healthcare provider.** **DISCONTINUATION:** **Do not stop taking XCOPRI without first talking to your healthcare provider**. Stopping XCOPRI suddenly can cause serious problems. Stopping seizure medicine suddenly in a patient who has epilepsy can cause seizures that will not stop (status epilepticus). **DRUG INTERACTIONS:** XCOPRI may affect the way other medicines work, and other medicines may affect how XCOPRI works. **Do not start or stop other medicines without talking to your healthcare provider**. Tell healthcare providers about all the medicines you take, including prescription and over-the-counter medicines, vitamins and herbal supplements. **PREGNANCY AND LACTATION:** XCOPRI may cause your birth control medicine to be less effective. **Talk to your health care provider about the best birth control method to use.** **Talk to your health care provider if you are pregnant or plan to become pregnant.** It is not known if XCOPRI will harm your unborn baby. Tell your healthcare provider right away if you become pregnant while taking XCOPRI. You and your healthcare provider will decide if you should take XCOPRI while you are pregnant. If you become pregnant while taking XCOPRI, talk to your healthcare provider about registering with the North American Antiepileptic Drug (NAAED) Pregnancy Registry. The purpose of this registry is to collect information about the safety of antiepileptic medicine during pregnancy. You can enroll in this registry by calling 1-888-233-2334 or go to www.aedpregnancyregistry.org. **Talk to your health care provider if you are breastfeeding or plan to breastfeed.** It is not known if XCOPRI passes into breastmilk. Talk to your healthcare provider about the best way to feed your baby while taking XCOPRI. **COMMON SIDE EFFECTS:** The most common side effects in patients taking XCOPRI include dizziness, sleepiness, headache, double vision, and feeling tired. These are not all the possible side effects of XCOPRI. Tell your healthcare provider if you have any side effect that bothers you or that does not go away. For more information, ask your healthcare provider or pharmacist. **Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088 or at www.fda.gov/medwatch.** **DRUG ABUSE:** **XCOPRI is a federally controlled substance (CV) because it can be abused or lead to dependence.** Keep XCOPRI in a safe place to prevent misuse and abuse. Selling or giving away XCOPRI may harm others and is against the law. **INDICATION:** XCOPRI is a prescription medicine used to treat partial-onset seizures in adults 18 years of age and older. It is not known if XCOPRI is safe and effective in children under 18 years of age. Please see additional patient information in the [Medication Guide](https://xcoprihcp.com/resources/pdf/SK_Med_Guide.pdf). This information does not take the place of talking with your healthcare provider about your condition or your treatment. Please see full [Prescribing Information](https://xcoprihcp.com/resources/pdf/SK_Prescribing_Information_Med_Guide_Combined.pdf) ![author avatar](https://secure.gravatar.com/avatar/93904e37c4f84afe5bfee7b5dcb61d2453e66afd00a0283fb2e9dcdaa03cf505?s=300&d=mm&r=g) Mary Kate O'Donnell A 31-year-old former actress, American sign language interpreter, daughter, friend and sister – Mary Kate O’Donnell has been living with epilepsy since she was 19 years old. She is committed to inspiring the epilepsy community to push for more than “good enough” when it comes to seizure-freedom. [See Full Bio](https://livingwellwithepilepsy.com/author/mary-kate) [ ](https://livingwellwithepilepsy.com/author/mary-kate) **Categories:** Treatments **Tags:** xcopri --- ### [Fighting for the Possibility of Zero Seizures](https://livingwellwithepilepsy.com/aboutepilepsy/treatments/fighting-for-the-possibility-of-zero-seizures.html) **Published:** November 15, 2021 **Author:** Jessica K. Smith **Excerpt:** XCOPRI® patient Koral knows the challenges of living with epilepsy and the significance of potentially living with zero seizures. **Content:** #### **[![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/11/Koral-Image.png "Koral Image – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2021/11/Koral-Image.png)**Koral on Zero Seizures *Advocating for yourself is the first step on the journey toward seizure freedom* **Scroll down for [Important Safety Information](#safetyinfo20).** **[SK Life Science, Inc](https://livingwellwithepilepsy.com/partners/sklifescience).**, the maker of XCOPRI® (cenobamate tablets) CV, a treatment for partial-onset seizures in adults, is an innovative global pharmaceutical company focused on developing treatments for central nervous system disorders. Learn about XCOPRI® patient Koral’s journey with epilepsy and the importance of advocating for yourself in the fight for zero seizures. ***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** *This blog post was submitted by SK life science, the lead sponsor of the November 2021 Epilepsy Blog Relay.* #### Uncontrolled Epilepsy There are approximately 3.4 million people living with epilepsy in the United States, and although zero seizures is recognized as the optimal treatment goal, almost 40 percent of people with epilepsy continue to have seizures.1-3 Uncontrolled epilepsy can put roadblocks in place for people living with the disease, ranging from being unable to drive, to challenges at school and work – even potentially derailing their goals.4 [![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/02/PM-US-XCOP-0481_Patient-Testimonial-Banner-Ads_Koral_728x90-1024x195.jpg "PM-US-XCOP-0481_Patient Testimonial Banner Ads_Koral_728x90 – Living Well With Epilepsy")](https://www.youtube.com/watch?v=nj_a597N4nc) #### Koral’s Story XCOPRI® patient Koral knows the challenges of living with epilepsy and the significance of potentially living with zero seizures. [Learn more about Koral’s journey](https://www.youtube.com/watch?v=nj_a597N4nc). #### ***“Don’t ever settle for anything less than you deserve.”*** Before starting on XCOPRI®, Koral’s doctor prescribed her allergy medicine, misdiagnosing her epilepsy as bad allergies. She began having more frequent and more intense episodes, not knowing she was experiencing multiple partial-onset seizures a day. After years of being misdiagnosed, Koral’s passion for teaching children with autism inspired her to advocate for herself, leading her to meet the neurologist who diagnosed her with epilepsy and introduced her to XCOPRI®. **Koral now has one seizure a month, or even less.** #### ***“With those reductions, I feel like I’m in charge of my life again.* *Don’t ever settle for anything less than you deserve,” Koral says.*** Today, Koral is starting graduate school and she is using her voice to encourage the Hispanic community to continue to seek answers for their medical issues. ***Learn more about another* [*XCOPRI® patient story*](https://www.youtube.com/watch?v=31tGDGPgDXY) *and common* [*epilepsy misconceptions*](https://www.wellandgood.com/epilepsy-misconceptions-xcopri/)*.*** Everyone’s epilepsy is unique, and treatments work differently from person to person. Like Koral and other XCOPRI® patients, SK life science encourages people with epilepsy to be their own advocate and never settle for a treatment regimen that isn’t helping them reach their goals. If you have epilepsy, know you are not alone in your fight for zero seizures. Speak with your healthcare professional to learn if [XCOPRI®](https://www.xcopri.com/) is the right treatment for you. #### References 1. CURE Epilepsy. What is epilepsy? . Accessed October 22, 2021. 2. Halford, Edwards. Seizure freedom as an outcome in epilepsy treatment clinical trials. . Published online May 20, 2020. 3. National Institute of Neurological Disorders and Stroke. The Epilepsies and Seizures: Hope Through Research. . Accessed October 22, 2021. 4. Epilepsy Foundation. Challenges with Epilepsy: Social Concerns. . Accessed October 22, 2021. **For more information about XCOPRI®, please visit** [**https://www.xcopri.com/**](https://www.xcopri.com/)**.** #### [IMPORTANT SAFETY INFORMATION AND INDICATION FOR XCOPRI® (cenobamate tablets) CV](#safetyinfo20) **DO NOT TAKE XCOPRI IF YOU:** Are allergic to cenobamate or any of the other ingredients in XCOPRI. Have a genetic problem (called Familial Short QT syndrome) that affects the electrical system of the heart. **XCOPRI CAN CAUSE SERIOUS SIDE EFFECTS, INCLUDING:** Allergic reactions: XCOPRI can cause serious skin rash or other serious allergic reactions which may affect organs and other parts of your body like the liver or blood cells. You may or may not have a rash with these types of reactions. Call your healthcare provider right away and go to the nearest emergency room if you have any of the following: swelling of your face, eyes, lips, or tongue, trouble swallowing or breathing, a skin rash, hives, fever, swollen glands, or sore throat that does not go away or comes and goes, painful sores in the mouth or around your eyes, yellowing of your skin or eyes, unusual bruising or bleeding, severe fatigue or weakness, severe muscle pain, frequent infections, or infections that do not go away. Take XCOPRI exactly as your healthcare provider tells you to take it. It is very important to increase your dose of XCOPRI slowly, as instructed by your healthcare provider. QT shortening: XCOPRI may cause problems with the electrical system of the heart (QT shortening). Call your healthcare provider if you have symptoms of QT shortening including fast heartbeat (heart palpitations) that last a long time or fainting. Suicidal behavior and ideation: Antiepileptic drugs, including XCOPRI, may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call your health care provider right away if you have any of the following symptoms, especially if they are new, worse, or worry you: thoughts about suicide or dying; attempting to commit suicide; new or worse depression, anxiety, or irritability; feeling agitated or restless; panic attacks; trouble sleeping (insomnia); acting aggressive; being angry or violent; acting on dangerous impulses; an extreme increase in activity and talking (mania); or other unusual changes in behavior or mood. Nervous system problems: XCOPRI may cause problems that affect your nervous system. Symptoms of nervous system problems include: dizziness, trouble walking or with coordination, feeling sleepy and tired, trouble concentrating, remembering, and thinking clearly, and vision problems. Do not drive, operate heavy machinery, or do other dangerous activities until you know how XCOPRI affects you. Do not drink alcohol or take other medicines that can make you sleepy or dizzy while taking XCOPRI without first talking to your healthcare provider. **DISCONTINUATION:** Do not stop taking XCOPRI without first talking to your healthcare provider. Stopping XCOPRI suddenly can cause serious problems. Stopping seizure medicine suddenly in a patient who has epilepsy can cause seizures that will not stop (status epilepticus). **DRUG INTERACTIONS:** XCOPRI may affect the way other medicines work, and other medicines may affect how XCOPRI works. Do not start or stop other medicines without talking to your healthcare provider. Tell healthcare providers about all the medicines you take, including prescription and over-the-counter medicines, vitamins and herbal supplements. **PREGNANCY AND LACTATION:** XCOPRI may cause your birth control medicine to be less effective. Talk to your health care provider about the best birth control method to use. Talk to your health care provider if you are pregnant or plan to become pregnant. It is not known if XCOPRI will harm your unborn baby. Tell your healthcare provider right away if you become pregnant while taking XCOPRI. You and your healthcare provider will decide if you should take XCOPRI while you are pregnant. If you become pregnant while taking XCOPRI, talk to your healthcare provider about registering with the North American Antiepileptic Drug (NAAED) Pregnancy Registry. The purpose of this registry is to collect information about the safety of antiepileptic medicine during pregnancy. You can enroll in this registry by calling 1-888-233-2334 or go to www.aedpregnancyregistry.org. Talk to your health care provider if you are breastfeeding or plan to breastfeed. It is not known if XCOPRI passes into breastmilk. Talk to your healthcare provider about the best way to feed your baby while taking XCOPRI. **COMMON SIDE EFFECTS:** The most common side effects in patients taking XCOPRI include dizziness, sleepiness, headache, double vision, and feeling tired. These are not all the possible side effects of XCOPRI. Tell your healthcare provider if you have any side effect that bothers you or that does not go away. For more information, ask your healthcare provider or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088 or at www.fda.gov/medwatch. **DRUG ABUSE:** XCOPRI is a federally controlled substance (CV) because it can be abused or lead to dependence. Keep XCOPRI in a safe place to prevent misuse and abuse. Selling or giving away XCOPRI may harm others and is against the law. **INDICATION:** XCOPRI is a prescription medicine used to treat partial-onset seizures in adults 18 years of age and older. It is not known if XCOPRI is safe and effective in children under 18 years of age. Please see additional patient information in the [Medication Guide](https://xcoprihcp.com/resources/pdf/SK_Med_Guide.pdf). This information does not take the place of talking with your healthcare provider about your condition or your treatment. Please see full [Prescribing Information](https://xcoprihcp.com/resources/pdf/SK_Prescribing_Information_Med_Guide_Combined.pdf). \### ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Treatments **Tags:** xcopri --- ### [Epilepsy Blog Relay: Racing Toward Seizure Freedom](https://livingwellwithepilepsy.com/aboutepilepsy/treatments/epilepsy-blog-relay-racing-toward-seizure-freedom.html) **Published:** April 12, 2022 **Author:** Jessica K. Smith **Excerpt:** Former TV news anchor and marathon runner Sarah Carlson shares about her journey with epilepsy as she races toward seizure freedom. **Content:** **![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/04/IMG_3853-1024x683.jpg "IMG_3853 – Living Well With Epilepsy")Former TV news anchor and marathon runner Sarah Carlson shares about her journey with epilepsy** This story is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay). *This blog post was submitted by [SK Life Science, Inc.](https://livingwellwithepilepsy.com/partners/sklifescience), the Founding Sponsor of the April 2022 [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) and written by Sarah Carlson. Sarah is a real patient acting on behalf of SK life science.* **[Scroll down for Important Safety Information](#safetyinfo22)** SK Life Science, Inc. is an innovative global pharmaceutical company focused on developing treatments for central nervous system disorders. Learn from Sarah Carlson as she shares her journey with epilepsy and message to the epilepsy community to continue advocating for yourself in your fight for seizure freedom. #### **I Had Seizures on Live TV** As a TV anchor, you become a trusted voice in your community on the most important news. Then imagine that one day your voice is not entirely within your control. That’s what happened to me when I had seizures on live TV. Being unconscious, I don’t remember them. But if I could, I’d rather remember the seizure instead of the moment I regained consciousness. Nothing can allow you to comprehend or be prepared for the “stare” of close friends, family, co-workers and sometimes first responders—looking at me, holding my hand, asking me questions and scared to death. I’d always get a sinking feeling in that moment. “Oh no, not again.” The seizures have happened thousands of times, but, luckily, only a few have ever been caught on TV. I was 32, and working as a news anchor in Madison, Wisconsin in 2008, when I was officially diagnosed with epilepsy. I suddenly started noticing that things just didn’t feel right. I would feel confused or dizzy while reading the teleprompter on set, but my team told me that I was ok, so I’d keep going. My seizures started out mild, so it took doctors months to diagnose me with epilepsy. It took an additional two years before they were able to find the brain tumor that caused it. Thankfully, the tumor was easy to remove, so I didn’t have to fight cancer. Instead, I had a different fight ahead: a fight for those with epilepsy, myself included. #### **A Seizure Goes Viral** The worst seizure I experienced occurred shortly after my diagnosis. I collapsed onto my morning show co-anchor during a live taping and had to be rushed to the ER. And while our viewers knew something was wrong, the seizure occurred off-camera, so I was spared from the clip going viral on the internet. However, that didn’t last. Four years later, some viewers decided to record and post one of my on-camera seizures online. And while my epilepsy was much less severe and much better managed by this point, the emotional toll of the post and users’ comments were brutal. Far too many of the comments suggested I was “evil” because of my seizures. I did my best to ignore it and move on, but the experience opened my eyes to the widespread nature of negative stigma attached to epilepsy. Today, I encourage others to watch the clip to better understand how shocking and horrible it is to experience a seizure, and also to understand how hurtful negative comments and stereotypes made about people living with epilepsy can be. I want those fighting epilepsy to know that there is nothing to hide. #### **Fighting for Better Seizure Control** One of the things I’ve learned in my journey to better manage my epilepsy is that the hardest part of the fight is controlling seizures; many patients can’t find a medication that works for them. Several doctors told me that if after the first few medications I tried my epilepsy still wasn’t in control, it never would be. I tried about a dozen different medications over the years, many with various side effects. It was my current epileptologist, Dr. Michael Smith at Rush University in Chicago, who was committed to helping me become seizure free. He recommended I take XCOPRI® (cenobamate tablets) CV, which I started on in August 2020. Nearly 12 years after my initial epilepsy diagnosis, I am now seizure free. #### **Running with Seizures, Not From Them** When my journey with epilepsy started, I was also a newly single mother of two children. I knew I had no other option than to keep moving forward—personally and professionally. I needed to show myself, my children, and my community that epilepsy was not the end. My seizures were unpredictable. Ultimately, they led me to stop working as a news anchor and to give up my driver’s license. Still, I refused to let my seizures define me. In 2012, I started running marathons, fundraising every year for those with brain tumors as well as epilepsy. I found running to be cathartic, giving me a freedom I didn’t otherwise have. I used to run with a volunteer aid because it wasn’t safe for me to run alone. In 2018, I had three seizures during a race, but my guide still helped me finish in under four hours. She knew my goal was to run with seizures, not from them. Persistence, determination, and hope drove me to cross the finish line. Thanks to the better management of my seizures, I can now run for the cause with a remarkable feeling of independence and peace. #### [*Learn about the steps you can take in your pursuit of zero seizures*](https://www.stepstowardzero.com/)*.* Your epilepsy is unique to you, and seizure treatments work differently from person to person. Like Sarah and other XCOPRI® patients, SK life science encourages people with epilepsy to be their own advocate and stay persistent in their search for the treatment regimen that helps them reach their goals. If you have epilepsy, know you are not alone in your fight for seizure freedom. Speak with your healthcare provider to learn if [XCOPRI®](https://www.xcopri.com/) is the right treatment for you. **For more information about XCOPRI®, please visit** [**https://www.xcopri.com/**](https://www.xcopri.com/)**.** ## IMPORTANT SAFETY INFORMATION AND INDICATION FOR XCOPRI® (cenobamate tablets) CV **DO NOT TAKE XCOPRI IF YOU:** - Are allergic to cenobamate or any of the other ingredients in XCOPRI. - Have a genetic problem (called Familial Short QT syndrome) that affects the electrical system of the heart. **XCOPRI CAN CAUSE SERIOUS SIDE EFFECTS, INCLUDING:** **Allergic reactions: XCOPRI can cause serious skin rash or other serious allergic reactions which may affect organs and other parts of your body like the liver or blood cells.** You may or may not have a rash with these types of reactions. Call your healthcare provider right away and go to the nearest emergency room if you have any of the following: swelling of your face, eyes, lips, or tongue, trouble swallowing or breathing, a skin rash, hives, fever, swollen glands, or sore throat that does not go away or comes and goes, painful sores in the mouth or around your eyes, yellowing of your skin or eyes, unusual bruising or bleeding, severe fatigue or weakness, severe muscle pain, frequent infections, or infections that do not go away. **Take XCOPRI exactly as your healthcare provider tells you to take it. It is very important to increase your dose of XCOPRI slowly, as instructed by your healthcare provider.** **QT shortening: XCOPRI may cause problems with the electrical system of the heart (QT shortening).** Call your healthcare provider if you have symptoms of QT shortening including fast heartbeat (heart palpitations) that last a long time or fainting. **Suicidal behavior and ideation:** Antiepileptic drugs, including XCOPRI, may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call your health care provider right away if you have any of the following symptoms, especially if they are new, worse, or worry you: thoughts about suicide or dying; attempting to commit suicide; new or worse depression, anxiety, or irritability; feeling agitated or restless; panic attacks; trouble sleeping (insomnia); acting aggressive; being angry or violent; acting on dangerous impulses; an extreme increase in activity and talking (mania); or other unusual changes in behavior or mood. **Nervous system problems:** XCOPRI may cause problems that affect your nervous system. Symptoms of nervous system problems include: dizziness, trouble walking or with coordination, feeling sleepy and tired, trouble concentrating, remembering, and thinking clearly, and vision problems. **Do not drive, operate heavy machinery, or do other dangerous activities until you know how XCOPRI affects you.** **Do not drink alcohol or take other medicines that can make you sleepy or dizzy while taking XCOPRI without first talking to your healthcare provider.** **DISCONTINUATION:** **Do not stop taking XCOPRI without first talking to your healthcare provider.** Stopping XCOPRI suddenly can cause serious problems. Stopping seizure medicine suddenly in a patient who has epilepsy can cause seizures that will not stop (status epilepticus). **DRUG INTERACTIONS:** XCOPRI may affect the way other medicines work, and other medicines may affect how XCOPRI works. **Do not start or stop other medicines without talking to your healthcare provider.** Tell healthcare providers about all the medicines you take, including prescription and over-the-counter medicines, vitamins and herbal supplements. **PREGNANCY AND LACTATION:** XCOPRI may cause your birth control medicine to be less effective. **Talk to your health care provider about the best birth control method to use.** **Talk to your health care provider if you are pregnant or plan to become pregnant.** It is not known if XCOPRI will harm your unborn baby. Tell your healthcare provider right away if you become pregnant while taking XCOPRI. You and your healthcare provider will decide if you should take XCOPRI while you are pregnant. If you become pregnant while taking XCOPRI, talk to your healthcare provider about registering with the North American Antiepileptic Drug (NAAED) Pregnancy Registry. The purpose of this registry is to collect information about the safety of antiepileptic medicine during pregnancy. You can enroll in this registry by calling 1-888-233-2334 or go to www.aedpregnancyregistry.org. **Talk to your health care provider if you are breastfeeding or plan to breastfeed.** It is not known if XCOPRI passes into breastmilk. Talk to your healthcare provider about the best way to feed your baby while taking XCOPRI. **COMMON SIDE EFFECTS:** The most common side effects in patients taking XCOPRI include dizziness, sleepiness, headache, double vision, and feeling tired. These are not all the possible side effects of XCOPRI. Tell your healthcare provider if you have any side effect that bothers you or that does not go away. For more information, ask your healthcare provider or pharmacist. **Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088** or at . **DRUG ABUSE:** **XCOPRI is a federally controlled substance (CV) because it can be abused or lead to dependence.** Keep XCOPRI in a safe place to prevent misuse and abuse. Selling or giving away XCOPRI may harm others and is against the law. **INDICATION:** XCOPRI is a prescription medicine used to treat partial-onset seizures in adults 18 years of age and older. It is not known if XCOPRI is safe and effective in children under 18 years of age. Please see additional patient information in the [Medication Guide](https://xcoprihcp.com/resources/pdf/SK_Med_Guide.pdf). This information does not take the place of talking with your healthcare provider about your condition or your treatment. **Please see full** [**Prescribing Information**](https://xcoprihcp.com/resources/pdf/SK_Prescribing_Information_Med_Guide_Combined.pdf) **and** [**Medication Guide**](https://www.xcopri.com/wp-content/uploads/2020/09/SK_Med_Guide.pdf)**.** ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Treatments **Tags:** Brain tumor, drivers license, managing epilepsy, running, xcopri --- ### [4 Tips to help you track seizures](https://livingwellwithepilepsy.com/aboutepilepsy/seizure-triggers/keep-track-of-your-seizures.html) **Published:** August 19, 2022 **Author:** Jewel Gibson **Excerpt:** Jewel shares a few tips on how to keep track of your seizures. We hope this helps as you move through your own epilepsy journey. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/jewel-768x1024.jpg "jewel – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/jewel-scaled.jpg) #### A system to track seizures A couple of years and a few hundred seizures later I realized that I needed a system to help track seizures and to help me understand them. It felt there wasn’t as much research, apps or support as it is now within this community. I was certain once I found a way to log my seizures and triggers it would be easier to maintain. I was sure tracking this information would help prevent a lot of them from happening moving forward. I’m an old school kinda girl, so I still use pen and paper to take notes and journal. I also use a paper planner because it is easier to reference it than it seems digitally. Understanding how important it is to track seizures allows me to share health experiences with my physicians and family members. #### 1. Keep a Seizure Diary Whether you decide on a journal or an app to [keep track of your seizures](https://livingwellwithepilepsy.com/2017/livingwell/leilas-ideas-epilepsy-resolutions.html), just the action of recording this information can help. You may even find better ways to negotiate the ups and downs of your daily life. It is helpful not only to record the information, but to also look back at the journal / app and use the information to help inform your decisions. The information you gather can be useful when making decisions about the meds you are taking, to meds you’ve changed, or even determining when treatment doesn’t seem to help eliminate the seizures. Here are a few apps to try: Epilepsy Foundation’s Seizure Diary: Seizure Tracker: Health Storylines: These apps are self-management tools for seizures and epilepsy. They focuses on self-monitoring and tracking seizures and other symptoms. #### 2. Journaling Journaling is another great way to keep track seizures as well. It’s just as accessible as your apps and for some it’s easier to manage and maintain the information. I have kept a seizure journal since 2008. It isn’t as extensive as I would have liked it to be nor does it have ALL of the necessary information because I would forget to update it \[memory issues due to seizures\]. However, It is helpful to look at how far I’ve come in this journey. #### 3. Organized Health Info Keeping up with all your health information can be a challenge. Using an app or a paper journal can help eliminate the anxiety of having to remember or keep track of random papers you need when you visit the physicians. Having the information all in one place makes it super easy for me to recall my seizures and other health experiences when I go to the doctor. It is also helpful to monitor the change of your medications and test results over time. Because I have kept really good records of my seizures and the medications I was on, I was able to reduce my medications when my husband and I [planned to have a baby](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/seizures-pregnancy-and-epilepsy-in-real-life.html). The information was impactful to the level of care and concern my team of doctors had during my pregnancy. #### 4. Track Your Triggers Each of us have different situations, things, foods, temperature, movements etc. that can trigger a seizure. Some you may be able to identify these triggers automatically, while others may take a little more time to discover. I didn’t realize many of my triggers until almost 2 years into this journey. Initially, I wasn’t writing down my seizures or my daily activities, so I couldn’t keep track of things the way I should. Once I began writing down what I thought could have caused my seizure it became easier to eliminate certain behaviors and foods from my lifestyle to decrease the number of seizures I experienced. These are just a few tips on how to keep track of your seizures. I hope this helps as you move through your own epilepsy journey. Please share some of your own tips and suggestions below! ![author avatar](https://secure.gravatar.com/avatar/c1aba6d0d67a384b767cb68f59c824d135de8a13aaafee6f345a2f92f10de560?s=300&d=mm&r=g) Jewel Gibson Jewel Gibson, fondly known as "Life's a Jewel," is an epilepsy advocate, an educator, avid reader, plant lover, city girl and all around great momma and wife. [See Full Bio](https://livingwellwithepilepsy.com/author/jgib) [ ](https://livingwellwithepilepsy.com/author/jgib) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/lifesajewel) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://www.twitter.com/lifesajewel_) **Categories:** Seizure Triggers **Tags:** seizure diary, seizure tracking --- ### [Epilepsy Blog Relay: Learn How to Make Yours Seizure Safe Schools](https://livingwellwithepilepsy.com/aboutepilepsy/seizure-action-plans/seizure-safe-schools.html) **Published:** November 6, 2022 **Author:** Guest Contributor **Excerpt:** Colleen and Paul, a teen newly diagnosed with epilepsy, are on a mission to make seizure safe schools a requirement nationwide. **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/11/Screen-Shot-2022-11-05-at-1.49.38-PM-e1667670678375-1024x596.png "Screen Shot 2022-11-05 at 1.49.38 PM – Living Well With Epilepsy")*Photo courtesy of The Courier Post*## Seizure Safe Schools Colleen and Paul, a teen newly diagnosed with epilepsy, are on a mission to make seizure safe schools a requirement nationwide. In 2019, my son Paul and I worked on Seizure Safe Schools in New Jersey. [Paul’s Law](https://www.courierpostonline.com/story/news/local/south-jersey/2019/09/13/seizure-safety-bill-pauls-law-introduced-nj-requires-training-schools-help-kids-epilepsy/2310805001/) was passed in 2020 and we were so happy to know all [school employees would be trained](https://epilepsyservicesnj.org/pauls-law/) and all students with epilepsy would have [seizure action plans](https://www.epilepsy.com/sites/default/files/atoms/files/GENERAL%20Seizure%20Action%20Plan%202020-April7_FILLABLE.pdf). However we were only the 5th state with this legislation. Since passing Paul’s Law I have established a facebook page and a website and recruited 2 friends who worked to pass Sam’s Law in Texas (Shari Dudo) and Kentucky Lyndsey Crunk Act (Cyndi Crunk ) to join me to mentor people who wanted to work on seizure safe schools in their states. Together we have assisted folks in Virginia, Missouri, Arizona, and Louisiana. We are currently helping people in South Carolina and Georgia. If you are interested in being a part of our movement to keep our children safe please join us on facebook @[National Epilepsy Advocates for Seizure Safe Schools](https://www.facebook.com/groups/439303240050002). We have 30 states that need this legislation! ## More Background on Colleen and Paul ## Paul’s Law [Epilepsy Services of NJ (ESNJ)](https://epilepsyservicesnj.org/pauls-law/) is a state approved provider of the seizure recognition and first aid training. ESNJ understands the importance of training school personnel about seizure first aid, and has been providing seizure recognition and first aid training to school-aged youth, school nurses, school personnel, and first responders for over 30 years. These programs help to educate and raise awareness about epilepsy and seizure disorders while providing life-saving seizure first aid training. ESNJ trains thousands of individuals annually. Paul’s Law requires that all school personnel are trained in seizure recognition and first aid and that school districts have an individualized seizure action plan for each student who has epilepsy. ## Learn More To learn more about bringing Seizure Safe Schools laws to your state, connect with Colleen via the facebook group at [National Epilepsy Advocates for Seizure Safe Schools](https://www.facebook.com/groups/439303240050002). ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Seizure Action Plans **Tags:** #paulslaw, #seizureactionplan, #seizuresafeschools --- ### [Tune into Your Body: Mindfulness for Detecting Early Seizure Signs](https://livingwellwithepilepsy.com/life-with-epilepsy/mentalhealth/tune-into-your-body-mindfulness-for-detecting-early-seizure-signs.html) **Published:** October 1, 2024 **Author:** Jessica K. Smith **Excerpt:** Mindfulness is a powerful DBT skill that can significantly enhance your ability to manage epilepsy by detecting early seizure signs. **Content:** ## [![Mindfulness and Epilepsy](https://livingwellwithepilepsy.com/wp-content/uploads/2024/07/7-1024x1024.jpg "Mindfulness and Epilepsy – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2024/07/7.jpg)Mindfulness for Detecting Early Seizure Signs Mindfulness is a powerful skill that can significantly enhance your ability to manage epilepsy by detecting early seizure signs. Of course this is done in addition to medication to manage seizures, not as a replacement. By tuning into your body through mindfulness, you can in some cases detect early seizure signs and take proactive steps to prevent seizures by taking preventative measures such as resting or taking additional medication. This heightened awareness helps you stay present, reduce stress, and improve your overall well-being. [More Epilepsy and Mental Health Articles ](https://livingwellwithepilepsy.com/category/mentalhealth) ## Mindfulness in Epilepsy Management Mindfulness involves staying present and fully engaged in the moment, paying attention to your thoughts, feelings, and bodily sensations without judgment. This can be difficult when you are new to epilepsy. It can feel like your body has failed you. So it can be really hard to listen to your body without judgement. However by removing judgement, mindfulness can help detect early seizure signs by increasing awareness of subtle changes and sensations in the body. This heightened [awareness allows us to recognize potential seizure](https://livingwellwithepilepsy.com/2023/initaitives/mark-your-calendar-for-seizure-action-plan-awareness-week.html) triggers and early warning signs, letting us to take proactive steps to manage our epilepsy. ## Mindfulness in Your Daily Routine Start with simple mindfulness practices, such as deep breathing, body scans, and mindful observation. Set aside a few minutes each day for mindfulness, gradually increasing the duration as you become more comfortable. Over time, these practices will become a natural part of your routine, helping you stay present and aware. Here are some practical mindfulness techniques to help you tune into your body: - **Deep Breathing:** Focus on your breath, inhaling deeply through your nose and exhaling slowly through your mouth. Pay attention to the sensation of your breath entering and leaving your body. - **Body Scan:** Slowly move your attention through different parts of your body, noticing any sensations, tension, or discomfort. Start from your toes and work your way up to your head. - **Mindful Observation:** Observe your surroundings with full attention, noticing the details of what you see, hear, smell, and feel. Stay present and engaged in the moment. ## Tune Into Your Body Mindfulness is a powerful tool for detecting early seizure signs and managing epilepsy. By tuning into your body and practicing mindfulness regularly, you can increase your awareness, reduce stress, and improve your overall well-being. Start incorporating mindfulness into your daily routine and discover the benefits of staying present and aware. Enhance your epilepsy management with mindfulness and take proactive steps to prevent seizures. And remember this doesn’t replace taking your anti-seizure meds. You need both in place to make this work. [Learn More About Epilepsy Coaching ](https://livingwellwithepilepsy.com/epilepsy-health-coach-programs) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Mental Health **Tags:** #epilepsycoach --- ### [How 3 seizure triggers can guide your New Year's Resolutions](https://livingwellwithepilepsy.com/aboutepilepsy/seizure-triggers/seizure-triggers-guide-resolutions.html) **Published:** December 13, 2025 **Author:** Jessica K. Smith **Excerpt:** As we head into the new year I wanted to share some tips on how your seizure triggers can help guide your New Year's Resolutions. **Content:** *This story is sponsored by Epilepsy Wellness Advocates and The Charles L. Shor Epilepsy Opportunity Fund* [![New Years Resolution](https://livingwellwithepilepsy.com/wp-content/uploads/2025/12/newyearseve-600x577.jpg "newyearseve – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-wellness/seizure-triggers-guide-resolutions.html/attachment/newyearseve)Hope you all are having a wonderful holiday season and are leaning into your mindfulness and [gratitude skills](https://livingwellwithepilepsy.com/epilepsy-wellness/integrate-dbt-into-daily-life-morning-mindfulness-to-evening-reflection.html "Managing Stress with Epilepsy by Integrating Gratitude") to help with your epilepsy. As we head into the new year I wanted to share some tips on how your seizure triggers can help guide your New Year’s Resolutions. ## Resolutions: Looking Forward and Back This is the time of the year when we all want to set intentions for the year ahead and we hope to positively evaluate things in our lives that have gone past. A friend let me know that one of the things she does each year is to look her seizure triggers and try and create a plan of action in order to avoid those triggers. I thought this might be a helpful exercise to add in to you resolutions or vision board or manifestations or whatever it is that you do at this time of year. ## Take our survey 6 Resolution Survey **Would you ever consider your seizure triggers when creating your New Years Resolutions?** Definitely4 Probably0 Maybe1 Probably Not0 Definitely Not1 ## What are seizure triggers? According to the [National Epilepsy Foundation](https://www.epilepsy.com/what-is-epilepsy/seizure-triggers), some of the most commonly reported seizure triggers include lack of sleep, sickness with or without a fever, flashing lights, stress, drug or alcohol use, menstrual cycle, unmaintained blood sugars, and missing medications. My friend’s seizure triggers include stress, lack of sleep, and diet. ## Stress When it comes to stress, my friend has begun a [yoga](https://www.yogajournal.com/) practice. This can be done at home or in a yoga studio, whichever works for you. I also have done yoga over the years. This is a great way to work [meditation](https://livingwellwithepilepsy.com/epilepsy-wellness/mindfulness-meets-epilepsy-management.html "Mindfulness meets epilepsy management") into your day. It can give you a few minutes to stop, calm your breathing and focus on your body. I really encourage everyone to carve out a little time for some type of meditation or yoga. Resolutions are great when you can measure them. Then they become goals instead of big ideas. You could set an intention to add yoga to your day 1 time a week for 10 minutes at home. I think you’ve earned 10 minutes of peace and quiet. ## Lack of Sleep Another trigger for my friend is sleep deprivation, and I would say this is true for lots of us. When she finds herself getting off her sleep schedule she will block off a day (or evening) to allow for some relaxation, watch television, have a hot bath, and head to bed at a decent time. Having a [sleep or wind down routine](https://www.sleepfoundation.org/sleep-hygiene/bedtime-routine-for-adults) can be helpful in making sure you get enough good quality sleep. One idea here is to each month of the year add something new to your sleep schedule. Come next year you will have loads of gift ideas for your loved ones to make bedtime super cozy! ## Not Eating Healthy Finally, my friend reports diet can be a trigger. Honestly it can be tough to eat right for many reasons these days, one of which is money. But it is true that whole ingredients are better for us and diet plays a role in our health. Those of us living with epilepsy might find learning more about the Mediterranean diet or the Mind Diet would be useful. As far as eating better resolutions go, small wins count. If you decide to make slight adjustments toward a healthier diet that counts as success. ## What are your resolutions? I hope that this helps you to setup your yearly goals and resolutions as much it has helped me. Can’t wait to hear more about your resolutions!! ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Seizure Triggers --- ### [It's Seizure Action Plan Awareness Week](https://livingwellwithepilepsy.com/aboutepilepsy/seizure-action-plans/mark-your-calendar-for-seizure-action-plan-awareness-week.html) **Published:** February 16, 2023 **Author:** Jessica K. Smith **Excerpt:** Seizure Action Plan Awareness Week is February 13 to 20, 2023. This awareness campaign was developed and is managed by the Seizure Action Plan Coalition. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/01/SAPAW-Facebook-2023-1200x527-1-1024x450.jpeg "SAPAW-Facebook-2023-1200x527 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2023/01/SAPAW-Facebook-2023-1200x527-1.jpeg)Seizure Action Plan Awareness Week is February 13 to 20, 2023. This awareness campaign was developed and is managed by the [Seizure Action Plan Coalition.](https://seizureactionplans.org/sap-coalition/) ## What is a Seizure Action Plan A Seizure Action Plan (SAP) contains tailored guidelines on how to respond during a seizure, based on the patient’s medical history. It includes health and medical information specific to the patient and helps others recognize seizures and the appropriate steps to take to keep him or her safe from injury or damage caused by prolonged seizures. [LEARN MORE ](https://seizureactionplans.org/seizure-action-plans/) ## Spread Awareness of Seizure Action Plans As many of us know it is important to educate peers, co-workers, healthcare providers, and the general public about the importance of Seizure Action Plans (SAPs). To put a focus on SAPs, the SAP Coalition hosts an annual Seizure Action Plan Awareness Week each February, in concert with International Epilepsy Awareness Day. ## Share Your Seizure Action Plan Story Take a moment to spread a little awareness this year. Share your Seizure Action Plan Story! Be sure to include “Seizure Action Plan” in the title so we know!![SHARE YOUR SEIZURE ACTION PLAN STORY ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Seizure Action Plans **Tags:** #sapaw2023, #seizureactionplan, #seizuresafeschools --- ### [Do Adults Need Seizure Action Plans Too?](https://livingwellwithepilepsy.com/aboutepilepsy/seizure-action-plans/do-adults-need-seizure-action-plans-too.html) **Published:** August 1, 2024 **Author:** Jessica K. Smith **Excerpt:** Whether you have been living with epilepsy for years or are newly diagnosed, you may think seizure action plans (SAPs) are just for kids and are not for adults. **Content:** [![seizure action plans](https://livingwellwithepilepsy.com/wp-content/uploads/2023/06/9-1024x1024.png "9 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2023/06/9.png)Whether you have been living with epilepsy for a while or are newly diagnosed, you may think seizure action plans (SAPs) are for kids and are not applicable to adults. While it is true that the use of seizure action plans are common for kids because they are often required by schools, they are a great tool for adults too. ## Seizure Action Plans for Adults Did you know that there are seizure action plans that are specifically designed for adults and their caregivers? These documents provide guidance on your individualized treatment plan, including how you want others to respond to potential seizure emergencies and your guidance on appropriate use of rescue therapy. Here’s an example of a seizure action plan designed specifically for adults: [ADULT SEIZURE ACTION PLAN ](https://epilepsyfoundationmn.org/wp-content/uploads/2019/04/Adult-Seizure-Action-Plan.pdf) ## Do Adults Really Need Seizure Action Plans? You are not required to have one. And maybe that’s the problem. Because we’re not required to have a seizure action plan there’s very little drive to put one together. But if you want to have a say in how you are cared for during a seizure I would recommend putting one in place. In my twenties, I was working on the 18th floor of an office building on the Upper West Side of Manhattan. A few of my co-workers knew I had epilepsy but no one had first aid training. No one knew about my seizure type. They certainly didn’t know which meds I was on. That day I had a tonic clonic (grand mal) seizure in the big conference room. I managed to smash my head against the leg of the conference table and scare the crap out of my coworkers. I woke up to find myself on the floor in my best suit, with coworkers and paramedics standing around me as they prepared to load me onto a gurney. I did not have a seizure action plan in place. Luckily a colleague who also had a hidden and chronic health condition offered to ride with me to the hospital. Even more luckily my phone was charged enough that someone was able to call my husband and let him know what was happening so he could meet me at the hospital. I will be forever grateful. ## I Was Lucky If that seizure had happened while I was on the train heading home or out getting lunch the scenario could have been very different. I was extremely lucky that the worst that happened was embarrassment and I ruined a good suit. But had I been wearing a medical ID and if I had a seizure action plan in writing and on my person, there would not have been any question about my doctors names, who to call, what was happening and how to proceed. [ADULT SEIZURE ACTION PLAN ](https://epilepsyfoundationmn.org/wp-content/uploads/2019/04/Adult-Seizure-Action-Plan.pdf) I encourage you to develop a seizure action plan no matter how old you are. Speak to your doctor to see if they have a form they recommend. If not feel free to download the form I have provided here. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Seizure Action Plans **Tags:** seizure action plan --- ### [What is a seizure action plan?](https://livingwellwithepilepsy.com/aboutepilepsy/seizure-action-plans/what-is-a-seizure-action-plan.html) **Published:** October 10, 2024 **Author:** Jessica K. Smith **Excerpt:** A Seizure Action Plan is a personalized plan for people living with epilepsy. It tells others how to respond on your behalf during a seizure. **Content:** ## [![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/06/3-1024x1024.png "What is a Seizure Action Plan? – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2023/06/3.png)What is a seizure action plan and why is it important? A Seizure Action Plan is a personalized plan for people living with epilepsy. It tells others how to respond on your behalf during a seizure. This plan or document includes essential information that can help people react quickly and reduce the harm a seizure can do. ## Seizure Action Plan for Adults According to an article published in *[Epilepsy Behavior](https://livingwellwithepilepsy.com/wp-content/uploads/2023/04/Epilepsia-2023-Kop-The-need-for-an-individualized-approach-to-what-is-considered-a-clinically-significant-reduction.pdf),* the use of pediatric a seizure action plan is common, in fact they are often required by schools, however, most adults with epilepsy do not have a documented plan. In some cases the seizure action plan that may have been in place in elementary or high school does not transition to college. In other cases when the person is diagnosed as an adult there are few scenarios where one would be required to create a formal plan. > However, having a documented plan is a good idea. ## Why is it important? A Seizure Action Plan is important because seizures can be life-threatening. In fact, when seizures last more than 5 minutes they are referred to as status epilepticus. Some complications associated with status epilepticus include: brain damage, cardiac damage, respiratory failure, hypoxia, and aspiration pneumonia. If you are likely to have prolonged seizures or seizure clusters, it is important to have a Seizure Action Plan that lets others know what to do in an emergency situation. For example, a Seizure Action Plan can reduce the time to action during a seizure and faster response times can reduce risk of any prolonged seizures, the need for emergency [rescue medications](https://livingwellwithepilepsy.com/2023/aboutepilepsy/rescue-medication/what-is-a-rescue-medication.html "What is a rescue medication for epilepsy?"), and the risk for [seizure-associated mortality](https://livingwellwithepilepsy.com/2022/personal-epilepsy-stories/my-beef-with-sudep-research.html "Epilepsy Blog Relay: My beef with SUDEP Research"). **Create your own:** [**SEIZURE ACTION PLAN TEMPLATE**](https://livingwellwithepilepsy.com/resources) ## Why its harder for adults It’s true that the US health system has not developed a questionnaire in Electronic Health Records systems such as EPIC. Nor has our health system integrated social work teams, nurse navigators, or health coaches into neurology practices. All of whom, it’s worth noting, could support the development of seizure action plans in adult patients with epilepsy. Additionally, the stigma for those in their late teens to early twenties and early thirties is extremely high. These are years when people, men and women alike are trying to prove themselves at work, find a partner, decide where to live, find a passion, etc. All of this is hard enough without layering on epilepsy. Then to add on the element of needing the self discipline to develop a document and share it with people is a lot to ask. > However, I will say again it can save your life. ## It offers you control Here’s the deal. The use of a Seizure Action Plan can offer you a way to control a situation when you are physically not in control. Personally this appeals to me. It allows you to clearly guide others on how you want to be cared for such as understanding what to do during a seizure, when watchful waiting is appropriate, when to intervene with at-home rescue medications, when to call 911 or go to the hospital, and much more. It’s nice to have a little control back. Wouldn’t you agree? --- *This article was made possible through an educational grant from [Neurelis Inc](https://neurelis.com/).* ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Seizure Action Plans **Tags:** #seizureactionplan, epilepsy, rescuemedication --- ### [Leila's Ideas: Volunteer Match](https://livingwellwithepilepsy.com/advocacy-awareness/leilas-ideas-volunteer-match.html) **Published:** October 25, 2016 **Author:** Leila Shields **Content:** ![Volunteering as a camp counselor--I do it every summer!](http://livingwellwithepilepsy.com/wp-content/uploads/2016/10/11692753_10152906629900614_1074887587526238981_n-225x300.jpg "11692753_10152906629900614_1074887587526238981_n – Living Well With Epilepsy")Volunteering as a camp counselorI do it every summerThere are so many people who have helped me in my epilepsy [journey](http://livingwellwithepilepsy.com/category/leilas-ideas). Whether they’re friends, family, or organizations, I am beyond thankful for those who have spent time with me on this crazy ride. I want to volunteer with others just like I was helped, but there are so many ways to do so! [Emily](http://livingwellwithepilepsy.com/category/emilys-perspective) wrote about a few of them in her post [earlier this month](http://livingwellwithepilepsy.com/2016/emilys-perspective/emilys-perspective-giving-back.html). #### Volunteer Match While I was trying to determine what path of volunteering would be right for me, I stumbled upon a helpful website. It’s called [Volunteer Match](http://www.volunteermatch.org/) and it is a giant hub of information about over 100,000 organizations for anyone looking to volunteer. When you arrive at the home page, you are given the ability to search for volunteer opportunities in your geographical area. You can also narrow the search based on your specific interests using 29 cause categories. I could also search using the age group I want to work with. I made my own profile so I can save my interests for future searches. WIth my profile, I was also able to add a resume, save my location, and add special skills I have. I can choose between local opportunities to do in person or I can select a virtual opportunity to find ways to help someone across the country. In my area, there were 67 volunteer opportunities! The website offers resources for organization leaders and volunteers. The resources include [webinars](http://learn.volunteermatch.org/webinars/creating-culture-volunteer-engagement), [books](http://learn.volunteermatch.org/books-and-resources), [videos](http://learn.volunteermatch.org/resources/nonprofit-tools-training-videos), and a [blog](http://blogs.volunteermatch.org/engagingvolunteers/) that can help volunteers make the most of their time and promote a positive culture within the organization. #### Choose Something Meaningful to You Using this website helped me find organizations in my area that I didn’t even know could use my help. Even if they’re not related to epilepsy, I can still use my experience to help others make the most of their lives. With so many options, it can be hard to choose exactly which nonprofit to work with! Regardless of which one is chosen, it will be a worthy cause. If you’re motivated to give back to your community, check out Volunteer Match; it can connect you to a cause that can change your community for the better. #### How have you helped out in your community? Let us know in the comments below! ![author avatar](https://secure.gravatar.com/avatar/4cebf381fbce646cb0dbabef2348282b941c67524a3f03f08d6e328fa6c976cb?s=300&d=mm&r=g) Leila Shields Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania. [See Full Bio](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/leila.zorzie) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://lzorzie) **Categories:** Advocacy and Awareness **Tags:** Epilepsy Awareness, Leila's Ideas, Living Well With Epilepsy, Volunteer --- ### [Lemonade for Livy: Crowdsourced FUN-draising](https://livingwellwithepilepsy.com/advocacy-awareness/events-initaitives/lemonade-for-livy-2.html) **Published:** July 13, 2014 **Author:** Jessica K. Smith **Content:** ![GirlsLemon_For_Facebook_Jessica](http://livingwellwithepilepsy.com/wp-content/uploads/2014/07/GirlsLemon_For_Facebook_Jessica-e1405188099431-285x300.png "GirlsLemon_For_Facebook_Jessica – Living Well With Epilepsy")Jon Scheinman and his family are more loving and more energetic than any family I’ve met in a long time. They have kicked off a national effort called “Lemonade for Livy,” to raise funds which will go to the Epilepsy Foundation to support epilepsy research. ### How it all started Lemonade for Livy started several years ago when friends of the Scheinman family had a lemonade stand to raise money to help with Livy’s medical costs. Livy was born with a brain malformation and began having seizures the day she was born. She later had a functional (partial) hemispherectomy, however she still experiences seizures on a daily basis. Livy also has Cerebral Palsy and is primarily non-verbal but clearly communicates to family and loved ones. The family friends **raised $90** with one lemonade stand. That simple act of kindness got Livy’s twin sister, Hailey, thinking about how they could raise money and awareness with lemonade stands of their own. So last year, Hailey, who was 8 at the time, organized 10 lemonade stands (with a little help from mom and dad). According to Jon, “Hailey is Livy’s biggest supporter.” ### Lemonade for Livy Weekend This year the family has spread the word about Lemonade for Livy and is hoping to have a lemonade stand in all 50 states. They have dedicated the weekend of July 25-27 as the official Lemonade for Livy weekend. As mentioned above all money will be donated directly to the Epilepsy Foundation. In fact, the family is asking that checks be made out to the Epilepsy Foundation directly. ### Hear from why Hailey thinks this is important ### How to Participate There are lots of ways to participate whether you are a kid or a grown-up. Here are a few ideas: - Have a lemonade in your neighborhood - Have a lemonade party - Try a Lemonade book club - Set up a lemonade stand at a sporting event or a yard sale - Have a pool party - Sell Baked goods - Grown-ups might enjoy a Lemondrop party![Lem_For_Livy_Map_6-29-2014](http://livingwellwithepilepsy.com/wp-content/uploads/2014/07/Lem_For_Livy_Map_6-29-2014-300x249.png "Lem_For_Livy_Map_6-29-2014 – Living Well With Epilepsy") ### Be sure to get recognition Don’t forget to let Livy and Hailey know that you are having a stand or party. They will turn your state purple on the map and watch for pictures of your event. You can register your event here: [REGISTER ](http://www.livyshope.com/index.php/lemonade-reg/livyshopeforacure) ### How to submit donations **1. Online** [DONATE ONLINE ](https://epilepsytherapyproject.myetap.org/fundraiser/livyshope/) **2. By Mail** Please make checks payable to the **Epilepsy Foundation** **Mail checks to:** Livy’s Hope PO Box 15326 Clearwater FL 33766 Attn: Lemonade for Livy **Mail money by:** Send checks by August 10 ### You can make a difference Before Jon Scheinman and I ended our conversation he noted, “It is really important to bring people together. Something like this can bring some hope and bring people together in a way that is fun but has a real purpose.” I hope you consider having a lemonade stand July 25-27 to support Hailey and Livy and epilepsy research. Oh, and spread the word. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Events and Initiatives **Tags:** Events, Lemonade for Livy --- ### [My Epilepsy Doesn't Just Affect Me](https://livingwellwithepilepsy.com/aboutus-lwwe/epilepsy-doesnt-just-affect-me.html) **Published:** June 14, 2017 **Author:** Jessica K. Smith **Excerpt:** Jessica's Story: I didn't really start Living Well With Epilepsy to tell my own story. But fair is fair, I suppose it is time to share my story. **Content:** ## ***[![Mom](http://livingwellwithepilepsy.com/wp-content/uploads/2017/06/IMG_5091-e1497129223936-225x300.jpg "IMG_5091 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/img_5091)***Jessica’s Story Someone recently asked me to share my epilepsy story. This friend was surprised she wasn’t able to find the details of how I was diagnosed with epilepsy or how I started Living Well With Epilepsy online. The thing is I didn’t really start Living Well With Epilepsy to tell my own story. I always felt Living Well With Epilepsy was meant to offer a solution to the millions of families searching for information. But fair is fair, I suppose it is time to share my story. ## My diagnosis During the summer between seventh and eighth grade, I was about 12 years old. That summer I was invited to join my best friend Amy on a family vacation. In preparation for the trip, on an especially hot day, made a mess of my room packing (likely at the last minute) to go away with my friend. Halfway through packing too much stuff, I decided to take a shower. Like you do. I remember the hallway, the green rug and my short summer bathrobe. But that’s it. When I woke up, my parents and paramedics were all around me. I was splayed out all over the upstairs hallway but I had no idea where I was. There was no way for me to know how big a left turn my life had just taken. I had just experienced was my first grand mal or tonic clonic seizure. I then went on to have another seizure that day. That sealed the deal. I was diagnosed with epilepsy. I went on to have more that summer, and several more in the years that followed. I was put on a variety of medications through junior high school and high school, and the doctors did eventually find a combination that worked to control my seizures. Epilepsy has had a profound impact on my life. The thing is, my epilepsy doesn’t affect only me. ## My Sisters Back then, it had an impact on my sisters who were sent off to a neighbor’s house every time I had a seizure. They were too little to be left alone when mom and dad took me to the hospital. These days I would be lost without my sisters. They mean everything to me. ***Back Then*** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2015/06/photo10-scaled-300x224.jpg "photo(10) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2015/06/photo10-scaled.jpg) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2015/06/photo7-300x224.jpg "photo(7) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2015/06/photo7-scaled.jpg) ***And Now***[![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/06/IMG_5027-e1497130095180-1024x919.jpg "IMG_5027 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/img_5027) ## My Dad It had an impact on my dad. He wouldn’t admit it but he worries a little – even now that I’m grown up. I can’t imagine how he must have worried as he packed the car full of too much stuff (a common theme) and dropped me off at college. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2015/06/photo8-300x224.jpg "photo(8) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2015/06/photo8-scaled.jpg) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2015/06/photo13-scaled-300x224.jpg "photo(13) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2015/06/photo13-scaled.jpg) ## My Mom And it had an impact on my mom. She worried too. Probably more than I even know. As you can tell the girls rule in our family. I have to say mom has led the way in strength. I continue to learn from and lean on my mom. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/06/IMG_5210-e1497130508163-300x297.png "IMG_5210 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2017/06/IMG_5210-e1497130508163.png) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/06/IMG_2751-e1497130655856-270x300.jpg "IMG_2751 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2017/06/IMG_2751-e1497130655856-scaled.jpg) ## **Husband and Daughter** Now that I am married with a family of my own, I lean heavily on my husband and daughter, and I have to say they carry the burden with grace. I am lucky to have so many people in my life whom I can count on. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/03/IMG_3601-e1490755196219-300x200.jpg "IMG_3601 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2017/03/IMG_3601-e1490755196219-scaled.jpg) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/03/IMG_3529-1-300x200.jpg "IMG_3529 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2017/03/IMG_3529-1-scaled.jpg) ## Final Comments As you can probably tell, my epilepsy story is a long and winding road that started one hot afternoon in my childhood home and continues today. There are good days and bad days. But the most important thing is I couldn’t do any of it without the love and support of my family. --- ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** About Us **Tags:** Epilepsy Blog Relay --- ### [Announcing Our Epilepsy Blog Relay Lead Bloggers](https://livingwellwithepilepsy.com/advocacy-awareness/events-initaitives/nov15-announcing-our-lead-bloggers.html) **Published:** October 20, 2015 **Author:** Jessica K. Smith **Content:** The next Epilepsy Blog Relay™ will kick off on November 1 and run through November 30 in recognition of Epilepsy Awareness Month. Each week will have a special focus and I am pleased to announce the lead bloggers for the November 2015 Epilepsy Blog Relay™: ## [![Maureen Knorr, "Traveling with Epilepsy"](http://livingwellwithepilepsy.com/wp-content/uploads/2015/07/MaureenKnorr_img_2598-e1445305259317-300x164.jpg "MaureenKnorr_img_2598 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2015/traveling-with-epilepsy/traveling-with-epilepsy-takeoff.html/attachment/maureenknorr_img_2598) ## Week 1: **Epilepsy in Everyday Life** **Lead Blogger:** Maureen Knorr, columnist on Living Well With Epilepsy. Maureen’s column, [*Traveling with Epilepsy*](http://livingwellwithepilepsy.com/category/traveling-with-epilepsy) is a sometimes fun, sometimes scary, authentic look at what worldwide travel is really like when you live with epilepsy. Maureen Knorr has opened her suitcase to share her experiences with us. From having seizures in foreign countries to begging pharmacists that don’t speak English for medication, you will join her on her wonderfully interesting journey around the globe. Maureen will send us one of her postcards from her travels. ## [![Picture_1](http://livingwellwithepilepsy.com/wp-content/uploads/2015/10/Picture_1-e1445300327233-300x221.png "Picture_1 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2015/blog-relay/nov15-announcing-our-lead-bloggers.html/attachment/picture_1)Week 2: **Epilepsy Genetics: Awareness Matters** **Lead Blogger:** Ingo Helbig, MD, Child Neurology resident, epilepsy genetics researcher member of the European EuroEPINOMICS consortium and co-founder of [Beyond the Ion Channel blog](http://epilepsygenetics.net/). Dr. Helbig went to medical school in Heidelberg and Mannheim, Germany, and Lexington, Kentucky, USA. He trained at the [Epilepsy Research Centre](http://www.epilepsyresearch.org.au/), Australia, and was Assistant Professor at the [Department of Neuropediatics](http://www.uksh.de/neuropaediatrie-kiel/index.html), Kiel, Germany, and co-project leader of [EuroEPINOMICS-RES](http://www.esf.org/activities/eurocores/running-programmes/euroepinomics/projects/res.html). In 2014, he became a member of the ILAE Genetics Commission and transferred to the Division of Neurology at the Children’s Hospital of Philadelphia. Dr. Helbig will kick off Week 2 of the EPILEPSY BLOG RELAY and will cover epilepsy genetics in an accessible manner. ## [![App image](http://livingwellwithepilepsy.com/wp-content/uploads/2015/03/App-image-300x180.png "App image – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/events/epilepsy-storylines-app-launch/attachment/app-image)Week 3: Tech and Innovation in Epilepsy **Lead Blogger:** Leslie Jamison, Executive Vice President and Managing Director, Self Care Catalysts, creators of Epilepsy Health Storylines. [Epilepsy Health Storylines](http://livingwellwithepilepsy.com/epilepsy-storylines) is an app designed for people living with epilepsy with feedback from people living with epilepsy. The app makes it easier than ever to record your symptoms, seizure activity, moods, medication, and more to help you manage your epilepsy. Choose what you want to track and view it all on “My Storylines”. Leslie will share the latest features in the Epilepsy Health Storylines mobile app including connections with wearables. ## [![12088417_743736459065096_2679844801254425244_n](http://livingwellwithepilepsy.com/wp-content/uploads/2015/10/12088417_743736459065096_2679844801254425244_n-300x130.jpg "12088417_743736459065096_2679844801254425244_n – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2015/blog-relay/nov15-announcing-our-lead-bloggers.html/attachment/12088417_743736459065096_2679844801254425244_n)Week 4: Creativity and Epilepsy **Lead Blogger:** Neil Creque Williams, David’s Reverie Director. [“David’s Reverie”](http://www.davidsreverie.com/) is a drama about a jazz musician struggling to prevent his epilepsy diagnosis from derailing his emerging career. The film has debuted at festivals around the country. Neil, who lives with epilepsy himself, will blog about the film and the process of bringing this topic to the big screen. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Events and Initiatives **Tags:** Creativity and Epilepsy, Epilepsy Blog Relay, Epilepsy Genetics, Epilepsy in Everyday Life, Epilepsy Tech --- ### [Epilepsy Blog Relay™: Connect on the March LivingWellChat](https://livingwellwithepilepsy.com/advocacy-awareness/events-initaitives/connect-on-the-march-livingwellchat.html) **Published:** March 31, 2016 **Author:** Jessica K. Smith **Excerpt:** Join us for a fun LIVE event as a way to celebrate the end of another great Epilepsy Blog Relay. Connect with your favorite epilepsy bloggers on tonight’s #LivingWellChat on Thursday, March 31 at 7PM ET on Twitter. **Content:** [![LWC](http://livingwellwithepilepsy.com/wp-content/uploads/2015/11/LWC-300x251.png "LWC – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2015/blog-relay/epilepsy-blog-relay-meet-the-bloggers-at-the-next-livingwellchat.html/attachment/lwc) Join us for a fun LIVE event as a way to celebrate the end of another great [Epilepsy Blog Relay](http://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-mar-2016-participants). Connect with your favorite epilepsy bloggers on tonight’s #LivingWellChat on Thursday, March 31 at 7PM ET on Twitter. We’ll be using the hashtag #LivingWellChat to filter out all the other social noise on the platform. You can expect the chat to last 1 hour. Don’t miss this chance to connect with the bloggers from this month’s Epilepsy Blog Relay. #### Participating in #LivingWellChat 1\. Go to OR 2\. Log in using your twitter account \*\*IMPORTANT\*\* 3\. Set the chat speed as fast or slow as you prefer 4\. The Twitter feed will pop up with all the #LivingWellChat tweets. You officially become part of the chat — all you have to do is write your thoughts in the box at the top of the feed. Don’t worry about adding #LivingWellChat at the end, both Tweetchat and Twubs add the hashtag in for you automatically. 5\. Be sure to introduce yourself when you come on the chat #### How does the chat work? The format of #livingwellchat is very simple: We start with a general topic, and the conversation flows from there. Lots of Twitter chats have a formal structure, only allowing a few minutes per question, but #livingwellchat is a bit more open. We encourage spontaneous discussion with tons of Q&A. #### Can anyone join in the conversation? Yep, please join in the chat. If you have been living with epilepsy for decades, if you are newly diagnosed, or if you are caring for a loved one who is living with epilepsy you will find something of interest on the next #LivingWellChat. #### What if I don’t have a Twitter account? If you don’t have your own Twitter account, you can always follow #livingwellchat in the footer of . However, if you participate in this way, you can’t contribute to the conversation. #### I hope to see you there! ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Events and Initiatives **Tags:** #LivingWellChat, Epilepsy Blog Relay, Mar 16 EBR Posts --- ### [Epilepsy Blog Relay™: It's time for LivingWellChat](https://livingwellwithepilepsy.com/advocacy-awareness/events-initaitives/june-2016-livingwellchat.html) **Published:** June 30, 2016 **Author:** Jessica K. Smith **Excerpt:** Connect with your favorite Epilepsy Blog Relay™ bloggers during tonight’s LIVE #LivingWellChat on Thursday, June 30 at 7PM ET on Twitter. **Content:** [![LWC](http://livingwellwithepilepsy.com/wp-content/uploads/2015/11/LWC-300x251.png "LWC – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2015/blog-relay/epilepsy-blog-relay-meet-the-bloggers-at-the-next-livingwellchat.html/attachment/lwc)*This post is part of the [Epilepsy Blog Relay™](http://livingwellwithepilepsy.com/epilepsy-blog-relay) which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!* Join us for a fun LIVE event as a way to celebrate the end of another great *[Epilepsy Blog Relay™](http://livingwellwithepilepsy.com/epilepsy-blog-relay)*. Connect with your favorite epilepsy bloggers on tonight’s #LivingWellChat on Thursday, June 30 at 7PM ET on Twitter. We’ll be using the hashtag #LivingWellChat to filter out all the other social noise on the platform. The chat will last about 1 hour. #### How does the chat work? The format of #livingwellchat is very simple: We start with a general topic, and the conversation flows from there. Lots of Twitter chats have a formal structure, only allowing a few minutes per question, but #livingwellchat is a bit more open. We encourage spontaneous discussion with tons of Q&A. #### Participating in LivingWellChat 1\. Go to OR 2\. Log in using your twitter account \*\*IMPORTANT\*\* 3\. Set the chat speed as fast or slow as you prefer 4\. The Twitter feed will pop up with all the #LivingWellChat tweets. You officially become part of the chat — all you have to do is write your thoughts in the box at the top of the feed. Don’t worry about adding #LivingWellChat at the end, both Tweetchat and Twubs add the hashtag in for you automatically. 5\. Be sure to introduce yourself when you come on the chat #### If you don’t have a twitter account There are several options to follow along with the #LivingWellChat if you don’t have a Twitter account. Just remember you won’t be able to chime in with your own comments. Option 1. Go to the Living Well With Epilepsy Facebook page and click on the Twitter tab at Option 2. Go to and watch the chat in the footer of the home page. #### Can anyone join in the conversation? Yep, please join in the chat. If you have been living with epilepsy for decades, if you are newly diagnosed, or if you are caring for a loved one who is living with epilepsy you will find something of interest on the next #LivingWellChat. #### I hope to see you there! ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Events and Initiatives **Tags:** #LivingWellChat, Epilepsy Blog Relay, Jun 16 EBR Posts, twitter chat --- ### [An Update on Epilepsy Awareness Initiatives](https://livingwellwithepilepsy.com/advocacy-awareness/events-initaitives/nov16epilepsyawareness.html) **Published:** November 7, 2016 **Author:** Jessica K. Smith **Excerpt:** These days the Living Well With Epilepsy team is busy working on new epilepsy awareness initiatives. **Content:** ## ***[![](http://livingwellwithepilepsy.com/wp-content/uploads/2016/04/LWWE-Tshirts-e1460311838590-300x300.jpg "LWWE Tshirts – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2016/leilas-ideas/leilas-ideas-navigating-medial-insurance.html/attachment/lwwe-tshirts)***An update from Jessica These days the Living Well With Epilepsy team is busy working on new epilepsy awareness initiatives. In October, the [IAMSUDEPAWARE](http://livingwellwithepilepsy.com/iamsudepaware) campaign skyrocketed beyond our expectations. Recently [Emily Donoghue](http://livingwellwithepilepsy.com/staff/emily-donoghue), a Living Well writer, presented at an Eisai UK event. [Abby Gustus-Alford](http://livingwellwithepilepsy.com/staff/abby-gustus-alford-writer), a Living Well writer, released her new book, [*Seize the Day*](https://www.amazon.com/Seize-Day-Inspirational-Learning-Epilepsy-ebook/dp/B01LWK5ED3). This month we are busy with the [Epilepsy Blog Relay](http://livingwellwithepilepsy.com/epilepsy-blog-relay) which will end with the #LivingWellChat. And in December, I will head to the [American Epilepsy Society](https://www.aesnet.org/) meeting in Houston, TX. ## Learn more about SUDEP Last month Living Well With Epilepsy worked with [SUDEP Aware](http://www.sudepaware.org) and [Lundbeck](http://lundbeck.com) on an exciting new campaign to increase awareness of Sudden Unexpected Death in Epilepsy (SUDEP). The [\#IAMSUDEPAWARE](http://livingwellwithepilepsy.com/iamsudepaware) social media campaign was extremely successful in raising awareness. The effort kicked off September 23 and ran through October 23. As a result, more than a half a million people learned about SUDEP. Just in case you missed it, here is a bit of info on SUDEP. Today, approximately 65 Million people around the world are living with epilepsy and each year, an estimated 1 in 1000 people with epilepsy die from Sudden Unexpected Death in Epilepsy (SUDEP). That’s approximately 65,000 people around the world who will die each year as a result of [SUDEP](http://www.sudepaware.org/about_sudep.html). Download brochures on [SUDEP in English Spanish and French from SUDEP Aware](http://www.sudepaware.org/msos_materials.html). ## Don’t miss the #LivingWellChat Join us for a fun LIVE event on November 30, at 7pm ET as a way to celebrate the end of another great *[Epilepsy Blog Relay™](http://livingwellwithepilepsy.com/epilepsy-blog-relay)*. We use the hashtag #LivingWellChat to filter out all the other social noise on the platform and the chat lasts about 1 hour. ## **How does the chat work?** Lots of Twitter chats have a formal structure, only allowing a few minutes per question, but #LivingWellChat is a bit more open. The format of #LivingWellChat is very simple: We start with a general topic, and the conversation flows from there. We encourage spontaneous discussion with tons of Q&A. ## Participating in #LivingWellChat 1\. Go to OR 2\. Log in using your twitter account \*\*IMPORTANT\*\* 3\. Set the chat speed as fast or slow as you prefer 4\. The Twitter feed will pop up with all the #LivingWellChat tweets. 5\. Be sure to introduce yourself when you come on the chat I really like Twubs, but some people prefer Tweetchat. Others prefer to participate within Twitter. It’s up to you! ## **If you don’t have a twitter account** You won’t be able to chime in with your own comments but here are two ways to follow along: Option 1: Go to the Living Well With Epilepsy Facebook page and click on the Twitter tab at Option 2: Go to and watch the chat in the footer of the home page. ## Can anyone join in the conversation? Yes, please join in the chat. Whether you have been living with epilepsy for decades, or if you are newly diagnosed, you and your loved ones will find something of interest on the next #LivingWellChat. --- ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Events and Initiatives **Tags:** #LivingWellChat, Epilepsy Blog Relay, twitter chat --- ### [Emily on Living with Absence Seizures](https://livingwellwithepilepsy.com/aboutepilepsy/seizure-types-syndromes/absence-seizures/emily-living-with-absence-seizures.html) **Published:** June 18, 2017 **Author:** Emily Lawrence (Nee Donoghue) **Excerpt:** Emily has a positive outlook regarding epilepsy and despite living with absence seizures she has become an outspoken advocate sharing hope with others. **Content:** ## [![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/05/purple-300x251.jpg "purple – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/emily-becomes-an-advocate.html/attachment/purple)Emily’s Story My name’s Emily Sian Donoghue, I’m a 22-year-old living in England, turning 23 in October this year. I work full time in the City hospital, helping to make patients lives better. Alongside juggling work, as much of a social life as I can get, I also work hard to keep up a growing community of people who wish to support people living with Epilepsy and associated conditions. I am an Epilepsy advocate working to share my own story, experience with different treatment options and I aim to offer invaluable support to other epilepsy fighters and their families around the world. So here, on Living Well with Epilepsy, is my story….so far. ## More than Daydreams In **2012** I made a personal commitment to share my story with the world in the hope that I could provide information, insight and support as well as inspiration to others that live with seizures. I believe that Epilepsy and other conditions do not define who an individual is. I have had Epilepsy since 2006, just before starting secondary school, but looking back I may have been having seizures for much longer. You see, not all seizures look the same, and it is important that people know this. I began having what was thought to be a *daydream*, at first nobody noticed because they seemed to be pretty brief, but these later developed into more complex epilepsy and I would experience different types of seizures. When they first began, I didn’t think much of it, nobody did really. Eventually I started to notice that I was missing little snippets of class discussion, it seemed more apparent during exercise where I found myself stopping in the middle of running or playing ball in school, whilst swimming or even during flute practice which as you can image, was very embarrassing when we were doing performances. Looking back now, we know that this was due to hyperventilation. I became known as ‘*The little daydreamer*‘, I quite liked that name. I was little and I was a daydreamer, I had been for a long time. I was always a bit of a joker, laughing, messing around and I enjoyed the outdoors, so my family thought I was just messing about which is understandable. ## Absence Seizures A few months on my teachers and parents began to worry as it was happening throughout each day more and more, and one day I stopped in the middle of the road as the lights changed red for the cars to go. Mum took me to see my GP around August time I think, I got referred for some tests and I got diagnosed with [**Absence Seizures**](http://livingwellwithepilepsy.com/2013/epilepsy-news/emilys-story-absence-seizures-part-1.html) in **September 2006.** My seizures were on and off for years, as I got older, stress from exams and school made them worse. I’ve never been one for getting stressed and I like to approach things with an open mind, but I was getting bullied and laughed at and being a daydreamer wasn’t fun anymore, it was a nightmare, this was when the stress began. Students who I didn’t even know looked at me in the corridors, pointed at me as I came round from a seizure and I was known as being strange. I found it hard to laugh about, so I became withdrawn. At the time I just didn’t know what to do to make myself happy, I became so miserable and I felt so alone despite having a wonderful family because I didn’t know anybody else experiencing similar to me. After a few months I discovered my passion for photography and I found hope in that. When I had my camera in hand I felt free. It didn’t matter if I went into a seizure when taking a photo because nobody noticed, it isn’t like the trees would laugh at me for daydreaming. I also began writing and became part of a publishing house, and in 2011 I won an Oscar for my photography and writing. By 2012 I started writing for Living Well with Epilepsy, and here we are. I love it and I have met so many people through my writing, and the founder, Jessica K Smith (Hi Jess!) is one of the most inspiring women I have ever met. She has helped me so much and I can’t imagine not knowing her. What I write is a snapshot of life living with Epilepsy, but I have also written reviews for Epilepsy and Seizure products for large organisations and businesses. In April 2012 I had my first Tonic-Clonic seizure, and I have had them ever since, as well as my absences. Although they have become more controlled now and they don’t affect me like they used to-I have got my life back. I couldn’t be happier. But in between 2012 and 2014 I was having seizures every day, up to 60 times a day and I have been in Status Epilepticus twice, and I have been admitted to hospital after serious seizures more times than I can count. I have been found at the bottom of staircases, behind my desk in my old job, and my family have lived in fear every time they heard a thud back when I was living at home. I currently take several medications which work wonders compared to the other meds and treatments I have tried, although I still have seizures. Since 2006 and now, writing, photography and the piano played a huge part in my happiness. I found that having a little escape to go to when things got tough really helped. I luckily have an amazing family, an amazing boyfriend (Hi Dan and family if you’re reading this!) but it’s always good to have something to go to as well and I highly recommend discovering something new, as it really is incredible what you can do when things are tough. ## Young Epilepsy I also do a lot of fundraising for Young Epilepsy. [Young Epilepsy](http://livingwellwithepilepsy.com/2016/epilepsy-news/emily-donoghue-shortlisted-young-epilepsy-award.html) is the national charity working exclusively on behalf of the 112,000 children and young people aged 25 and under with epilepsy and associated conditions. I began raising awareness for Young Epilepsy in February 2015. In March 2015 I got invited to attend the Champion Awards to represent Living Well With Epilepsy and have since began personally raising money for Young Epilepsy. I write media coverage when requested about any upcoming events and I have guest written for their website. In December 2015, I started writing a childrens book, which has since got a lot of interest from the media, but I am still awaiting a publisher, but I self published and it is now in The Royal Derby Hospital, Children’s Epilepsy department to support young children. The book tells the story of a little boy who is going through Epilepsy diagnosis. ## Shining Star Award On the 18th May 2016 I won the ‘Inspirational Shining Star award’. The Young Epilepsy Champions Awards celebrate the achievements of those living with epilepsy, their families, carers, teachers and support networks. The awards recognise those who are tirelessly fighting discrimination, tackling inclusivity and are facing the daily challenges that living with the condition can bring. Young Epilepsy said: “Emily always has a positive outlook with regards to her condition and those around her admire her openness and strength. She is a dedicated advocate for epilepsy awareness and has devoted her time to learning more about her condition and to help others in a similar situation.” On the 4th July I started a new job in a clinical role that I love, I have met some wonderful people and amazing patients there which help me through more than what they realise I think. On the 10th July 2016 I did a [wing walk](http://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/mar-17-ebr-posts/epilepsy-blog-relay-the-everyday-life-of-emily.html) for Young Epilepsy, which involved me being strapped to the wings of a Bi-plane going 500ft in the air!! I raised an incredible amount for Young Epilepsy with this activity. On the 1st November 2016 I went to Eisai’s HHC event in Hatfield to share my Epilepsy story and to get my passion for making a difference out there. I also took my book along so it could get noticed by more Medical Professionals. ## Sharing Hope I aim to give hope and share my faith and passion to finding a cure with people around me, and to help others who are experiencing Epilepsy too. During my tough times I realised that changes are inevitable and not always controllable. What can be controlled is how you manage, react to and work through the change process. I learned to embrace each challenge in my life as an opportunity for self-transformation. You can read more about The everyday life of Emily here on Living Well, if you’d like to read more about working with Epilepsy and living as much of a normal life as possible [ here](http://livingwellwithepilepsy.com/category/emilys-perspective). And remember, never give up! ![author avatar](https://secure.gravatar.com/avatar/5523d28ae8bbaedc9d082d51d29393ca490379cd31464b99ab3c7d50a49362ac?s=300&d=mm&r=g) Emily Lawrence (Nee Donoghue) 25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England. Emily's Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10. Based in UK. [See Full Bio](https://livingwellwithepilepsy.com/author/emilyd) [ ](https://livingwellwithepilepsy.com/author/emilyd) **Categories:** Absence Seizures **Tags:** Epilepsy Blog Relay --- ### [Epilepsy Blog Relay: Participate in Twitter Chat on Healthcare and Epilepsy](https://livingwellwithepilepsy.com/advocacy-awareness/events-initaitives/twitter-chat-on-healthcare-and-epilepsy.html) **Published:** June 25, 2017 **Author:** Jessica K. Smith **Excerpt:** We close every Epilepsy Blog Relay™, with a live twitter chat. Today we share instructions, & questions to guide our discussion on healthcare and epilepsy. **Content:** ***[![](http://livingwellwithepilepsy.com/wp-content/uploads/2016/10/LWC1-300x251.png "lwc1 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/portfolio/nov30-16-3/attachment/lwc1)This post is part of the Epilepsy Blog Relay™ which will run from June 1 to June 30, 2017. Follow along!*** #### Don’t miss another #LivingWellChat At the end of every *Epilepsy Blog Relay™,* we close with a live #LivingWellChat. Join us on June 30, at 7pm ET to celebrate and connect with some of our fantastic bloggers. The chat lasts about 1 hour. Just use the hashtag #LivingWellChat to filter out all the other social noise on twitter and join the conversation! **Click below to participate** #### How does the chat work? Lots of Twitter chats have a formal structure, only allowing a few minutes per question, but #LivingWellChat is more open. You will find #LivingWellChat is very simple: We start with a general topic, and the conversation flows from there. We encourage spontaneous discussion with tons of Q&A. #### This Month’s Topic*:* **Healthcare and Epilepsy** Throughout the chat we will touch on the following: Q1: What did it feel like when you (or your loved one) were first diagnosed? Q2: How do you pay for your medical needs (prescriptions, doctors appointments, tests, surgeries)? Q3: Are you (or your loved one) able to work? Q4: Do you rely on Medicare or Medicaid? Q5: What are your thoughts on classifying epilepsy as a preexisting condition? Q6: What do you want legislators to know about living with epilepsy? #### Participating in the June #LivingWellChat 1\. Go to OR 2\. Be sure to **log in** using your twitter account \*\*IMPORTANT\*\* 3\. Set the chat speed as fast or slow as you prefer 4\. The Twitter feed will pop up with all the #LivingWellChat tweets. 5\. Be sure to introduce yourself when you come on the chat 6\. Join the conversation I really like Twubs, but some people prefer Tweetchat. Others prefer to participate within Twitter. It’s up to you! #### **Follow along even if you don’t have a twitter account** You won’t be able to chime in with your own comments but here are two ways to follow along: Option 1: Go to the Living Well With Epilepsy Facebook page and click on the [Twitter tab](https://www.facebook.com/livingwellwithepilepsy/app/294627540601598/). Option 2: Go to and watch the chat in the footer of the home page. #### Can anyone join in the conversation? Join in the conversation! Whether you have been living with epilepsy for decades, or if you are newly diagnosed, you and your loved ones will find something of interest on the next #LivingWellChat. --- ***NEXT UP:* *Be sure to check out the next post by Alison at for more on epilepsy awareness. For the full schedule of bloggers, visit*** [***livingwellwithepilepsy.com***](http://livingwellwithepilepsy.com/epilepsy-blog-relay)***.*** ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Events and Initiatives **Tags:** Epilepsy Blog Relay --- ### [Epilepsy Blog Relay: It's Time for #LivingWellChat](https://livingwellwithepilepsy.com/advocacy-awareness/events-initaitives/epilepsy-blog-relay-its-time-for-livingwellchat.html) **Published:** June 30, 2017 **Author:** Jessica K. Smith **Excerpt:** This month I hope you will join us on tonight, June 30 at 7pm ET as we discuss healthcare with some of our fantastic bloggers. **Content:** [![](http://livingwellwithepilepsy.com/wp-content/uploads/2016/10/LWC1-300x251.png "lwc1 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/portfolio/nov30-16-3/attachment/lwc1)**This post is part of the Epilepsy Blog Relay™ which will run from June 1 to June 30, 2017. Follow along!** #### It’s time for another #LivingWellChat As you may know, we close every Epilepsy Blog Relay™ with a live #LivingWellChat. This month I hope you will join us on tonight, June 30 at 7pm ET as we discuss healthcare with some of our fantastic bloggers. The chat lasts about 1 hour. Just use the hashtag #LivingWellChat to filter out all the other social noise on twitter. Remember anyone can join the conversation! #### How does a twitter chat work? You’ll find #LivingWellChat is very simple: We start with a general topic, and the conversation flows from there. We encourage spontaneous discussion with tons of Q&A. #### This Month’s Topic: Healthcare and Epilepsy Throughout the chat we will touch on the following: Q1: What did it feel like when you (or your loved one) were first diagnosed? Q2: How do you pay for your medical needs (prescriptions, doctors appointments, tests, surgeries)? Q3: Are you (or your loved one) able to work? Q4: Do you rely on Medicare or Medicaid? Q5: What are your thoughts on classifying epilepsy as a preexisting condition? Q6: What do you want legislators to know about living with epilepsy? #### Participating in the June #LivingWellChat 1\. Go to http://twubs.com/livingwellchat OR http://tweetchat.com/room/livingwellchat 2\. Be sure to log in using your twitter account \*\*IMPORTANT\*\* 3\. Set the chat speed as fast or slow as you prefer 4\. The Twitter feed will pop up with all the #LivingWellChat tweets. 5\. Be sure to introduce yourself when you come on the chat 6\. Join the conversation I really like Twubs, but some people prefer Tweetchat. Others prefer to participate within Twitter. It’s up to you! #### Want to listen but don’t want to chat You can follow along even if you don’t have a twitter account. You won’t be able to chime in with your own comments but here are two ways to follow along: Option 1: Go to the Living Well With Epilepsy Facebook page and click on the Twitter tab. Option 2: Go to http://livingwellwithepilepsy.com and watch the chat in the footer of the home page. #### Can anyone join in the conversation? Join in the conversation! Whether you have been living with epilepsy for decades, or if you are newly diagnosed, you and your loved ones will find something of interest on the next #LivingWellChat. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Events and Initiatives **Tags:** #LivingWellChat, Epilepsy Blog Relay, Jun 17 EBR Posts, twitter chat --- ### [Epilepsy Awareness Day at Disneyland](https://livingwellwithepilepsy.com/advocacy-awareness/events-initaitives/2019epilepsy-awareness-day-at-disneyland.html) **Published:** November 2, 2019 **Author:** Jessica K. Smith **Excerpt:** The Living Well With Epilepsy team is excited to announce that our founder and several of our writers will be attending the 7th Annual Epilepsy Awareness Day at Disneyland (EADDL). **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/10/EADDL1-300x300.png "EADDL(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/home/attachment/eaddl1)This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** The Living Well With Epilepsy team is excited to announce that our founder and several of our writers will be at the [7th Annual Epilepsy Awareness Day at Disneyland (EADDL)](https://epilepsyawarenessday.org). The event, organized by [Candy and Brad Levy](https://epilepsyawarenessday.org/brad-candy-levy/), includes a packed Education Expo and is scheduled for November 4th, 5th and 6th – 2019. #### EADDL Event Details **November 4, 2019: 10:00 AM – 6:00 PM** **November 5, 2019: 8:00 AM – 4:00 PM** **WHERE**: Disneyland Hotel’s North and South Exhibit Hall **WHO**: People of all ages with epilepsy, their families and friends, and those whose lives are touched by epilepsy or who want to raise awareness for epilepsy. **WHAT**: The EXPO will feature over 60 Non-Profit support groups, several Epilepsy centers, Drug and related product manufacturers, seizure dogs and their trainers, and epilepsy professionals from around the world. **HOW MUCH**: The EXPO IS FREE. Please remember this is a one of a kind event. You don’t want to miss it! **PARKING**: Parking is available to all guests in the main parking structure for $18 for the day of the expo. EADDL is the combined effort of one family’s thankfulness for their own daughter’s recovery. Candy and Brad Levy, co-founders of Sofie’s Journey/EAD invite you to join the more than 5,000 participants at this great event. Attendees will take part in an exciting education expo and a day in Disneyland Park wearing EADDL Purple Event T-Shirts. (note: *park tickets sold separately*) “We wanted to create an opportunity to drive epilepsy awareness,” stated Candy Levy, Co-Founder of Sofie’s Journey/EAD. “At our event we bring together patients, physicians, advocates, non-profits, services, pharma and CBD, and this year we have a large section of the convention facility for people to meet their possible and future service dogs.” #### Living Well With Epilepsy attends EADDL This will be the first time the Living Well With Epilepsy team is attending EADDL. You can expect to meet Jessica Smith, Founder; Leila Shields, Writer; Whitney Petit, Writer; and Rachel Ehrhardt, Writer. There will be plenty of giveaways and a chance to connect with the women who you have been reading about for years! #### [Learn more about EADDL](https://epilepsyawarenessday.org/) --- **NEXT UP:** Be sure to check out the next post tomorrow at . ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Events and Initiatives --- ### [On Speaking Out Via Graphics for Epilepsy Awareness](https://livingwellwithepilepsy.com/advocacy-awareness/speaking-out-for-epilepsy-awareness.html) **Published:** November 9, 2019 **Author:** Christalle Bodiford **Excerpt:** Social Media has become the primary avenue for many people raising epilepsy awareness. But, if you're new to the world of digital art, Christalle has tips on easy ways to join in the fun. **Content:** ## [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/10/69702690_720535941751145_1591433246007099392_o-300x300.jpg "69702690_720535941751145_1591433246007099392_o – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-stories/tips-to-create-graphics-for-epilepsy-awareness.html/attachment/69702690_720535941751145_1591433246007099392_o)Christalle’s Story It’s not only inspiring to see people within the epilepsy community speaking out, but it’s exciting to see the number of people increasing as discussing topics like chronic illness becoming more mainstream. Social Media has become the primary avenue for many people raising epilepsy awareness. From educational graphics to lighthearted memes, it seems everyone is jumping on the epilepsy awareness bandwagon, not only to educate others but to also heal themselves and move closer to accepting their diagnosis. ## About Christalle Christalle Bodiford is an artist, advocate, writer, and adventure seeker. As an entrepreneur diagnosed with epilepsy, Christalle brings a unique perspective of empowerment that inspires others to embrace a positive mindset and live with purpose. When she’s not writing or advocating, Christalle enjoys puppy snuggles with her scruffy terrier and outdoor adventures with her husband. --- ![author avatar](https://secure.gravatar.com/avatar/c482cb9817c757de51d15b05e646343228dc696e4b401b723aec03077d040abd?s=300&d=mm&r=g) Christalle Bodiford Christalle Bodiford is an artist, advocate, writer, and adventure seeker. As an entrepreneur diagnosed with epilepsy, Christalle brings a unique perspective of empowerment that inspires others to embrace a positive mindset and live with purpose. When she’s not writing or advocating, Christalle enjoys puppy snuggles with her scruffy terrier and outdoor adventures with her husband. [See Full Bio](https://livingwellwithepilepsy.com/author/christallebodiford) [ ](https://livingwellwithepilepsy.com/author/christallebodiford) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/CreativeEpilepsyAdvocate/) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://twitter.com/ChristalleArt) **Categories:** Advocacy and Awareness --- ### [Virtual Epilepsy Education Conference to Celebrate Purple Day](https://livingwellwithepilepsy.com/advocacy-awareness/events-initaitives/virtual-epilepsy-education-conference-to-celebrate-purple-day.html) **Published:** March 20, 2021 **Author:** Jessica K. Smith **Excerpt:** The virtual epilepsy education conference to celebrate Purple Day will take place March 24-26. The free conference will include educational and advocacy sessions as well as a virtual expo. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/03/PurpleDay_socialmedia-0-04-1024x576.jpg "purpleday_edu_conference – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2021/03/PurpleDay_socialmedia-0-04.jpg) #### Purple Day Each year, [The Anita Kaufmann Foundation](https://purpledayeveryday.org/) and the [Epilepsy Association](https://epilepsyassociation.com/) host the Purple Day® Around the World Epilepsy Education Conference with the hope of de-stigmatizing epilepsy by educating the public. The last three years, the conference has been held at Disney World®. This year, due to the worldwide pandemic, this FREE conference is being held virtually, giving the opportunity for more to attend without safety and travel concerns. #### Conference Agenda The virtual conference will take place March 24th thru March 26th. The first two days will consist of educational and advocacy sessions with well-known doctors, experts and epilepsy organizations. - [Coach Caprice O’Bryant](https://purpledayeveryday.org/advocate/caprice-obryant/), Fitness Expert, Entrepreneur & Author, will hold daily warm–ups in support of [Lace Up For Epilepsy](https://purpledayeveryday.org/events/lace-up-for-epilepsy/) to get us moving and ready to learn - Dr. Dan Freidman of NYU Langone School of Medicine will discuss epilepsy and technology, homeschooling us on the latest options out there and how it can help you manage your epilepsy lifestyle - Pamela Kelly, US VA Acting ECoE National Administrative Director, will homeschool us on what the VA currently offers Veterans with epilepsy - Purple Day(R) Every Day [Brigid Fennessy Baffico](https://purpledayeveryday.org/wp-content/uploads/2016/02/16-13-AKF-Brigid_posterB.compressed_CRPD-NEW-scaled.jpg), a music teacher, will discuss the importance of education in epilepsy - Dana Simmons, PhD, a neurobiologist, microscopy Artist & medical writer will help us find meaning through science art - Dr. Eric Kossoff of Johns Hopkins Children’s Center will homeschool us on ketogenic diet basics and how it may help people with epilepsy - Our keynote session features Dr. Rob Trobliger of Northeast Regional Epilepsy Group and centers on epilepsy and mental health - Kim Davidson CEO of BC Epilepsy Society and founder of I AM A VOICE for Epilepsy Awareness™ takes on global advocacy - Jamie Wissinger, Blogger, Podcaster and Epilepsy Advocate will share five mindset tips for managing epilepsy - Eric Carter, author of young adult book series, Chance Dawson Stories, will be introducing Chance Dawson, a fictional character, who represents people with epilepsy. - Tammy Smits Sommer and McKinley, Purple Day® Everyday Day Ambassadors, be homeschooling us on [The Great Purple Cupcake Project](https://purpledayeveryday.org/events/the-great-purple-cupcake-project-for-epilepsy/) and how YOU can get involved [**Learn more about speaker sessions and what to expect!**](https://livingwellwithepilepsy.com/wp-content/uploads/2021/03/Conference-Agenda-Slides.pdf) #### Register Today Nearly 1000 people have registered for Purple Day® Every Day’s annual epilepsy education conference. [Registration is open](http://www.purpledayeducationconference.com/) and the conference has more epilepsy education sessions planned than ever before. Check out our growing list of speaker sessions, all focused on specific key areas of epilepsy education. [REGISTER TODAY ](http://www.purpledayeducationconference.com/) #### Virtual Expo Other leading organizations across the epilepsy spectrum will host virtual booths on various epilepsy topics. These organizations include: [Danny Did Foundation](https://www.dannydid.org/), [4 Paws for Ability](https://4pawsforability.org/), [The Epilepsy Store](https://epilepsystore.com/), [Brain and Life](https://www.brainandlife.org/), [Chelsea Hutchison Foundation,](https://chelseahutchisonfoundation.org/) [Seizure Tracker](https://seizuretracker.com/), [CURE](https://www.cureepilepsy.org/), [PAME](https://www.pameonline.org/), [Matthews Friends](https://www.matthewsfriends.org/), [Hannahtopia](https://hannahtopia.com/), [TS Alliance](https://www.tsalliance.org/), [Capabilities](http://www.essny.com/), [BC Epilepsy](http://bcepilepsy.com/), [Practical Neurology](https://practicalneurology.com/), [Dup15Q Alliance](https://dup15q.org/), [The Charlie Foundation](https://charliefoundation.org/), [Epilepsy Association](https://epilepsyassociation.com/), [Purple Day® Everyday](https://www.purpledayeveryday.org/), [Dravet Foundation](https://www.dravetfoundation.org/), [Purple Day Asia](https://www.purpledayasia.org/). And of course, Living Well With Epilepsy will have a booth too! #### Presenting Sponsor In addition to these great sessions, the Presenting Sponsor, [Eisai Inc.](https://us.eisai.com/), will offer two important sessions on hot topics in epilepsy from their perspective. For more information on the Purple Day® Around the World Epilepsy Education Conference, contact Lena Lache at Lena@akfus.org. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Events and Initiatives --- ### [Why was the June Epilepsy Blog Relay Delayed Until July?](https://livingwellwithepilepsy.com/advocacy-awareness/why-was-the-june-epilepsy-blog-relay-delayed-until-july.html) **Published:** July 1, 2021 **Author:** Jessica K. Smith **Excerpt:** I am planning to run the Epilepsy Blog Relay this July to fulfill the promise I made to you and to myself. I hope you will follow along. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/03/B80419FB-EBCD-42F5-90D0-1DDAEB85364B_1_105_c-300x225.jpeg "B80419FB-EBCD-42F5-90D0-1DDAEB85364B_1_105_c – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2021/03/B80419FB-EBCD-42F5-90D0-1DDAEB85364B_1_105_c.jpeg)*Chose this photo because Im starting to feel like I did something wrong in a past life*#### June/July Epilepsy Blog Relay What happened to the June Epilepsy Blog Relay you ask? Well, I have discovered that when you have a parent with advanced [Alzheimer’s Disease](https://livingwellwithepilepsy.com/2021/personal-epilepsy-stories/managing-epilepsy-when-youre-in-the-middle-place.html); another parent with advanced COPD, heart disease, diabetes and recovering from sepsis; and a child who was in a severe accident which required a 2 week stay in the hospital and 3 week stay in a physical rehabilitation center, and continues to be non-weight bearing for another month or so; it can be tough to get much if any work done. Obviously, I should not be surprised by this. #### Parenting and the Middle Place Any [special needs parent](https://livingwellwithepilepsy.com/2021/personal-epilepsy-stories/8-ways-to-support-families-affected-by-severe-epilepsy.html) who has a child that needs assistance with most activities of daily living has my undying respect. My respect was there already, but now I understand on a new level. In my case, the hope is that this is a short term situation. We hope our daughter will regain her independence and be able to do all the things she dreams of now, and in the future. #### Not loving this period of my life I’ll be honest, this is not an awesome time right now. But we all have these periods in life right? I’ve had them before and survived them. If I can survive this, I know I will have a period of bliss with my loved ones. (ugh-That’s a little corny even for me) But seriously I do believe if I can just buckle down and get through this I will learn something and be better for it. #### Epilepsy Blog Relay In any case, I am planning to run the Epilepsy Blog Relay this July to fulfill the promise I made to you and to myself. I hope you will follow along. -Jess ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Advocacy and Awareness --- ### [Educate one girl and you can change a whole community](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/educate-one-girl.html) **Published:** December 31, 2017 **Author:** Maureen Knorr **Excerpt:** As my regular readers know, I have traveled to Tanzania over the past few years. On one of these trips in 2015, I met a lovely young lady named Eppy. Since we met, my family has sponsored her last two years of education. **Content:** [![Eppy, student in Tanzania](https://livingwellwithepilepsy.com/wp-content/uploads/2017/12/25408884_1511809806.8158-300x200.jpg "25408884_1511809806.8158 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/livingwell/educate-one-girl.html/attachment/25408884_1511809806-8158)As my regular readers know, I have traveled to [Tanzania](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/mar-17-ebr-posts/epilepsy-blog-relay-epilepsy-advancements-in-developing-countries.html) over the past few years. On one of these trips in 2015, I met a lovely young lady named Eppy. Since we met, my family has sponsored her last two years of education. I am honored to report that she has graduated at the top of her class each year! Eppy has now been accepted to the country’s top medical school in Dar es Salaam. To help her with tuition, we are raising $3,000 for Eppy to attend her first year of medical school. As I mentioned, Eppy has been accepted to the medical program at The Muhimbili University of Health and Allied Sciences (MUHAS) in Dar es salaam, Tanzania. She is an exceptional student that has always been top of her class, and now we are excited to see her excel in her first year of medical school. #### Help educate one girl Money is the only thing holding her back from her dream of becoming a doctor. Help Eppy acheive her dreams by making a donation to her 2018 tuition. 100% of donations go to Eppy; all adminisitrave fees are covered by [Provision Charitable Foundation](http://www.provisioncharitablefoundation.com/). [Donate Today ](https://www.gofundme.com/foreppy) Any donation is great appreciated. Tuition includes boarding, school supplies, and food! **I personally will be giving the money to the school and checking up on her. 100% of your donation goes to her schooling,** we pay all administration fees out of pocket. **Educate one girl, change the entire community.** Happy New Year, Maureen *And if this isn’t a good time for the pocketbook – just share the link with your friends and family! Education is a cause everyone can get behind!* ![author avatar](https://secure.gravatar.com/avatar/21dd1cb76084b50fb7cccc4f2b6135cd43d1c082e5b039d6d4a99606803dc749?s=300&d=mm&r=g) Maureen Knorr I’m Maureen, and I have epilepsy. You’re probably reading this because either you have epilepsy, or you love someone that has epilepsy. Whatever sparked your curiosity, I am happy to be sharing my experiences with you. From having seizures in foreign countries to begging pharmacists that don’t speak English for medication, I can definitely say that it's been an interesting journey. Hopefully reading about my ups and downs, and my everyday and not so everyday adventures will inspire you too! Welcome to my life of living well with epilepsy! [See Full Bio](https://livingwellwithepilepsy.com/author/maureen-knorr) [ ](https://livingwellwithepilepsy.com/author/maureen-knorr) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://maureenknorr) **Categories:** International Epilepsy --- ### [The Sacred Disease: Desperation drives a young doctor to open up about her epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/the-sacred-disease.html) **Published:** January 3, 2016 **Author:** Jessica K. Smith **Excerpt:** In "The Sacred Disease: My Life with Epilepsy", Kristin Seaborg, MD shares her personal epilepsy story. She was diagnosed with temporal lobe epilepsy at age 18. Though her seizures were managed fairly well during college, the grueling hours of residency training, caused Dr. Seaborg's seizures to slip out of control. **Content:** *[![The Sacred Disease cover](http://livingwellwithepilepsy.com/wp-content/uploads/2015/12/TSD_cv_HR-194x300.jpg "TSD_cv_HR – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/?attachment_id=13650)In the fall of 2002, I was in the midst of my pediatric residency training at the University of Wisconsin. I was diagnosed with temporal lobe epilepsy at age 18, but was fortunate enough to travel through college and most of medical school with few seizures and a stable dose of one medication. When I met the grueling hours of residency training, however, my seizures slipped quickly beyond my control. Although my neurologist suggested that I would be a candidate for a temporal lobectomy, I was reluctant to pursue surgery before I exhausted all medication options.* *The following is an excerpt from my book, **[The Sacred Disease: My Life with Epilepsy](http://www.amazon.com/Sacred-Disease-My-Life-Epilepsy/dp/1513705482/ref=sr_1_1?ie=UTF8&qid=1449453087&sr=8-1&keywords=the+sacred+disease).** In writing my story, I hope to raise awareness about epilepsy and decrease the stigma associated with seizures. The following scene depicts when I definitively made the decision to have [epilepsy](http://livingwellwithepilepsy.com/epilepsy-by-the-numbers) surgery.* --- #### EXCERPT **THE NEXT MORNING,** I swallowed one small pink tablet along with my usual three pale pink capsules, pushed back my sense of doubt, and pasted on my best smile. I focused my gaze at the picturesque Wisconsin Capitol building, a perfect white dome in the middle of a green island, while Andrew drove me to the work. Soon the brown cluster of hexagonal pods known as the University of Wisconsin hospital came into my view, the first commute safely behind me. At least for the first few hours, my new medication hadn’t caused any adverse effects. I began just another regular day. Over the next several weeks, I slowly increased the dose of one medication while decreasing the other. I was more tired than usual, but truly no more than my normal post-call state. Residency already taught me to function through a constant low-level exhaustion. I considered it a victory when I finally reached the target dose of lamotrigine without an outward sign of the fluctuating medication levels. Soon enough, however, my seizures returned. At first, they were intermittent and sporadic. Before long, I expected uninvited interruptions to my day or sleep every one to two weeks. I expressed concern during my next appointment with Dr. Rodgers. “What now?” I asked as I studied the walls lined with enlarged pictures of anti-epileptic medications. Dr. Rodgers perused the pack of my medical records. He contemplated my options for a long time and finally recommended that I try treatment with oxcarbamazapine, or Carbatrol, next. The pharmacist Mitch Caros appeared within minutes to guide me through the switch from lamotrigine to oxcarbamazepine. Again he recited a list of daunting potential side effects, including dizziness, drowsiness, fatigue, nausea, insomnia, acne, or constipation. I wore a noncommittal gaze while my mind ventured into the world of unknowns and possibilities. What if this medication didn’t work either? What if it did? What would it take to send my seizures back into hibernation? The following morning, I swallowed the first dose of my newest medication with a belly full of hope. I arrived at work early to review the charts and overnight events on a large group of hematology/oncology patients before the attending doctors came in. As the first year resident, it was my job to review the medications, vital signs, laboratory values, and progress made in the previous 24 hours so the medical team could make decisions and guide care for the new day. I sat in a small conference room the size of a compact minivan and realized that I was jotting notes not with one pencil, but two. Instead of focusing on one computer monitor in front of me, I saw two. Alarmed, I spun around to look outside the conference room door where the mother of one of my patients – and her phantom counterpart – stood in the doorway with a concerned look on her face. She’d spent the night in the hospital room with her child, so she was still dressed in flannel pajama pants and brown footie slippers. Her hands were huddled around her large mug of coffee as if it were a campfire. “How are you today, Dr. Seaborg? You look tired.” “I am,” I responded. How could I explain that I was starting a new medication, seeing double, and yet participating in the care of her child? “I was just wondering if you had the results of Cody’s lab tests yet?” I typed my password and username into the computer with considerable effort and found Cody’s most recent lab results. With one eye closed, my vision wasn’t as bad. I reviewed the daily blood counts with Cody’s mother and breathed a sigh of relief when I watched the cotton tassels on her slippers pad back down the hall. The morning crept on, and I slowly collected data from the computer in my one-eyed ogre stance while the tiny room filled with a menagerie of medical students, residents, and attending physicians. With my pre-rounding work done, I sat on a cushioned bench in the crowded conference room and waited for rounds to begin. Abruptly, a familiar sensation engulfed me. First I swallowed repetitively, then I flushed warm with more swallowing. Next I smacked my lips and my whole face felt as if it were on fire. Although I was acutely aware that something was amiss, the subtle motions of my smacking lips and recurrent swallowing went unnoticed by the other members of the busy medical team. The unpleasant feelings of my complex partial seizure crescendoed and then decrescendoed until finally I wished I could curl up and fall asleep. The seizure abated after a minute or more. As I regained full awareness, I looked up and saw the tail of the white coat of Dr. Isaac, the pediatric neurosurgeon, flutter into the room as if he were an angel. Through my double vision and post-seizure cloudy thinking, my only coherent thought was: I needed to have epilepsy surgery to find a cure. I cared for dozens of patients collaboratively with Dr. Isaac and admired his sense of commitment, sincerity, and expertise. So I looked up at the two Dr. Isaacs who stood next to me and asked, “Do you do temporal lobectomies?” Confusion painted his face. “Yes. Why?” “I think I need one.” The floodgates opened and I tripped over my words as I tried to explain what I’d been through in the past six months, much less the past twenty-five years, I brushed aside my secrecy and pride when I pleaded for help while sitting amongst ten people who knew nothing about my health history. “My neurologist says that I have temporal lobe epilepsy and a focal lesion that can be removed surgically, but I’ve been trying medications first. I’ve switched medicines now three times in three months. Today I’m seeing double and I feel terrible. Just now I had another complex partial seizure. Nothing is working and I think I just need to go ahead and get this over with. “Can you help me?” --- [![Kristin Seaborg, MD](http://livingwellwithepilepsy.com/wp-content/uploads/2015/12/RCT_5100-230x300.jpg "RCT_5100 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2016/guest-posts/the-sacred-disease.html/attachment/rct_5100)Kristin Seaborg is a pediatrician, parent, and advocate for epilepsy awareness. She received her undergraduate degree from the University of Wisconsin and her M.D. from the University of Wisconsin School of Medicine and Public Health. Kristin’s memoir, [The Sacred Disease](http://www.amazon.com/Sacred-Disease-My-Life-Epilepsy/dp/1513705482/ref=sr_1_1?ie=UTF8&qid=1449453087&sr=8-1&keywords=the+sacred+disease), chronicles her experiences with seizures and epilepsy over twenty years. Kristin can be found at [www.kristinseaborg.com](http://www.kristinseaborg.com/) 100% of the author royalties from purchase of The Sacred Disease will be donated to [CURE](http://cureepilepsy.org). #### To Purchase The Sacred Disease can be purchased on Amazon here: [Purchase Your Copy ](http://www.amazon.com/Sacred-Disease-My-Life-Epilepsy/dp/1513705482/ref=sr_1_1?ie=UTF8&qid=1449453087&sr=8-1&keywords=the+sacred+disease) [![sacred banner-2](http://livingwellwithepilepsy.com/wp-content/uploads/2016/01/sacred-banner-2.png "sacred banner-2 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2016/guest-posts/the-sacred-disease.html/attachment/sacred-banner-2) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Stories **Tags:** doctor with epilepsy, The Sacred Disease --- ### [Epilepsy Blog Relay™: Staying strong no matter what](https://livingwellwithepilepsy.com/life-with-epilepsy/fitness/staying-strong-no-matter-what.html) **Published:** March 1, 2016 **Author:** Guest Contributor **Excerpt:** As a baseball player having so many seizures (over 40-50) and being put on all sorts of medication impacts performance. So staying strong mentally and physically is really important to me. **Content:** [![jhanley](http://livingwellwithepilepsy.com/wp-content/uploads/2016/02/jhanley-e1456006242972-212x300.png "jhanley – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/jhanley)***This post is part of the [Epilepsy Blog Relay™](http://livingwellwithepilepsy.com/) which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!*** #### Joey’s Story Growing up I was a pretty normal kid with no signs of epilepsy. I developed some ticks/twitches at age 5 and severe anxiety but that was about it. It wasn’t until my freshman year when I was 15 that I had my first seizure on my way to an old girlfriends house in the passenger seat of a car. Actually, that was the first one that we knew instantaneously it was a seizure. My FIRST seizure was Christmas night 2012. I woke up at around 1:30. I felt sick. Feeling as if I was going to get ill I went to the bathroom and lied on the floor moaning in pain. I then proceeded to get up and sit down on the toilet with my head in my hands trying to just collect myself. I don’t remember exactly how long this went on until I passed out. My epilepsy had just begun. I went face first into the glass doors of the shower. I smashed it into pieces leaving shards of that glass door in my face and at the same time the toilet bowl was kicked out from its place as I fell. I finally came to wearing nothing but boxers (took everything off thinking I would puke) and covered in a literal pool of my own blood. I thought it was just from my nose until I reached up to touch my face and felt blood run down from there as well. Running my hands up and down I felt small shards of glass stuck in parts of my face and one large piece stuff right under my cheek. Pulling it out was just as painful. I stood up looking around, crying, screaming, in tears and terrified. The wall was a murder scene. I looked at the mirror and what I saw was horrifying. I walked toward the mirror but the next thing I saw was the floor inches from my face again and had another seizure. The rest of the story is just too explicit to tell and not my whole story. I had a few more seizures that week until being seizure-free for a year with medication. My next seizure after that, ironic enough, was coming back from the hospital. I had stopped taking my medication because I was so healthy. It was a bad one. For 30 minutes I was going in and out of it. That one took quite the toll on my body. For a week I was very weak and sick. But that wouldn’t be the first time seizures like that would happen. I’m a baseball player so me having so many seizures (over 40-50 I stopped counting) and being put on all sorts of different medication really impacts performance as well. Baseball is my second love in life after family. So, I don’t know if you could understand how I felt this summer but you can know the depression I fell into when I had 11 seizures and lost 30 lbs. going from 180 to 150. Not to even mention impacting performance, I had to end my season. To someone who relies on baseball to free their mind, this was so devastating! Falling into this state of depression I stopped cutting my hair and shaving. When I say I stopped shaving and cutting my hair I had a big beard and scraggly curly monkey hair. I stopped taking care of myself. Stopped eating. Stopped caring. I would wake up each day thinking there’s no meaning and saying out loud “&$%* this” to myself. At one point I just straight up hated myself. I was giving up. #### Staying strong There are SO many other things that I wish I could tell you but it would take too many words, too many painful memories, and too many tears. I’ve had seizures that could have killed me or paralyzed me badly. I’ve fallen from over 5 ft. high in the air and bashed my head so hard I probably had concussions. Yet I would will play baseball even the day after I had these. I had to deal with becoming ill between innings after I would pitch that inning. Coming back from this summer was so difficult. I just 2 weeks ago gained all my weight back and earlier in the year I threw my hardest averaging 90 mph and touching 91 mph. I actually wanted to just quit but my dad gave me the gift of believing in me. I just needed someone to believe and he did and for that I’ll love you forever dad! And mom, I’ll love you forever for doing everything you’ve done for me. You’re a saint. Ty, my little brother, I’ll love you forever for your sacrifice and love. Olivia, my older sister, I still insist I’m your older brother but I’ll love you forever for your support. If you’re reading this I hope you realize how much I love y’all! Thank you! To anyone struggling as I have and do, take this one day at a time. This disease is no joke and nothing small at all. We are not defined by this. Epilepsy is not us, we just embrace it as a part of us for we can’t deny we live with it everyday. But, never shall it absorb us. #### My advice - Fight it each day with aggression - Take it a day at a time - Love yourself - You’re not alone - Someone out there cares and had your back - Epilepsy makes us stronger Lastly, believe in your dreams no matter how cliché it may sound. Love yourself and everyone. Thank you for listening to my story and I’d love to hear yours as well. Love to everyone who deals with this! Stay purple strong! I’m Joey Hanley and I live with epilepsy. Thank you! --- Joey Hanley is a Senior right-handed pitcher for the Prairie Ridge High School Baseball Team in Crystal Lake, IL. He is also an ambassador for the Epilepsy Foundation’s nationwide program, [Athletes VS Epilepsy](http://www.epilepsy.com/make-difference/get-involved/athletes-vs-epilepsy). ***NEXT UP: Be sure to check out the next post tomorrow at [LivingWellWithEpilepsy.com](http://livingwellwithepilepsy.com) for more on Epilepsy Awareness. For the full schedule of bloggers visit [livingwellwithepilepsy.com/epilepsy-blog-relay](http://livingwellwithepilepsy.com/epilepsy-blog-relay).*** ***Be sure to check out ***the Epilepsy Blog Relay*** [Thunderclap](https://www.thunderclap.it/projects/38104-epilepsy-blog-relay-mar-16) to raise epilepsy awareness. And don’t miss your chance to connect with bloggers on the #LivingWellChat on March 31 at 7PM ET.*** ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Fitness **Tags:** Epilepsy Blog Relay --- ### [Epilepsy Blog Relay™: The Embrace Watch Story](https://livingwellwithepilepsy.com/life-with-epilepsy/rosalind-picard-on-the-embrace-watch.html) **Published:** March 8, 2016 **Author:** Guest Contributor **Excerpt:** Rosalind W. Picard, Sc.D. recalls, "I’ll never forget the first time I saw the [Embrace Watch] data." While I set out to build a wristband to measure stress in daily life, I realized that we’d built a wristband that could detect generalized tonic-clonic seizures. **Content:** [![20141119072644-onwrist](http://livingwellwithepilepsy.com/wp-content/uploads/2015/03/20141119072644-onwrist-300x200.jpg "20141119072644-onwrist – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/20141119072644-onwrist)***This post is part of the [Epilepsy Blog Relay™](http://livingwellwithepilepsy.com/) which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!*** #### Rosalind Picard on the Embrace Watch I’ll never forget the first time I saw the data. At MIT, we built a wrist-worn sensor to monitor the “autonomic stress” that usually climbs with a fight-or-flight response. My student had borrowed two of our sensors to take home to see what was stressing out his little brother, who was non-speaking and had autism. As I sat at my laptop, reviewing the boy’s data, most of it looked normal. Then I clicked to the next day. My jaw dropped. Data from one of his wrists showed a peak that was greater than ten times a typical stress response. His other wrist showed no response. I muttered, “Both sensors must be broken: How could a person be “stressed” that high, but on just one side of their body?” I tried to debug it. Perplexed, I called my student at home. He checked the date & time stamp, and his diary, and told me that was when his brother had a grand mal seizure. A learning adventure began: Sometimes a patient’s hair could stand on end on only one arm before a seizure. Another patient might have goose bumps on only one arm. Boston Children’s Hospital’s Chief of Neurosurgery helped get ethics approval and we added our wristbands into his epilepsy study. Video-EEG’s, synchronized with our sensor, showed that 100% of the grand mal (or “generalized tonic clonic” (GTC seizures) gave our wrist sensor significant responses. For most seizures the responses appeared on both wrists. #### SUDEP When we asked why the skin response we measured was so big, we encountered another surprise. First, a few words about [SUDEP](http://www.epilepsy.com/learn/impact/mortality/sudep/sudep-faq) – sudden unexpected death in epilepsy. SUDEP kills more people in the USA every year than [house fires](https://www.usfa.fema.gov/data/statistics/) or [Sudden Infant Death Syndrome](http://www.cdc.gov/sids/data.htm), and everybody knows about those. People with one or more GTC’s in the last year are at heightened risk of SUDEP. Scientists have studied patients who died of SUDEP while wearing an EEG. In all cases, the EEG went “flat” after the seizure, but the person was still alive for many minutes after the seizure, during which time they may still be able to fully recover. This flattening of the brain waves is called “Post-ictal Generalized EEG Suppression” (PGES). The reason this is important to our story is we learned that the bigger the response measured on the wrist, the longer the PGES. This surprising finding is now published in a top medical journal (Neurology), led by my PhD student Ming-Zher Poh, and has been replicated since. Apparently, PGES does not mean your whole brain is “shut down” – only the activity near the surface. Another vital finding showed that a seizure can activate a part of your brain that can shut off breathing – the “amygdala”. When the amygdala gets atypical stimulation, the signal we measure can become very large. #### Making lives better While I set out to build a wristband to measure stress in daily life, I realized that we’d built a wristband that could detect GTC seizures, and signal that they might be potentially dangerous. The latest studies show that SUDEP is less likely to happen if somebody checks on you after a GTC. Simply saying your name, flipping you over, stimulating you, may in some cases restart breathing that amygdala activation turned off. If you have GTCS’s make sure you are not alone when they happen, especially in the minutes afterward! Inspired by these findings, we took the most up-to-date advanced technology and created Embrace Watch. We made it beautiful so many people without Epilepsy tell us they want to wear Embrace just because it’s a super-cool looking way to tell time. And, soon it will be logging sleep, activity, and autonomic stress. But most importantly, it can run an app to detect “unusual events” and send an alert to somebody you designate. I’m excited to say that this week, our hard-working tiny team at [Empatica](https://www.empatica.com/) (*full disclosure: I own founder’s stock, donate my time to help them, and chair their board*) has finally shipped the first beta versions of Embrace Watch. We still have a lot of work to do to make it do everything we want it to do, but finally it is on its way. I hope it will help make many lives better. --- **[![RedJacket4(1)](http://livingwellwithepilepsy.com/wp-content/uploads/2016/02/RedJacket41-150x150.jpg "RedJacket4(1) – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/redjacket41)Professor Rosalind W. Picard, Sc.D.** is founder and director of the [ Affective Computing Research Group](http://www.media.mit.edu/affect) at the Massachusetts Institute of Technology (MIT) Media Lab, co-director of the Media Lab’s [ Advancing Wellbeing Initiative](http://well.media.mit.edu), and faculty chair of [MIT’s Mind+Hand+Heart Initiative.](http://mindhandheart.mit.edu) She has co-founded [Empatica, Inc.](http://empatica.com) creating wearable sensors and analytics to improve health, and [Affectiva, Inc.](http://affectiva.com) delivering technology to help measure and communicate emotion. --- ***NEXT UP: Be sure to check out the TWO posts tomorrow. One can be found at [LivingWellWithEpilepsy](http://livingwellwithepilepsy.com) and the other can be found at [Management:Living With Epilepsy](http://management.smithjryan.com). For the full schedule of bloggers visit*[ *the March Participants gallery.* ](http://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-mar-2016-participants)** ***You can still participate in the Epilepsy Blog Relay [Thunderclap](https://www.thunderclap.it/projects/38104-epilepsy-blog-relay-mar-16) to raise epilepsy awareness. And don’t miss your chance to connect with bloggers on the #LivingWellChat on March 31 at 7PM ET.*** *Disclaimer: this is NOT a sponsored post and Living Well With Epilepsy does NOT receive any income or benefit as a result of this post.* ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Life With Epilepsy **Tags:** Epilepsy Blog Relay, Epilepsy Tech --- ### [Epilepsy Blog Relay™: A new frame of reference](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-blog-relay-a-new-frame-of-reference.html) **Published:** November 1, 2016 **Author:** Guest Contributor **Content:** *[![eg-headshot](http://livingwellwithepilepsy.com/wp-content/uploads/2016/10/EG-headshot-300x300.jpg "eg-headshot – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2016/blog-relay/epilepsy-blog-relay-a-new-frame-of-reference.html/attachment/eg-headshot)This post is part of the [Epilepsy Blog Relay™](http://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-nov2016participants) which will run from November 1 through November 30. Follow along and add comments to posts that inspire you!* #### Eric’s Story At 42, I had my life completely together, working in technology, making a good deal of money, 1 kid in college, another about to go and a third just starting high school. My wife works at the high school all three kids were at, lots of colleagues, friends and several hobbies, all in all a good life. Earlier this year, I had a grand mal that put me in the hospital, there had been warning signs, but because we did not know what to look for, it came as a huge surprise. The epilepsy diagnosis came as a shock, my being drug resistant was an even bigger shock. The neuro telling me I had probably had epilepsy since infancy was a huge shock. The biggest shock came from the VNS (inside epilepsy joke). I have a cardio problem that compounds the epilepsy problem as well. I have not reached the 18 month mark post VNS insertion yet, however, the neuro and the cardio docs are already concerned, my seizure activity has gone up 300% for several months now. The neuro discussed [SUDEP](http://livingwellwithepilepsy.com/iamsudepaware) for the first time this month, I had to sit the family down and explain what that meant which was a difficult conversation for my 15 year old. All of this is the downside. #### A new frame of reference On the upside is a bunch of stuff I never would have expected. My friends rallied around me in a way I NEVER would have expected. They also made jokes like getting me to stir their drinks when I had a seizure (goofballs). I received support from people I haven’t talked to in over a decade. I have had people who don’t know me express concern, tell me they are praying for me, and bring us food, as simple expressions of kindness. At first, I was embarrassed, especially after that first grand mal in the middle of church. I was mad at myself and humiliated. But also humbled at how concerned people I don’t even know were and how my friends made sure to cover everything and keep most of them at bay. I assumed at first it was just pity, but the more people I have shared my story with, the more I learn that most people are genuinely interested in the problem and don’t pity me but do feel some amount of concern or empathy. In addition, I have had conversations with so many males with chronic illnesses. I would have never had these discussions if not for the epilepsy. I have found out that we are not doing a great job with chronic illnesses in this country period but males especially seem to just try to ignore it or suffer in silence. I at first thought I was just pathetic or weak for having seizures or being in pain. I realize that there are so many people who are either a similar or the exact same boat. I am starting an initiative in my community to get people talking about their struggle and know they aren’t alone. I don’t know where this is going to take me, I don’t even know how much better or worse the epilepsy will get and that’s okay. There are days where I am so tired I can barely get out of bed or days where my brain is on fire. But I am not depressed about it anymore because I accepted what is happening to me, my new frame of reference, and now, each day is an opportunity to see if I can make it count. --- **[![myepilepsyhero_facebookheroimage_eventpage](http://livingwellwithepilepsy.com/wp-content/uploads/2016/10/MyEpilepsyHero_FacebookHeroImage_EventPage-1-e1477745200960-150x150.jpg "myepilepsyhero_facebookheroimage_eventpage – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/portfolio/nov2-16/attachment/myepilepsyhero_facebookheroimage_eventpage-2)NEXT UP:** *Be sure to check out the next post tomorrow by Greg Grunberg of Star Wars, Star Trek and Heroes fame at for more on epilepsy awareness. For the full schedule of bloggers visit [livingwellwithepilepsy.com](http://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-nov2016participants).* **DON’T MISS IT:** *Don’t miss your chance to connect with other bloggers LIVE on the [\#LivingWellChat](https://twitter.com/search?src=typd&q=%23livingwellchat) on November 30 at 7PM ET.* ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories **Tags:** Epilepsy Blog Relay --- ### [Rosario's Story: Learning from pain](https://livingwellwithepilepsy.com/epilepsy-stories/rosarios-story-learning-pain.html) **Published:** December 9, 2016 **Author:** Guest Contributor **Excerpt:** I've learned to breathe through the pain but, I can’t lie. Every time I see something that reminds me the worst days of my life, fear seizes me. **Content:** [![](http://livingwellwithepilepsy.com/wp-content/uploads/2016/12/13692726_10154109671600865_3156771452590588725_n-300x300.jpg "rosario – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2016/personal-epilepsy-stories/rosarios-story-learning-pain.html/attachment/13692726_10154109671600865_3156771452590588725_n)*This [personal story](http://livingwellwithepilepsy.com/category/personal-epilepsy-stories) was submitted by Rosario. I hope you enjoy learning about her experience.* #### Rosario’s Story I was diagnosed with generalized epilepsy when I was sixteen. By then I had never heard the term “epilepsy” before, and I don’t remembered feeling scared. To be honest it wasn’t until last summer when I was about to turn twenty-four that I became aware of how epilepsy was destroying me, of how much I hated it. It’s hard to see how your friends have graduated from college, and even hardest try to explain why you still have not. Struggling with memory and concentration problems has not been easy, but I have being able to handle it. I have never been worried about telling people I have epilepsy, but I know they think I will fall any minute from a seizure, including my friends. I get tired of just thinking about how many people I have had to explain that my epilepsy manifests itself with absences. In June, my neurologist gave me the option of allowing me to drive or reducing medications. Tired of so many pills I opted for the latter. The result was a tonic-clonic seizure. After that I broke. A dysthymia (persistent depressive disorder) of perhaps over a year turned into chronic depression. I had never experienced so much pain in my entire life. The anxiety, the panic attacks, the sense of guilt that you can’t explain even to yourself is something that I don’t wish on anyone. I remembered the first time I woke up at night feeling that I wasn’t the same person, something was wrong. I felt like if I had lost my life in a couple of hours. The next day I spent hours walking from side to side at my house asking to myself “Why?” And that was the story of my life for the next five months. Yeah, I’m just getting out of rehab. People said, “you have to stay positive and think that your brain is a liar”, but that was not an easy task. I was fighting with voices in my head that were saying, “yes” all the time and I was trying to convince myself, “no that’s not true”. And when I thought I had won then it came the body pain. I was about to become crazy. I sweated every time I had a panic attack and was crying almost all the time. I perceived that I could not tolerate darkness and that I needed light all the time to the point that I booked a hotel room in order to escape from my overwhelming thoughts. From my perspective the world looked appetizing, but I can’t enjoy it as before. It was really frustrating. As a college student I even considered quitting the current semester since I was feeling so bad. Instead I continued. My faith in God and trusting that I have a purpose in this world made me get up when I felt more dead than alive. I had to understand that we tend to get depressed more easily than the rest, as our neurotransmitters are more sensitive. I looked for help and learning the “breathe to relax” exercise was the best thing ever happened to me and I’m grateful for that. #### Breathe through the pain I can’t lie. Every time I see something that reminds me the worst days of my life until now, fear seizes me. As I mentioned before every time I feel bad I just take a deep breath and let my brain know that there’s no reason to be afraid, everything is going to be fine. I’m looking forward to become active in the seeking of a cure for epilepsy. This experience has totally changed my life, but for good. It has made me a stronger woman and a better human being. #### Your Turn Let Rosario know she is not alone with a comment below or by submitting your own *[personal story](http://livingwellwithepilepsy.com/share-your-epilepsy-experience)*. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories --- ### [Epilepsy Blog Relay™: Jenny LaBaw on Epilepsy and Fitness](https://livingwellwithepilepsy.com/life-with-epilepsy/fitness/epilepsy-blog-relay-jenny-labaw-on-epilepsy-and-fitness.html) **Published:** March 2, 2016 **Author:** Guest Contributor **Excerpt:** As a fitness professional, I encourage other people living with epilepsy (and their families) to focus on their health. This means sleeping well, keeping stress low, eating healthy and keeping active. **Content:** [![IMG_3479](http://livingwellwithepilepsy.com/wp-content/uploads/2016/02/IMG_3479-300x300.jpg "IMG_3479 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2016/blog-relay/epilepsy-blog-relay-jenny-labaw-on-epilepsy-and-fitness.html/attachment/img_3479)***This post is part of the [Epilepsy Blog Relay™](http://livingwellwithepilepsy.com/) which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!*** #### Jenny’s Story As a strength and conditioning coach, athlete and avid outdoors woman, there is no doubt that I have a passion for health and wellness. Throughout my life I have been an athlete in many different arenas from collegiate soccer, softball and track to elite CrossFit to recreational skiing and mountain biking. This last fall I took on my greatest physical endeavor to date. In 31 days, I ran 500 miles across the state of Colorado over the Rockies. The toll this adventure took on me physically, mentally and emotionally is unexplainable. It changed me as an athlete, as a friend, as a professional, as a person…in a positive way. It was the most grueling, exhausting and rewarding thing I have ever done. I think the physical reason are obvious, but the reason that I was changed as a person was because I saw the greater good in human kind. I witnessed people of all walks of life reaching out to help someone they didn’t even know. You see, this run wasn’t for the personal gratification of achieving something slightly insane (that was just a bonus). This run was for something way bigger than myself. It was for all the little kids that are fighting or will fight…For all the adults who have lived their life ashamed of being different…For all the families who have spent countless hours worrying for the loved ones. I ran for epilepsy. #### On Epilepsy I have epilepsy. When I was 8, I was diagnosed with simple partial gelastic seizures. Despite the struggle that accompanied this, I lived a normal life. My parents and my brother were so supportive and never let me believe that I couldn’t do something. I got good grades. I played every sport. I had friends. I got my license. I went to college. But I had this dark secret that I was so ashamed of. It wasn’t until 2012, that I mustered up the guts to share my story. With the encouragement from my boyfriend, we released a video for the world to see (Jenny LaBaw: Living with Epilepsy). The response was overwhelmingly positive and eventually led me to the point where I am today. I am no longer ashamed and in fact quite the opposite, I am proud. I am an advocate for Athletes Vs Epilepsy and share my story with anyone who will listen. I want people to be educated about epilepsy on all fronts. I want people living with epilepsy to find their strength within and lead the life they want. [![IMG_3454](http://livingwellwithepilepsy.com/wp-content/uploads/2016/02/IMG_3454-e1456057109846.jpg "IMG_3454 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2016/blog-relay/epilepsy-blog-relay-jenny-labaw-on-epilepsy-and-fitness.html/attachment/img_3454) #### On Fitness As a fitness professional, I want to encourage people living with epilepsy (and their families) to focus on their health. This means sleeping well, keeping stress low, eating healthy and keeping active. I know that taking care of my body has greatly impacted the success I have had over my epilepsy. The fear of exercise for people living with epilepsy can result in over-protection, fear of isolation/exclusion, and restriction from activity. Taking the proper steps and progression into an active lifestyle will benefit their health, their mood, their self-esteem and social integration and possibly even their seizure activity. What are the proper steps? - Consult with your doctor. - Less is more at first - Start with walking. - Join a gym and get guidance from a fitness professional - Over time slowly increase intensity and volume. - Listen to Your Body - If it doesn’t feel right, it’s probably not. - Keep a journal - Log your mood, how you feel before, during and after. - Safety First - Respect your doctors orders/recommendations. - Temperature Regulation: Don’t get too hot. - Exercise on soft surfaces (woodchips, grass, sand, mats) - Wear proper head protection if participating in contact or impact sports (biking, skiing, contact sports, etc) - Buddy System: exercise with friends so that if you do get in trouble they are there to help. - Wear ID: name, emergency contact, medication, etc #### On Imagining Possibilities I am not saying, stop what you’re doing and go run 500miles. I am saying start today at giving yourself a chance to be the healthiest version of yourself you can. You never know where that will lead. --- [![IMG_4447](http://livingwellwithepilepsy.com/wp-content/uploads/2016/02/IMG_4447-300x288.jpg "IMG_4447 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2016/blog-relay/epilepsy-blog-relay-jenny-labaw-on-epilepsy-and-fitness.html/attachment/img_4447)**Bio:** Jenny LaBaw is a health and wellness coach, an athlete, a daughter, sister, girlfriend and mom to her two yellow labs. She is an avid outdoors woman, an adventurist and also enjoys a hot cup of tea and a good book. She also has epilepsy. Jenny uses her education about health and wellness and her athletic ability to inspire others to be the best versions of themselves they can be. **Social Media Handles:** FaceBook: Jenny LaBaw or athlete page Instagram: @jenlabaw Twitter: @jenlabaw YouTube: Jenny LaBaw Website: [www.labawlife.com](http://www.labawlife.com) ***NEXT UP: Be sure to check out the next post tomorrow at [LivingWellWithEpilepsy.com](http://livingwellwithepilepsy.com) for more on Epilepsy Awareness. For the full schedule of bloggers visit [livingwellwithepilepsy.com/epilepsy-blog-relay](http://livingwellwithepilepsy.com/epilepsy-blog-relay).*** ***Be sure to check out the Epilepsy Blog Relay [Thunderclap](https://www.thunderclap.it/projects/38104-epilepsy-blog-relay-mar-16) to raise epilepsy awareness. And don’t miss your chance to connect with bloggers on the #LivingWellChat on March 31 at 7PM ET.*** ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Fitness **Tags:** Fitness --- ### [Words resonate: College roommate reconnects over epilepsy](https://livingwellwithepilepsy.com/life-with-epilepsy/words-resonate-college-roomate-reconnects-epilepsy.html) **Published:** April 4, 2016 **Author:** Jessica K. Smith **Excerpt:** I heard from my college roommate the other day with a story of witnessing a woman having a seizure in New York City and what the experience was like. **Content:** [![Fordham girls](http://livingwellwithepilepsy.com/wp-content/uploads/2016/04/1927823_1068335835011_9639_n-e1459697374623-300x254.jpg "Fordham girls – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2016/personal-epilepsy-stories/words-resonate-college-roomate-reconnects-epilepsy.html/attachment/1927823_1068335835011_9639_n)*Kath beautiful as ever in center Photo courtesy of RDunican Moriarty* *I heard from my college roommate the other day. She sent me a story of witnessing a woman having a seizure in New York City and what the experience was like. Kathy has allowed me to share her experience with you.* #### Kathy’s Story I wanted to share a little story from this morning. As I was walking into work this morning right at 49th and 6th avenue I witnessed a woman start to collapse. I figured she was fainting and she had a young girl holding her and guiding her to the ground. Immediately, a crowd formed and as I made my way to the corner (right in front of Magnolia Bakery) I heard that she was having a seizure. As you know in NYC people do help out but this time as I was turning the corner walking around the woman who now had a tremendous crowd around her I noticed, no one was doing anything AND all the police barricades from the St. Patrick’s Day parade were still out. She had collapsed right next to the barricade. #### College lesson Then I heard your voice in my head – I remember you telling me back when we were at Fordham and rooming together the following three things; DO NOT pull my tongue, make sure nothing is around me that I may crash into and hurt myself and DON’T restrain me. Right then I turned back around and tried to help. Funny, much of the crowd had dispersed. I asked this young girl, probably 17, who was holding the woman what happened. She said she had a seizure. She said she had them before but was not diagnosed as epileptic. I called 911 and the person on the line walked me through some stuff. We rolled the woman on her side and of course foam starting to spew out. I kept the woman on her side by standing over her so she then would not hit the barricade. The poor young girl was the woman’s daughter, they were on vacation with this other family who had arrived on the scene from Ohio. I stayed with them until the fire department arrived. They thanked me profusely and we said goodbye! So, I did the right thing today and it felt good to help someone, however, not sure I would have if it were not for rooming with you and you instructing me so well. See, I did listen to everything you told me!!!! -Kath *I have long admired Kathy’s intellect and strength, and was always a touch jealous of her looks (but don’t tell her that). Kath is a true friend and I am lucky to have her in my life.* ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Life With Epilepsy **Tags:** First Aid, Friends --- ### [Introducing our newest writer on epilepsy and fitness](https://livingwellwithepilepsy.com/life-with-epilepsy/fitness/abby-writes-on-epilepsy-fitness.html) **Published:** April 16, 2016 **Author:** Abby Gustus-Alford **Excerpt:** I have a passion for fitness. I love being active. It’s fun for me, and about once a year, I start getting an itch to do a half marathon. **Content:** #### [![Abby - Biking](http://livingwellwithepilepsy.com/wp-content/uploads/2016/04/Abby-Biking-300x292.png "Abby - Biking – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2016/epilepsy-and-fitness/abby-writes-on-epilepsy-fitness.html/attachment/abby-biking)Epilepsy and Fitness I am pleased to introduce you to Living Well With Epilepsy’s newest contributing writer, Abby Gustus Alford. Abby is a woman living with epilepsy in Texas. Abby will write about epilepsy and fitness, two topics she is passionate about. #### Abby’s Story Don’t run that far, Abby. You might have a seizure. Every single time I start training for a half marathon, I get the same response from the people who love me those most. These are my biggest supporters, my mom, my husband, my dad… It’s not that they don’t want me to succeed and finish a half marathon. They want that for me more than anything. But, they think me putting my body through something that difficult has the potential to cause a seizure. So, each time I sign up I get the same response, “That might cause a seizure, are you sure that’s a good idea?” #### The fitness itch I have a passion for fitness. I love being active. I love running. I love going to work out classes with friends. It’s fun for me, and about once a year, I start getting an itch to do a half marathon. That happened to me last fall. I knew that I wanted to run a half marathon, and no matter what anybody said, that’s what I was going to do. Having epilepsy was not going to stop me. I understand where the people who love me are coming from. 13.1 miles is really hard on your body. And, let’s be honest, those of us with epilepsy completely know pushing ourselves to our limits can sometimes cause a seizure. It has happened to me before. I think I can keep up with all of my friends, and then, boom – I have a seizure. #### Race Day But, Sunday, January 17th, I laced up and ran the Houston Half Marathon. It was my eighth half marathon to put in the books, and I could not be prouder of my accomplishment! It was one of my slower races to be completely honest. I was not surprised, though, because my official time of 2:41:09 was right in line with all of my training runs. When I set out to run this race, I had in my head that I just wanted to finish. I wasn’t going to go for my very best time. I wasn’t going to set any records, but I was going to run for Team Epilepsy and make it count. For some reason, and I’m sure if you are living with epilepsy you can appreciate it, but accomplishing big fitness goals feels fantastic! Running 13.1 miles for anybody is an accomplishment, running 13.1 miles being able to call my biggest supporters and say “I finished”, well, it just feels really great. Each and every one of my biggest supporters always gets a little nervous the day of the race for obvious reasons, but each and every one of them is just as proud of me when I finish as I am of myself! January 17th, I was one proud lady! --- [![Abby - professional](http://livingwellwithepilepsy.com/wp-content/uploads/2016/04/Abby-professional-300x300.jpg "Abby - professional – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2016/epilepsy-and-fitness/abby-writes-on-epilepsy-fitness.html/attachment/abby-professional)Abby Gustus Alford was diagnosed with epilepsy at the age of 12 after she had multiple grand mal seizures over a six-month period. After graduating from Purdue with a B.A. in Mass Communications and receiving her Master’s in Journalism from Northwestern University, Abby started working full time in marketing and communications. She currently works in commercial real estate industry, but spends all of her extra time getting healthy and staying fit. When she’s not out running or biking, she spends her time volunteering for two organizations she is passionate about, The Epilepsy Foundation of Texas and Girls on the Run Greater Houston. She loves spreading her message of hope and works with people to assure them, they too can lead happy, healthy lives… with epilepsy. ![author avatar](https://secure.gravatar.com/avatar/fc6da7355dbaf3b5333da396f069a80e1cb0f14ba7b3b3c9d7276454b2c67b50?s=300&d=mm&r=g) Abby Gustus-Alford Abby Gustus Alford was diagnosed with epilepsy at the age of 12 after multiple grand mal seizures over six-mos. She has a BA from Purdue and her Master’s from Northwestern. [See Full Bio](https://livingwellwithepilepsy.com/author/abby) [ ](https://livingwellwithepilepsy.com/author/abby) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://abbyg_alford) **Categories:** Fitness --- ### [An interview with Greg Grunberg and Phil Gattone](https://livingwellwithepilepsy.com/advocacy-awareness/interview-with-greg-grunberg.html) **Published:** May 5, 2016 **Author:** Jessica K. Smith **Excerpt:** An interview with Greg Grunberg, Heroes Reborn and Star Wars: The Force Awakens actor, and Phil Gattone, President and CEO of the Epilepsy Foundation about the revitalization of the TalkAboutIt.org site. **Content:** [![Greg and Phil](http://livingwellwithepilepsy.com/wp-content/uploads/2016/05/Greg-and-Phil-300x225.jpg "Greg and Phil – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2016/epilepsy-news/interview-with-greg-grunberg.html/attachment/greg-and-phil)Greg Grunberg, *Heroes Reborn* and *Star Wars: The Force Awakens* actor, and Phil Gattone, President and CEO of the Epilepsy Foundation spoke with Jessica Keenan Smith, Founder of Living Well With Epilepsy about the revitalization of the [TalkAboutIt.org](http://talkaboutit.org) site. **Living Well With Epilepsy:** Greg, can you tell us more about your personal experience with epilepsy? **Greg Grunberg:** My son Jake started having seizures when he was 7, he is 19 now, and we have been through the rollercoaster. He’s had two brain surgeries and every kind of seizure imaginable \[and now\] he is very close to being controlled. [http://livingwellwithepilepsy.com/wp-content/uploads/2016/05/Clip\_Greg-Grunberg.m4a](http://livingwellwithepilepsy.com/wp-content/uploads/2016/05/Clip_Greg-Grunberg.m4a) **LWWE:** Greg, tell us more about [TalkAboutIt.org](http://talkaboutit.org) and what makes the site unique? **GG:** TalkAboutIt.org is a place where people can lean in, tell their story, they can feel comfortable and part of a community. It’s something I saw a need for right away. There is such a stigma attached to epilepsy and seizures in general. When in fact it is like any other condition and if everyone is educated and free to talk about it then it’s not scary. **LWWE:** Phil, tell us about your connection to epilepsy and how you got involved in the Epilepsy Foundation. **Phil Gattone:** My wife Jill and I have a son, Phillip, who has epilepsy. He had first seizure when he was four years old. \[When he was diagnosed,\] it was 1991 so we were in libraries searching for information. We were fortunate to find an Epilepsy Foundation parent support group and they connected us with an epilepsy center. Phillip has had two brain surgeries and has since graduated college. **LWWE:** Greg, How do you think projects like yours can change the conversation? **GG:** When you go on [TalkAboutIt.org](http://talkaboutit.org) you’ll see every actor that I’ve ever worked with and they are tackling topics from bullying to what to do if someone has a seizure. The site is evolving all the time. **LWWE:** How does your son feel about talking about epilepsy. **GG:** Jake is very comfortable talking about it. In fact, there are times when I will go to a school for an in service and we ask the teachers and staff what they think you should do if someone has a seizure. The next day people come up to Jake with questions. **LWWE:** Greg, Do you find yourself “Talking about it” in unexpected situations? **GG:** I find myself all the time in an elevator or on a set and someone will come up to me and strike up a conversation about epilepsy and seizures. It’s something you don’t have to keep to yourself anymore. **LWWE:** Phil, what motivated the [Epilepsy Foundation](http://epilepsy.com) to get involved with Greg and TalkAboutIt.org? **PG:** What greg has done with his celebrity status to bring this message forward to the epilepsy community and to the general public is unique and we are so grateful. --- **Greg Grunberg**, *Heroes Reborn* and *Star Wars: The Force Awakens* actor is an avid epilepsy advocate who is partnering with the Epilepsy Foundation to launch the new website *TalkAboutIt.org,* which is sponsored by Sunovion. With new interactive features, shareable tools, and resources for the epilepsy community, *TalkAboutIt.org* unites celebrities with top health care experts to share content that addresses misconceptions about this condition. **Phil Gattone, M.Ed.**, President and CEO of Epilepsy Foundation has served as Epilepsy Foundation President and CEO since 2012. Under his leadership, the Epilepsy Foundation successfully merged with the Epilepsy Therapy Project and re-launched *[epilepsy.com](http://epilepsy.com)* as the primary epilepsy education portal in the world. Phil has a long personal history with the epilepsy community as a father, leader, and educator. At the age of four, his son Philip, now 28, was diagnosed with epilepsy and continues to live with epilepsy today. Since then, Phil has educated thousands of people across the country about epilepsy and its impact on families. He has also developed curriculum for educators on strategies for building self-esteem and academic achievement in students with epilepsy, as well as a curriculum for students to become better-educated about seizures and epilepsy first aid. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Advocacy and Awareness **Tags:** Epilepsy Foundation, Heroes Reborn, Star Wars --- ### [Jenny's Story: I'm not afraid anymore](https://livingwellwithepilepsy.com/life-with-epilepsy/mentalhealth/im-not-afraid-anymore.html) **Published:** May 11, 2016 **Author:** Guest Contributor **Excerpt:** I've had epilepsy since I was 14 (now 31) and about 6 years ago I began to suffer from post-ictal psychosis. **Content:** [![Holiday photo 2](http://livingwellwithepilepsy.com/wp-content/uploads/2016/05/Holiday-photo-2-e1462753911301-300x257.jpg "Holiday photo 2 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2016/personal-epilepsy-stories/im-not-afraid-anymore.html/attachment/holiday-photo-2)*This [personal story](http://livingwellwithepilepsy.com/category/personal-epilepsy-stories) was submitted by Jenny who is living with epilepsy and now feels she is not alone thanks in part to your stories. I hope you enjoy getting to know Jenny’s experience with post-ictal psychosis.* #### Jenny’s Story I’ve had epilepsy since I was 14 (now 31). It was 6 years ago that I first started to suffer from post-ictal psychosis. These are side-effects that only occur after a seizure; similar to short-term schizophrenia. They include paranoia (becoming positive that people were talking about me), depression, insomnia and hearing voices if I haven’t slept for the night. It was mainly the fear of this problem that scared me the most. The question I asked every time I heard a voice was, “How is this possible?” It just sounded so real and I didn’t know how it could be happening. #### Knowledge is power I decided that if I answered this question then it wouldn’t be so terrifying when it did happen. So I began reading up about naturally occurring brain chemicals and neurotransmitters. This knowledge made hearing voices scientific and not supernatural. Now, if I have trouble after I seizure I make a bit of fun out of it, telling people: “I’ve just had a seizure so don’t take it personally if I tell you to stop talking about me!” The main cause of insomnia used to be the fear of hearing voices if I hadn’t slept. Now it’s not a problem because it’s not something I’m scared of. I know it’s possible and will tell someone: “I’m hearing a voice so I need to take some rispiridone.” #### Let Jenny know she’s not alone by leaving a comment below. #### Or, [submit your personal story](http://livingwellwithepilepsy.com/share-your-epilepsy-experience) to Living Well With Epilepsy today. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Mental Health **Tags:** epilepsy psychosis neurosurgery, Stigma --- ### [Epilepsy Blog Relay™: Maureen finds peace despite her fears](https://livingwellwithepilepsy.com/life-with-epilepsy/travel/maureen-finds-peace-despite-her-fears.html) **Published:** June 15, 2016 **Author:** Maureen Knorr **Excerpt:** The top of the waterfall in Iceland was just as beautiful and tranquil as described, perfectly reflecting this newfound sense of peace I had found. **Content:** *[![Maureen in Iceland](http://livingwellwithepilepsy.com/wp-content/uploads/2016/06/2015-08-21-12.45.52-300x225.jpg "2015-08-21 12.45.52 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2015-08-21-12-45-52)This post is part of the [Epilepsy Blog Relay™](http://livingwellwithepilepsy.com/epilepsy-blog-relay) which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!* #### Maureen’s Story Want to hear a bizarre secret? I’m terrified of walking down stairs! And I have developed some seriously bizarre habits because of this fear. To name a few, I won’t walk downstairs unless my husband is in front of me. I also grip onto the hand railing as if my legs could give out at any moment. This entails both hands on the railing with one elbow pressed in for speed control. And in the mornings I sit and scoot down the stairs in a toddler-like fashion. Casually trotting downstairs is out of the question! The stair distress comes from numerous seizure stories ending with, “And the next thing I remember is waking up, laying at the bottom of the staircase.” I’ve had countless tumbles down staircases; drifting back into consciousness with the question of, “how did I get here?” floating around my head as I wiggle my toes and fingers to assess the damage. I’m not the only person living with epilepsy that has felt like a chalk drawing etched into the pavement at a crime scene. Loosing consciousness at the most inconvenient time is part of living with epilepsy. So, it’s no wonder I look at stairs like an obstacle course! #### Finding peace [![2015-08-21 11.30.51 (1)](http://livingwellwithepilepsy.com/wp-content/uploads/2016/06/2015-08-21-11.30.51-1-225x300.jpg "2015-08-21 11.30.51 (1) – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2016/blog-relay/jun-16-lwwe-posts/maureen-finds-peace-despite-her-fears.html/attachment/2015-08-21-11-30-51-1)Skógafoss, a waterfall in the South of Iceland, was a doorway that forced me to put aside this anxiety. It’s a powerful fall from below, but the real majesty is climbing around 200+ stairs for the spectacular view and serenity. With my first step up I was already thinking about the possible tumble down, but I wasn’t going to let that stop me. Instead of silently letting these thoughts circulate round and round (which is what I usually do!), I confessed to my husband that I was already dreading coming back down. I told him countless stories of somersaulting down flights of stairs, waking up in a twisted formation, and clueless of what happened. I wanted him to understand why in the middle of a beautiful hike in Iceland, my mind was already fixated on the journey back down. The more I acknowledged my [fear,](http://livingwellwithepilepsy.com/2016/personal-epilepsy-stories/im-not-afraid-anymore.html) the more at peace I felt. The top of the waterfall was just as beautiful and tranquil as described, perfectly reflecting this newfound sense of calmness I had found. We sat in silence admiring surroundings. Watching the water tumble down reminded me of how powerful and unpredictable the world can be, and that included my sense of self in this world. I gave into the idea that unpredictability is the way of everyone’s and everything’s life. And that shouldn’t cause fear or change our behavior. When we started our decent, I scolded myself for dwelling on the unpredictably of [epilepsy](http://livingwellwithepilepsy.com/epilepsy-101). There was nothing positive about focusing on the “would ifs”, and no matter how slowly I took each step or how hard I gripped the handrail, it wouldn’t stop a seizure from knocking me down. There was no point for me to adopt these crazy preventative habits when they wouldn’t prevent a seizure anyways! With that in mind, I let the hand railing go and trotted down, two steps at a time! As silly as it sounds, I felt empowered and like a different person! Next time I find myself over-analyzing each step down, I’ll remind myself how great if feels to push those thoughts aside and know that even though, I can’t control when a seizure will hit, I can control how I live each moment. --- **NEXT UP:** *Be sure to check out the next post tomorrow at [http://inmegansshoes.com/ ](http://inmegansshoes.com/)for more on Epilepsy Awareness. For the full schedule of bloggers visit [livingwellwithepilepsy.com](http://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-jun-2016-participants).* **DON’T MISS IT:** *Don’t miss your chance to connect with bloggers on the #LivingWellChat on June 30 at 7PM ET.* ![author avatar](https://secure.gravatar.com/avatar/21dd1cb76084b50fb7cccc4f2b6135cd43d1c082e5b039d6d4a99606803dc749?s=300&d=mm&r=g) Maureen Knorr I’m Maureen, and I have epilepsy. You’re probably reading this because either you have epilepsy, or you love someone that has epilepsy. Whatever sparked your curiosity, I am happy to be sharing my experiences with you. From having seizures in foreign countries to begging pharmacists that don’t speak English for medication, I can definitely say that it's been an interesting journey. Hopefully reading about my ups and downs, and my everyday and not so everyday adventures will inspire you too! Welcome to my life of living well with epilepsy! [See Full Bio](https://livingwellwithepilepsy.com/author/maureen-knorr) [ ](https://livingwellwithepilepsy.com/author/maureen-knorr) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://maureenknorr) **Categories:** Travel **Tags:** epilepsy, Epilepsy Blog Relay, Iceland, peace, stairs, Travel --- ### [Emily's Perspective: Coping Styles](https://livingwellwithepilepsy.com/life-with-epilepsy/mentalhealth/emilys-perspective-coping-styles.html) **Published:** September 6, 2016 **Author:** Emily Lawrence (Nee Donoghue) **Excerpt:** Living with epilepsy can come with all types of difficulties. Learn about the different coping styles and how to stay healthy with Emily's advice. **Content:** **![Coping Styles](http://livingwellwithepilepsy.com/wp-content/uploads/2016/08/Coping-Styles-240x300.jpg "Coping Styles – Living Well With Epilepsy")**Epilepsy is a neurological disorder that causes nerve cells in the brain to become disrupted, resulting in seizures. When somebody is first diagnosed with a condition, family members experience a whole range of feelings. The experience of witnessing your child’s first seizure, a family member’s seizure or a friend/work colleague’s seizure can be devastating and scary. It is important to find the coping styles that works for you and your family when you deal with all of these feelings. #### Reacting to a Diagnosis People react to situations in many different ways. A parent’s reaction to their child’s diagnosis could be: - **Anger, shock, denial**: Why my child? Why our family? This can’t be true. - **Confusion**: What is epilepsy? What is causing my child’s epilepsy? Will my child have more seizures? What are medication side effects? - **Sadness**: I want to be able to fix this or make it go away, but I can’t. - **Guilt**: Why didn’t we notice something earlier? What did we do wrong? Is there something I did to cause this? - **Fear** **and worry**: What does this mean for my child’s life and future? - **Anxiety** **and frustration**: Parents may feel anxious and frustrated because of the unpredictable nature of the seizures - **Hope**: Most parents express a hope that the seizures are only temporary, or that the seizures will be controlled In general, the diagnosis of epilepsy, and the associated learning and/or psychosocial difficulties that may accompany epilepsy, present new challenges for parents and children as they attempt to adjust to the diagnosis and develop coping strategies that will assist them in living with epilepsy. #### My Coping Experience Over the years I have noticed that my [family](http://livingwellwithepilepsy.com/2016/emilys-perspective/my-familys-epilepsy-experience.html) and I have experienced different emotions at different times of my diagnosis as we have learnt more about my condition. Talking about them, learning to manage them, and getting our questions answered all contributed to an important part of adapting and learning to cope with epilepsy. I found different types of [treatment](http://livingwellwithepilepsy.com/finding-a-treatment) over the years to help me cope with my condition such as CBT (Cognitive Behavior Therapy) and support networking teams that can give support. By learning more about a condition, you can find better ways to cope. An individual may have questions, or may not want to think or talk about the diagnosis, but there are ways to cope with that. #### Tips to Stay Healthy One of my top tips to readers is that understanding your condition can help you control it. Understand what is important to your health: - **Take your medication correctly** - I recommend having a pill box dated ‘Monday-Friday’ to help you or your child to remember to take the prescribed medicine. I used to struggle with forgetting my pills so investing in a pot really did help. If you struggle to get your medications on time, speak to your GP and see if you can get your prescriptions delivered to you to make it less stressful for you. - **Get enough sleep** - Did you know that some people have their first and only seizures after an “all-nighter” or after not sleeping well for long periods? If you have epilepsy, lack of quality [sleep](http://livingwellwithepilepsy.com/2016/leilas-ideas/leilas-ideas-excuse-sleep.html) makes most people more likely to have seizures. It can even increase the intensity and length of seizures. If sleep is a problem for you and, if like me, you are more prone to seizures if you are tired, then I advise you monitor your sleeping patterns and habits. Keep a little diary of what time you go to bed, what time you get up, and how you feel in the morning. Before bed, turn off TVs, computers, and other blue-light sources before you go to bed. - **Wear a medical alert bracelet** - [Medical alert](http://livingwellwithepilepsy.com/2015/leilas-ideas/medical-id-bracelets-where-do-you-stand-on-the-issue.html) jewelry is a must have in my opinion, but some people don’t like the idea of it-but you really can get some lovely alert jewelry suitable for everyone. I [wrote a review](http://livingwellwithepilepsy.com/2015/product-review/a-review-of-medical-id-squid-square.html) a while back about an ID square that is a great piece of kit. Owning some alert jewelry helps people you are with and medical professionals know about you and your condition. It can save your life. - **Educate yourself** - Last but not least-Have a look at educating yourself and your friends and family about epilepsy so that they understand the condition. Use appropriate coping styles to stay healthy. Try to ignore negative reactions from people. Live as independently as possible and try not to constantly worry about having a seizure. #### We are here for you [Living Well With Epilepsy](http://livingwellwithepilepsy.com) and the entire epilepsy community are here for you. It can help to find an epilepsy support group where you can meet people who understand what you’re going through whether it is online or in person. Just look at me, blogging changed my life! #### Your Turn You are welcome to [share your own epilepsy experience](http://livingwellwithepilepsy.com/share-your-epilepsy-experience) or comment on this article below. #### *“No matter how “normal” people look, living “ordinary” lives, everyone has a story to tell.”* ![author avatar](https://secure.gravatar.com/avatar/5523d28ae8bbaedc9d082d51d29393ca490379cd31464b99ab3c7d50a49362ac?s=300&d=mm&r=g) Emily Lawrence (Nee Donoghue) 25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England. Emily's Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10. Based in UK. [See Full Bio](https://livingwellwithepilepsy.com/author/emilyd) [ ](https://livingwellwithepilepsy.com/author/emilyd) **Categories:** Mental Health **Tags:** Emily's Perspective, epilepsy, Epilepsy Awareness, Epilepsy in Everyday Life, Living Well With Epilepsy --- ### [Tell the world: #IAMSUDEPAWARE](https://livingwellwithepilepsy.com/aboutepilepsy/sudep/tell-the-world-iamsudepaware.html) **Published:** September 22, 2016 **Author:** Jessica K. Smith **Content:** ### [![iamsudepaware-4up](http://livingwellwithepilepsy.com/wp-content/uploads/2016/09/IAMSUDEPAWARE-4UP-300x300.png "iamsudepaware-4up – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/iamsudepaware/attachment/iamsudepaware-4up)Tell the world about SUDEP Many people are unaware they are at risk of SUDEP or Sudden Unexpected Death in Epilepsy. That’s why **SUDEP Aware**, **Living Well With Epilepsy** and **Lundbeck** have joined forces to shine a spotlight on SUDEP Awareness Day, October 23. In fact, each year an estimated 1 in 1000 people with epilepsy die from SUDEP. That’s approximately 65,000 people around the world who will die each year as a result of SUDEP. ### You can make a difference The [\#IAMSUDEPAWARE social media campaign](http://livingwellwithepilepsy.com/iamsudepaware), will kick off September 23 and will run through October 23. This is your opportunity to tell the world “#IAMSUDEPAWARE”. Every time the hashtag is Tweeted or Retweeted, [Lundbeck](http://www.lundbeck.com/us/our-commitment) will donate $1 to [SUDEP Aware](http://www.sudepaware.org/) — up to $5,000! Donations will be made to SUDEP Aware, a Canadian charity founded in 2008, dedicated to raising SUDEP Awareness. ### How to participate There are several ways you can participate. #### 1| Participate in the #IAMSUDEPAWARE Thunderclap Sign up for the IAMSUDEPAWARE Thunderclap. This platform will, on October 23, simultaneously blast one message on the Twitter, Facebook or Tumblr accounts of all those who participate. You can [learn more about what a Thunderclap is](http://livingwellwithepilepsy.com/iamsudepaware) and how to participate [here](http://livingwellwithepilepsy.com/iamsudepaware). #### 2| Send your own tweet using the #IAMSUDEPAWARE hashtag If you prefer to send your own tweet between September 23 and October 23 just remember to include the hashtag, #IAMSUDEPAWARE. ##### Here are a few suggestions: > #IAMSUDEPAWARE are you? Did you know SUDEP stands for Sudden Unexpected Death in Epilepsy? Don’t miss SUDEP Awareness Day on October 23. > #IAMSUDEPAWARE Don’t miss SUDEP Awareness Day on October 23. > It’s never been easier to support SUDEP Awareness. Tweet #IAMSUDEPAWARE thru 10/23 and [@LundbeckUS](https://twitter.com/LundbeckUS) will donate $1 to [@SUDEPAware](https://twitter.com/SUDEPaware) > #IAMSUDEPAWARE are you? Send out a caring thought to those who have lost their loved ones on SUDEP Awareness Day on October 23. > Did you know SUDEP stands for Sudden Unexpected Death in Epilepsy? Don’t miss SUDEP Awareness Day on October 23. #IAMSUDEPAWARE > Show the world #IAMSUDEPAWARE when you sign up for this Thunderclap campaign. Help spread #sudepawareness[ @jessicaksmith](https://twitter.com/jessicaksmith) [@LundbeckUS](https://twitter.com/LundbeckUS) [@SUDEPAware](https://twitter.com/SUDEPaware) #### 3| Donate directly to SUDEP Aware Participants can also contribute directly to the SUDEPAware. [Donate to SUDEP Aware ](https://www.canadahelps.org/en/charities/sudep-aware) Watch here for more updates! ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** SUDEP --- ### [Epilepsy Blog Relay: One woman has four tonic clonic seizures on her daughters graduation day](https://livingwellwithepilepsy.com/aboutepilepsy/seizure-types-syndromes/grand-mal-tonic-clonic/tonic-clonic-seizures-on-graduation-day.html) **Published:** June 24, 2018 **Author:** Guest Contributor **Excerpt:** I suffered a series of tonic clonic seizures on the day my daughter graduated from college, which also happened to be my birthday. **Content:** **[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/04/FB_IMG_1512954443927-300x225.jpg "FB_IMG_1512954443927 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/fb_img_1512954443927)This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from June 1 to June 30, 2018. Follow along!** #### Patti’s Story I suffered a series of [tonic clonic seizures](https://livingwellwithepilepsy.com/diagnosis) on the day my daughter graduated from college, which also happened to be my birthday. My husband and I had a long drive up to Pensacola. We had to pack her up in just one day and then the next day was the graduation and my birthday. The day after graduation we planned to drive back home. [A busy few days by anyone’s standards](https://livingwellwithepilepsy.com/2018/aboutepilepsy/family-pushing-boundaries-of-lgs.html). On graduation day, everyone was excited as we help pack her up. Once we finished, we finally made it to Pensacola Bay Center. When the Ceremony began, I saw my beautiful daughter walking around and up to the stage to get her diploma! At that moment I was holding back tears with a great big smile. Later on we celebrated not just her graduation and my birthday, too. When our family celebration was finished my daughter went out with her friends, and my husband and I went back to the hotel. That night I got into bed and all of a sudden BOOM! I began to have a [Tonic Clonic Seizure](https://livingwellwithepilepsy.com/2016/traveling-with-epilepsy/traveling-with-epilepsy-a-sleepover.html), then another, winding up with a total of four Tonic Clonic Seizures! I woke up in the morning with an awful migraine. Of course we still had to drive back home. I had to wear a baseball cap with sunglasses all the way home! That’s my personal epilepsy story. #### Related: [My epilepsy doesn’t just affect me](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/epilepsy-blog-relay-epilepsy-doesnt-just-affect-me.html) --- **NEXT UP:** Be sure to check out the next post by Sheila at . **TWITTER CHAT:** Save the date for the #LivingWellChat on June 30 at 7PM ET. [![epilepsy blog relay](https://livingwellwithepilepsy.com/wp-content/uploads/2018/05/june-2018-social-EBR1-150x150.png "june 2018 social EBR(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-participants/attachment/june-2018-social-ebr1)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our [generous sponsors and partners](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-sponsors-and-partners)! [Participate as a November Blogger ](http://bit.ly/Nov18EBRForm) [Become a November Sponsor ](http://bit.ly/1819EBRMk) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Grand Mal / Tonic Clonic **Tags:** #epilepsy #seizures, tonic clonic, Tonic Clonic Seizures --- ### [Epilepsy Blog Relay: A way through a diagnosis of epilepsy](https://livingwellwithepilepsy.com/aboutepilepsy/seizure-types-syndromes/grand-mal-tonic-clonic/a-way-through-the-diagnosis.html) **Published:** March 14, 2019 **Author:** Guest Contributor **Excerpt:** My first grand-mal seizure landed me in the hospital and really opened my eyes. When I received a diagnosis of epilepsy, I was just 23. **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/12/Mar-2019-Epilepsy-Blog-Relay_square1-300x300.jpg "Mar 2019 Epilepsy Blog Relay_square(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/mar-2019-epilepsy-blog-relay_square1)This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) which will run from March 1 through March 31. Follow along!*** #### A diagnosis of epilepsy The journey began for me a little before April of 2008. My first grand-mal seizure that landed me in the hospital really opened my eyes. At the time I was diagnosed, I was 23 and just starting in my adult life. Doctors advised me against having a family, and over the next few years I spent my time re-learning to speak, and feel “OK” being around a crowd. Flash forward to now, January 2019. It took many tests and trying to get a neurologist that would help, but I finally found answers. After having an EEG done, it was concluded that my seizures are not grand-mal, but they are absence seizures and will not leave. --- At first, I spent my life so isolated and scared. But, when I became a mom in 2011, my world changed; I’ve been made to be her mom. I know that I am supposed to display strength and courage to her through me. So, each day may be a struggle and the world may honestly never understand. But, as long as my battle with Epilepsy is with me on top, life is good! --- **Related: [Newly Diagnosed? Start Here](https://livingwellwithepilepsy.com/start-here)** --- ***NEXT UP:*** Be sure to check out the next post by Mike at [livingwellwithepilepsy.com ](http://livingwellwithepilepsy.com)for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay posts](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) you may have missed. [Share your story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Grand Mal / Tonic Clonic **Tags:** epilepsy diagnosis, epilepsy mom --- ### [Tamu's Journey with Myoclonic and Tonic Clonic Epilepsy](https://livingwellwithepilepsy.com/aboutepilepsy/seizure-types-syndromes/grand-mal-tonic-clonic/myoclonic-and-tonic-clonic-epilepsy.html) **Published:** November 4, 2021 **Author:** Guest Contributor **Excerpt:** Tamu was diagnosed with epilepsy at 14. She experienced myoclonic seizures for a several years prior to this diagnosis, and had her first tonic clonic seizure in the summer of 2014 **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/11/pexels-rodnae-productions-7249351-scaled.jpg "pexels-rodnae-productions-7249351 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2021/11/pexels-rodnae-productions-7249351-scaled.jpg)Myoclonic and Tonic Clonic Epilepsy I was diagnosed with epilepsy at 14. I had been suffering, alone, from myoclonic seizures for a couple of years prior to this diagnosis, but had no clue they were seizures. So when I had my first [tonic clonic seizure](https://livingwellwithepilepsy.com/2013/personal-epilepsy-stories/tonic-clonic-seizures.html) in the summer of 2014, it was terrifying for those around me. The ambulance was called, I was taken to the hospital, tests were run. About a month or two later, I was told it was [epilepsy](https://livingwellwithepilepsy.com/2021/personal-epilepsy-stories/5-tips-for-dealing-with-an-epilepsy-diagnosis.html) but that it might be a one-off seizure and won’t come back. Unfortunately, it did. #### Leaning on Gratitude I am 21 now and for the past seven years I have been adjusting to these changes, adjusting to all my [myoclonic](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/experience-with-myoclonic-epilepsy.html) and tonic clonic seizures, adjusting to different [sleeping patterns](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/sleep-and-epilepsy.html), and adjusting to three different types of medication. One important lesson that I have learned from all of this is that I have it so good. So incredibly good. I’ve been blessed on this journey that is different and I’ve had the opportunity to learn so much along the way. I am currently on medication and have been seizure-free for more than a couple of months. I’ve been studying at university, I’ve been learning a new language. I’ve been spending time with my family and friends. I have been going to sleep earlier than usual, waking up earlier than usual. I’ve been really good and I praise and thank God for that. #### Believing in Prayer My [seizures tend to be triggered](https://livingwellwithepilepsy.com/2020/epilepsy-blog-relay/four-sleep-strategies.html) by any changes or difficulties in sleep. This could be lack of sleep, a change in sleeping schedule, being abruptly woken up, etc. So, as a Muslim, having to wake up for the early dawn prayer was quite difficult. There were many times where I would wake up and start having jerks or [myoclonic seizures](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/experience-with-myoclonic-epilepsy.html). But I loved my prayers and so I didn’t allow myself to give up and stop waking up for them, I didn’t want myself to sleep through the whole night. I wanted to wake up and pray. When I had those seizures, I knew that I just had to get on the prayer mat and start praying. Throughout the years I had seizures in the middle of the night, alone most of the time, trying to get ready for prayer and not wanting to wake anyone up just yet who would try and stop me from praying (although, I do not recommend this, please be careful and–if able–wake someone whilst having seizures). That relief I felt when I realized that my seizure stopped in the middle of prayer was the feeling that made me realize I was never truly alone in those times. Now, I wake up for the dawn prayer and I feel fine. I wake my family up and I pray with my younger sister, in peace. I feel incredibly grateful knowing that my love for my prayers allowed me to persevere and carry on which, in turn, has allowed me to experience the sweet moments now that I have with my family in the mornings. #### Recognizing the Importance of Mental Health My [mental health](https://livingwellwithepilepsy.com/2017/livingwell/rachel-tackles-the-mental-health-issue.html) has also been a really tough issue to deal with. It’s not something I really admitted to having a problem with until this past year. Even with all the changes since age 14, I have never really been asked properly about my mental health since my diagnosis and no help has been offered. Unfortunately, I feel as though this may be the same for many others with epilepsy. I’ve dealt with my mental health myself, but I am glad to say I have an amazing [support system](https://livingwellwithepilepsy.com/2018/livingwell/relationships/expanding-a-support-system-through-encouraging-relationships.html). It can be traumatizing coming from experiences where you have no control over your body, knowing you’re about to deal with an immense amount of pain and that you can’t do anything about it. It has perhaps been even more traumatizing for my mother who has had to see her daughter cry countless times over it and not be able to stop it from happening. Which means I’m [not the only one](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/rest-for-caregivers.html) dealing with mental health issues in my family. #### Learning to Embrace Help from Loved Ones But [having my family](https://livingwellwithepilepsy.com/2016/epilepsy-blog-relay/nov16rachelehrhardt.html) around me helps. They help so much. I am grateful that I have been able to discover what calms me down and what helps me get through seizures. My mother will normally hold my hand and sit next to my head whilst I’m lying down on the bed. She’ll talk to me and try and get my mind off of it. My dad or my little sister will be sitting on the bed, rubbing my back. They know that I need it. My little sister also loves to help me through seizures by talking to me. Anything I need, she’ll do it for me. My older sister is always strong and ready to call the ambulance if it’s needed. My brother seems to also make me laugh when he tries to talk to me and get my mind off of it. He’s a foodie, so unsurprisingly he tries to get my mind off of things by talking about food! They do all of this with fear in their hearts; seeing their strength even when they’re scared or worried for me helps me through it. I am ever so happy, though, that they no longer need to constantly do this. My family and I have all lived to see progress and better days. Mental health is always so important to keep in check. A good support system, whether it’s family or friends, will definitely help with that. As of right now, I feel independent. I know that with epilepsy I will have to be dependent on others in certain situations, but right now I’m independent and that makes me feel really good. When I need someone, I know they’ll be there. Sometimes, knowing that you [have to be dependent](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/to-my-caregiver-in-sickness-and-in-health.html) on others for your needs can be hard to come to terms with. For many years, I hated waking my mum up from her sleep when I felt like I was having a seizure. But it’s important to know that those around us want to be there for us. They want to help. They can’t do much to stop our seizures but the little they can do, such as being present with us and giving us some sort of comfort, helps them and makes them happy to know they can help. As for us epileptics, the dependency doesn’t need to be in all aspects of our life. There are many other places in our life where [we can be independent](https://livingwellwithepilepsy.com/2021/livingwell/taking-back-your-independence-without-a-drivers-license.html). I’ve learned that relying on someone to make sure we don’t accidentally hurt or injure ourselves due to uncontrollable circumstances is not an unhealthy dependency at all. #### Finding an Epilepsy Community Getting through seizures and adjusting to medication, especially during my teen years and exams were, of course, difficult but I knew that my epilepsy was not something I could allow to restrict my life. I am always careful and stay within limits in order to look after myself, but I still am able to be happy and enjoy myself. It has actually helped me to make more use of my time and my relationships, remembering to do everything wisely. I hope that others going through difficulties such as this get through it all. I know that when I was younger, if I was going through a tough period of seizures, I would have loved to read about or see how well people are doing, despite living with epilepsy. For many years, I didn’t know anyone who was epileptic so didn’t really have an understanding of what the future might hold. To be completely honest, even now I don’t but I just make sure that I am always grateful for all the good that I do have instead of what I don’t have. Reading [other people’s experiences of epilepsy](https://livingwellwithepilepsy.com/2020/epilepsy-blog-relay/finding-real-support-in-the-online-epilepsy-community.html) has also helped a lot and I truly hope this can help others too. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Grand Mal / Tonic Clonic **Tags:** myoclonic seizures, Tonic Clonic Seizures --- ### [Epilepsy Blog Relay: Disability in the workplace](https://livingwellwithepilepsy.com/life-with-epilepsy/work/disability-in-the-workplace.html) **Published:** March 9, 2019 **Author:** Rachel Ehrhardt **Excerpt:** Rachel helps us understand the Americans with Disabilities Act and how it can help you advocate for yourself in the workplace. **Content:** ## ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/10/IMG_1654-e1540829010646-252x300.jpeg "IMG_1654 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/portfolio/nov-10-rachel-ehrhardt/attachment/img_1654)***Disability in the Workplace First, like always I want to welcome those that are just reading this blog for the first time and welcome back to those that have been around a while. The topic of disability in the workplace has come up quite a few times in my group of epilepsy friends. After researching this topic for months, I have decided that the best way to tackle this important topic is to separate this into two or three different posts to do it justice (pardon the pun). This first installment I am going to explain what the Americans with Disabilities Act is and when employers can ask about your disability. ## Americans with Disabilities Act #### References: [EEOC and Epilepsy](https://www.eeoc.gov/laws/types/epilepsy.cfm) [ADA and Epilepsy](https://www.ada.gov/cguide.htm) [Disability Compendium](https://disabilitycompendium.org/sites/default/files/user-uploads/2016_AnnualReport.pdf) [ADA Amendments Act of 2008](https://en.wikipedia.org/wiki/ADA_Amendments_Act_of_2008) ## Epilepsy and Disability Before we dive into employment laws that pertain to epilepsy and disability, I think it is best that we establish what the Americans with Disabilities Act (ADA) is and the history behind it. According to the [United States Department of Justice, Civil Rights Division](https://www.ada.gov/ada_intro.htm), “Modeled after the Civil Rights Act of 1964, which prohibits discrimination on the basis of race, color, religion, sex, or national origin – and Section 504 of the Rehabilitation Act of 1973 — the ADA is an “equal opportunity” law for people with disabilities”. The ADA was passed in 1990. This was the first civil rights law that specifically addresses the needs of those with disabilities that prohibits discrimination in employment, public service, public accommodations, and telecommunications. Also, according to the US Department of Labor, “The ADA defines an individual with a covered disability as one who has a physical or mental impairment that substantially limits a major life activity, as well as those with a record of, or are regarded as having, such an impairment. Under the Americans with Disabilities Act Amendments Act (ADAAA) of 2008 (which became effective January 1, 2009), all persons with epilepsy should be considered to have a disability covered under the ADA, and therefore will be protected from employment discrimination.” --- **Related: [The ADA and Epilepsy](https://livingwellwithepilepsy.com/2018/aboutepilepsy/americans-with-disabilities-act-epilepsy.html)** --- ## Before you get the job… One of the biggest questions I’m asked is when and why can people ask about your disability. There are usually three times in your career when this question usually comes up, the first of these is prior to a person receiving a job offer. According to The US Equal Employment Opportunity Commission, a potential employer may not ask if you have epilepsy or another disability. They also may not inquire regarding the extent of a disability. The only real time that it is okay for someone to ask regarding your disability during pre-employment is if there is an assessment regarding to your skills regarding to the job in which you have applied. ## On the ADA and Epilepsy ## Now that you’ve got the job… The second time that the question of whether an employer can ask you questions regarding your disability is while you are presently employed by a company. The answer to this is a tough one on the side of the employee. According to the National Epilepsy Foundation, “An employer may make disability-related inquiries and require medical examinations only if they are “job-related and consistent with business necessity.” This means that the employer must have a reasonable belief that an employee will be unable to perform the basic functions of his or her job because of a medical condition or that the employee will pose a threat to health or safety because of a medical condition. Again, the only time that your employer needs to ask about the extent or details of your disability is if you are not able to perform your job description without accommodation or assistance. --- **Related: [When a seizure happens at work](https://livingwellwithepilepsy.com/2018/livingwell/work/when-a-seizure-happens-at-work.html)** --- ## Requesting accommodations The third time that the question of whether an employer may ask questions regarding your disability is when you are requesting an accommodation to complete your essential job duties. This is the time in which you are in a place you need assistance in the workplace. Many times, when I hear people discuss this situation, there is a negative stigma around this. There are completely varying degrees of the need for assistance. Most importantly, you must ask the question of how long you have worked for this company and if your performance in this position is truly due to the disability or being overwhelmed in the role. Also, there are situations that physically can keep you from accomplishing your job (ie; lighting such as blinking lights, a desk where you can access and utilize, and healthcare access). Check out the resources we included here and keep an eye out for more on this topic. ***This post originally ran as part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) [Share your story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://secure.gravatar.com/avatar/82d406d4460971f22d36968d14d1294a2a0c55c719c5b66a09acb2d2ad3872f2?s=300&d=mm&r=g) Rachel Ehrhardt Rachel Ehrhardt Streelman is from Houston , Texas. She has been a writer and contributor to Living Well with Epilepsy for two years. Rachel has had epilepsy since 9 months old. She comes from a family where her father, sister, and herself all have different forms of epilepsy. Rachel is married to Casey and they have a Cavapoo named Sheldon. [See Full Bio](https://livingwellwithepilepsy.com/author/rachel) [ ](https://livingwellwithepilepsy.com/author/rachel) **Categories:** Work **Tags:** ADA, Americans with Disabilities Act, disability, Epilepsy at Work --- ### [Facebook Says Epilepsy May Offend Users](https://livingwellwithepilepsy.com/life-with-epilepsy/facebook-says-epilepsy-may-offend-users.html) **Published:** September 24, 2017 **Author:** Jessica K. Smith **Excerpt:** According to Facebook's advertising policies, Epilepsy is now potentially offensive to the Facebook community. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/09/ads-not-approved-300x300.png "ads not approved – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/life-with-epilepsy/facebook-says-epilepsy-may-offend-users.html/attachment/ads-not-approved)If you have ever posted anything on Facebook and tried to reach a wide audience, you know you just have to bite the bullet and pay for advertising. But apparently Epilepsy is now potentially offensive to the Facebook community. This makes raising epilepsy awareness via the platform a bit of a challenge. Facebook has some rules and regulations advertisers need to follow. These are fair enough in most cases. For example, there can only be a certain amount of text in an image. Generally, I have found these rules inconvenient but not a real problem. But Facebook has finally take the rules and regs too far. #### It started last Spring… Last spring, I put out a call for more caregiver stories through a post on Facebook. When I tried to boost the post I was surprised to find the ad was rejected. A “boosted post” on Facebook has a wider reach that an unboosted post. I wanted to be sure plenty of caregivers knew about the opportunity to submit their story. Here is the post I had hoped to boost. It seemed innocent enough to me. [![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/04/Screen-Shot-2017-04-25-at-8.23.06-PM.png "Screen Shot 2017-04-25 at 8.23.06 PM – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/life-with-epilepsy/facebook-says-epilepsy-may-offend-users.html/attachment/screen-shot-2017-04-25-at-8-23-06-pm) #### Facebook’s thoughts on Epilepsy I know when Facebook rejects an ad you can appeal the decision. So, I went ahead and submitted an appeal to Facebook. When I have done this in the past it has resulted in a prompt and positive response. But this time I received the following note: *Hi Jessica,Thanks for writing in.* *Your ad wasn’t approved because the body/title text calls out to specific user attributes (ex: race, religion, age, sexual orientation, gender, disability or medical condition, financial status, membership in a trade union, criminal record, ethnicity, name). Such ads may offend the users and lead to high negative sentiment.* #### *Ads should not single out individuals or degrade people. We don’t accept language like “Are you fat?”, “Are you in debt?” and the like. Instead, text must present realistic and accurate information in a neutral or positive way and should not have any direct attribution to people.* ***ex: Share your epilepsy experience*** *The language of the ad should be focused on the product and not users. You can recreate your post with these guidelines in mind and try to boost it again. If you used ad creation, you can edit it in your Ads Manager.* *To learn more about our language policies please visit our Help Center.[](https://www.facebook.com/help/223106797811279/)* *Was this helpful? Let us know Have a great day.* *Thanks, Sophie Facebook Ads Team >On Tue Apr 25, 2017 16:59:20, Jessica Keenan Smith wrote: >Ad ID : 6068700010266 >Additional Information : This ad follows Facebook policies. I don’t understand why it was not approved. >* #### My Response *Sophie,* *My entire site is a resource to those living with epilepsy. It is also* *written by and founded by people living with epilepsy.* *Share your epilepsy experience is not akin to “Are you fat?” or “Are you in* *debt?”. Epilepsy is a disease state that affects more than 65 million* *people world wide.* *I appreciate your feedback. I will post an article on my site including* *your response. I look forward to hearing the community’s response.* *Best,* *Jessica* Following my note Facebook accepted my money and boosted the post. Ever since I have been careful to not include the word epilepsy in my posts. #### The Final Straw But this weekend when I put out a call for Ketogenic Diet recipes, Facebook denied all the posts I tried to boost. See the image below: [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/09/Screen-Shot-2017-09-23-at-5.00.46-PM.png "Screen Shot 2017-09-23 at 5.00.46 PM – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=16503) #### What’s Your Take? I didn’t realize that writing about a disease state would degrade people. I would love to know your thoughts on the situation. Please comment below! ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Life With Epilepsy --- ### [Epilepsy Blog Relay: How stigma from epilepsy can lead to feelings of suicide](https://livingwellwithepilepsy.com/aboutepilepsy/stigma/suicide-and-the-stigma-of-epilepsy.html) **Published:** November 8, 2022 **Author:** Elaine Reeves **Excerpt:** People with epilepsy experience the impact of stigma everyday. In many cases this can lead to a sense of vulnerability and despair. Elaine shares how she deals with those feelings. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/05/10-e1527525084983-298x300.jpg "10 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/10)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) ***Follow along!*** #### Elaine’s Story As people with epilepsy we experience stigma as part of our everyday lives. The stigma associated with [epilepsy](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/nov-18-ebr-posts/5-tips-for-dealing-with-an-epilepsy-diagnosis.html) is a well-researched and firmly established fact. However, stigma does not announce itself. Although the best response to stigma might be education, I sometimes wonder what the best means for education really is. We hear a lot about telling our stories. Storytelling is often done with words, but are there other ways to tell a story? > Elaine asks: Can words alone penetrate the silence that is stigma? #### When vulnerability turns to feelings of suicide Being stigmatized increases vulnerability to [feelings of suicide](https://www.spin.com/2018/10/lady-gaga-guardian-suicide-op-ed/). This is another well researched and firmly established fact. I am vulnerable to intermittent feelings of despair and suicide because I face the religious stigma that sees epilepsy as caused by sin. I was raised in a holiness church where disease is frequently attributed to sin. Prayers for repentance and a return to finding “the center of God’s will” are combined equally with prayers for healing from illness. The unspoken assumption in many religious belief systems is that freedom from sin and a life at the center of God’s will leads to a life of health and blessing. In holiness sermons, periods of hospitalization are often described as a time of soul searching where healing comes after the sick person identifies the sin or shortcoming that caused the illness and makes a life change that is a return to the center of God’s will and freedom from sin. #### Resources: [https://twloha.com/ ](https://twloha.com/) [https://suicidepreventionlifeline.org/ ](https://suicidepreventionlifeline.org/) #### Protecting yourself against stigma The devaluing of people with [epilepsy](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/nov-18-ebr-posts/5-tips-for-dealing-with-an-epilepsy-diagnosis.html) by religious belief systems and by the people who follow those religious belief systems has been going on for centuries. The fact is, I feel at a complete loss to find words to combat long established religious stigma. First and foremost, I no longer go to churches or form close relationships with people, including members of my family, who use religion, even well-meaning offers for healing prayer, to stigmatize me. I have learned that no matter how much I am devalued by others, the worst is for me to devalue myself. All people with epilepsy are at risk for self-devaluing. The unspoken devaluing of people with epilepsy by others is likely to influence me whether I realize it or not. #### Valuing yourself My living body story will go on even in the face of stigma unless I silence my body story by self-devaluation suicide. I’ve written this poem to remind myself that the devaluation of people with epilepsy stops with me because [I refuse to devalue myself](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/a-positive-approach-to-an-epilepsy-diagnosis.html). #### Consensual Reality Why I will not commit suicide. I will not commit suicide Because that would be the easy way out Not for me For you. My suicide will be the easy way out for you It is easy for you to decide that my voice does not count. Is one killing enough? Will I, with my own hand, make it two? Will I dispose of the body, too? For you. Why I will not commit suicide. *by Elaine M. Reeves* For more stories and more voices, visit [Living Well with Epilepsy.](https://livingwellwithepilepsy.com/epilepsy) --- #### Suicide Resources: ![author avatar](https://secure.gravatar.com/avatar/5d4261955d4ceff56cc67b1a40b7c2203bf696f43b3fd37045328526cd56ff6e?s=300&d=mm&r=g) Elaine Reeves [See Full Bio](https://livingwellwithepilepsy.com/author/ereeves) [ ](https://livingwellwithepilepsy.com/author/ereeves) **Categories:** Stigma **Tags:** mental health, Stigma, suicidal ideation, suicide --- ### [Epilepsy Blog Relay: On Epilepsy and Religion](https://livingwellwithepilepsy.com/aboutepilepsy/stigma/epilepsy-and-religion.html) **Published:** April 13, 2022 **Author:** Jessica K. Smith **Excerpt:** Here we take a look at two different perspectives on the question of epilepsy and religion. On one side faith provided strength while on the other side faith meant losing a community of loved ones. **Content:** #### ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/04/pexels-koolshooters-8512293-683x1024.jpg "pexels-koolshooters-8512293 – Living Well With Epilepsy")On Epilepsy and Religion I was recently approached by an author who published an autobiography about living with epilepsy and having brain surgery. The book by Amy Crane, “[In My Right Mind, My Life with Epilepsy](https://www.amazon.com/My-Right-Mind-Life-Epilepsy/dp/109808358X/ref=sr_1_1?crid=1CZG59TFDQT8K&keywords=in+my+right+mind+amy+crane&qid=1649801485&sprefix=in+my+right%2Caps%2C89&sr=8-1)” touches on how she knew God was leading her to higher ground through brain surgery. In Amy’s case her faith and religious community gave her strength. This story is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay). However, we have seen the other side of religion and epilepsy here on this blog. [Elaine](https://livingwellwithepilepsy.com/author/ereeves) was raised and cast out by her family and community of [Christian Fundamentalists](https://livingwellwithepilepsy.com/author/ereeves) because her epilepsy could not be cured by exorcising the demon causing her seizures. It was believed her faith was not strong enough to combat the demon and thus her epilepsy made her a threat to the community. It may be difficult for each side to see but strong faith can provide comfort and inner strength or it can become a source to break down that same inner strength and comfort. #### Amy shares an excerpt from “In My Right Mind” I had complex partial and grand mal seizures in my childhood and in my young adult years. I had many days when I would have several seizures in one day and would need to sleep after having a seizure. The seizure medications that I took never completely controlled my seizures. I had learning difficulties as a result of having epilepsy and taking up to three seizure medications at a time. My parents tried everything they could to help me gain better seizure control, but I continued to have seizures into my adulthood. After graduating from high school, I went to college to pursue a degree in education. Even though I faced challenges of having seizures while going to college, I was determined to earn a college degree. It was my junior year in college when my neurologist informed me that I could undergo medical tests to determine if I was a candidate for epilepsy brain surgery. Without hesitation, I accepted the opportunity to find out if my type of epilepsy could be cured through brain surgery. At the age of twenty-two, I found out that I was an excellent candidate for brain surgery. When I was twenty-three years old, I underwent five hours of brain surgery. I woke up knowing that I made it through surgery and with a renewed hope of having a better quality of life. I have a degree in elementary education, a master’s degree in special education, and a master’s degree in school leadership. I am a special education teacher, I drive, and I live independently. In my book, I share how epilepsy impacted my mental health, my education, and my outlook of my future. I wrote my story to share what I went through with having seizures and to give hope to those that have epilepsy and to those that have a loved one that has epilepsy. #### Elaine on when vulnerability turns to feelings of suicide Being stigmatized increases vulnerability to [feelings of suicide](https://www.spin.com/2018/10/lady-gaga-guardian-suicide-op-ed/). This is another well researched and firmly established fact. I am vulnerable to intermittent feelings of despair and suicide because I face the religious stigma that sees epilepsy as caused by sin. I was raised in a holiness church where disease is frequently attributed to sin. Prayers for repentance and a return to finding “the center of God’s will” are combined equally with prayers for healing from illness. The unspoken assumption in many religious belief systems is that freedom from sin and a life at the center of God’s will leads to a life of health and blessing. In holiness sermons, periods of hospitalization are often described as a time of soul searching where healing comes after the sick person identifies the sin or shortcoming that caused the illness and makes a life change that is a return to the center of God’s will and freedom from sin. The devaluing of people with [epilepsy](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/nov-18-ebr-posts/5-tips-for-dealing-with-an-epilepsy-diagnosis.html) by religious belief systems and by the people who follow those religious belief systems has been going on for centuries. The fact is, I feel at a complete loss to find words to combat long established religious stigma. First and foremost, I no longer go to churches or form close relationships with people, including members of my family, who use religion, even well-meaning offers for healing prayer, to stigmatize me. I have learned that no matter how much I am devalued by others, the worst is for me to devalue myself. All people with epilepsy are at risk for self-devaluing. The unspoken devaluing of people with epilepsy by others is likely to influence me whether I realize it or not. #### On being valued Whether your faith in a higher power is strong or it is not does not impact your place in the epilepsy community. You are and will always be a valued member of the epilepsy community regardless of your religion and your beliefs. Don’t miss tomorrow’s story in the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay). ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Stigma **Tags:** epilepsy and religion --- ### [Living Well Outside: 4 great reasons to exercise and tips on how to get it done](https://livingwellwithepilepsy.com/life-with-epilepsy/4-reasons-to-exercise-when-you-have-a-chronic-illness.html) **Published:** July 16, 2018 **Author:** Emily Lawrence (Nee Donoghue) **Excerpt:** Emily shares 4 reasons to exercise even when you are living with a chronic illness. She also gives us a few ideas of how to exercise safely! **Content:** It is easy to let the fear of seizures and epilepsy stop you from enjoying [exercise](https://livingwellwithepilepsy.com/2018/aboutepilepsy/side-effects/5-tips-to-keep-constipation-away.html) and [getting outdoors](https://livingwellwithepilepsy.com/category/livingwell). I LOVE exercise, but I often have the debilitating thoughts of ‘Last time I went swimming, I had a seizure’, or ‘Last time I went from a run I had a seizure’. And before I know it, I am sitting inside thinking about how nice a swim would be at that moment. Yet I just let it keep as a thought, and I don’t go and actually enjoy it. #### Why exercise [Regular exercise](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/epilepsy-blog-relay-interview-with-researcher-sarah-collard.html) can in some cases manage seizure activity. We do have to be careful which exercise we take on. For example swimming alone isn’t advised, rock climbing may not be the best idea, and running alone isn’t either. The most important thing to remember is, we should all have the opportunity to get out there and enjoy sports. Epilepsy shouldn’t stop this. (*always check with your doctor!*) Here are a few ways exercise can help when you are living with epilepsy or other chronic illnesses: #### 1. Sleep better How many of you are triggered by lack of sleep and stress? Guess what? They’re two of my main triggers too. The key to maximizing the benefits of exercise is to follow a well-designed program that you can stick with over the long term. #### 2. Manage depression and anxiety As you know, some of the conditions often associated with epilepsy are depression and anxiety. Exercising can really help these two conditions. [Regular exercise](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/epilepsy-blog-relay-interview-with-researcher-sarah-collard.html) can help you have two less things to be worried about and you will hopefully be able to manage your Epilepsy more. #### 3. Improve bone density Exercise can also improve bone density, helping to counter the bone loss that is a common side effect of many antiepileptic drugs. #### 4. Manage weight and improve immunity With the appropriate exercise, you can help yourself to maintain a healthy body weight, boost your immunity, reduce stress, sleep better and feel more energized. These are [key factors in managing your seizures](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/epilepsy-blog-relay-interview-with-researcher-sarah-collard.html). (*remember check with your doctor!)* #### Minimize the risk As a person with epilepsy, make sure you ask yourself if there is any risk involved in an activity. When I did my wing walk for charity, I sat down and had a real good think to myself. There were many risks involved in me doing it, but I made sure I put some safety measures in place therefore lowering the risks. There are many activities that carry some sort of risk, even if you don’t have epilepsy. Going to the gym using heavy equipment, skydiving, horse riding, yet people still do these activities. Other people find a way to manage the risks involved, so we can too. --- **Related:** Posts not found --- #### Go for low impact Two exercises I really enjoy are Pilates and Yoga. I do these every day. You don’t have to do running, biking or horseback riding to do sports outside-yoga and pilates are GREAT to do in your garden or at a park. There are so many benefits to pilates, and the moves of pilates look simple, but they take a lot of focus control, meaning you are thinking in the moment and forget all other worries of the day. It’s a real technique. #### Pilates and yoga for strength and flexibility You can do [Pilates](https://www.webmd.com/fitness-exercise/features/the-benefits-of-pilates) on an [exercise](https://www.webmd.com/fitness-exercise/default.htm) mat in a class or at home, using a trainer in a class or a DVD/Youtube video at home. I can’t commit to classes due to my work shifts so I work round those by doing it at home. If you go to a class, the classes are usually around 45 minutes to an hour, but I do turbo pilates at home if I have less time, or a full hour if I can spare it. You work on your mindfulness with this by focusing on the fresh air, the smells of nature and the sounds of the birds. You’ll also get stronger, by building more muscles and gaining flexibility. You may also have better posture and a better sense of well-being. Pilates is also fantastic at helping you focus on your breathing. My seizures are often triggered by hyperventilating, so pilates works with that, and because it is controlled breathing it really benefits me. #### Exercise at night If you work during the day and get home late, remember just because it is night-time it doesn’t mean that you need to stop enjoying the outdoors and go straight inside. If you’re [outside on a clear night,](https://livingwellwithepilepsy.com/2018/livingwell/living-well-outside.html) you’ll have an opportunity to see star-lit skies that are almost impossible to ever see if you live in a city or work inside. Grab yourself a mat and enjoy 10 or so minutes in your garden or somewhere safe near your home if you don’t have much of a yard. *“Log off, shut down and enjoy the outdoors”-Emily Sian Donoghue* #### How are you Living Well Outside? [Share your story](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://secure.gravatar.com/avatar/5523d28ae8bbaedc9d082d51d29393ca490379cd31464b99ab3c7d50a49362ac?s=300&d=mm&r=g) Emily Lawrence (Nee Donoghue) 25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England. Emily's Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10. Based in UK. [See Full Bio](https://livingwellwithepilepsy.com/author/emilyd) [ ](https://livingwellwithepilepsy.com/author/emilyd) **Categories:** Life With Epilepsy **Tags:** anxiety, depression, exercise, Fitness, outdoors, pilates, Yoga, yoga mat --- ### [20+ things we love to make evey day cozy in 2019](https://livingwellwithepilepsy.com/life-with-epilepsy/travel/20-things-we-love-to-make-evey-day-cozy-in-2019.html) **Published:** January 1, 2019 **Author:** Jessica K. Smith **Excerpt:** Check out our writer's list of the 20+ must haves for Living Well With Epilepsy in 2019. The team shared their favorite things to stay cozy in 2019 including everything from white boards for memory, to food services for when you can't get to the store, or a cozy blanket for when you just want to hide! **Content:** The Living Well With Epilepsy team and a few of our epilepsy influencer friends put our heads together to come up with a list of our favorite things for 2019. We want you to be comfy and cozy throughout the year. So here are a few things to make your life a little easier in the coming year. #### ![Living Well With Epilepsy Team](https://livingwellwithepilepsy.com/wp-content/uploads/2018/04/IMG_4934-e1525026845699.jpg "IMG_4934 – Living Well With Epilepsy") *Our team has recommended products they use and love. At this writing there are no affiliate links included and these products were not provided to the writer or reviewer.* --- [![Jessica K Smith](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266-150x150.jpg "IMG_3837 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) #### Jessica’s favorite things *Founder and Editor-in-Chief of Living Well With Epilepsy* --- ### Conquer Wedge Bootie [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/12/427842_001_ss_01-640x480.jpg "427842_001_ss_01 – Living Well With Epilepsy")](https://www.dsw.com/en/us/product/dr.-scholls-conquer-wedge-bootie/427842?activeColor=020)I can walk for miles of conference halls in these adorable little wedges And I get the kudos for still wearing heels at the end of the day ### New Living Well dark tee [![Living Well With Epilepsy tee dark](https://rlv.zcache.com/living_well_with_epilepsy_tee_dark-rdb1706ab954a4c49a19d3ffd4091534a_jg9oj_325.jpg?bg=0xffffff)](https://www.zazzle.com/living_well_with_epilepsy_tee_dark-235311715629746190?rf=238448480061865297)This is our brand new design. The period at the end is a little brain and on the back is the logo. These are a fun comfy updated twist on our previous design. ### Cozy blanket scarf [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/12/Screen-Shot-2018-12-13-at-9.25.08-AM-e1544711409756.png "Screen Shot 2018-12-13 at 9.25.08 AM – Living Well With Epilepsy")](https://www.amazon.com/Bess-Bridal-Womens-Blanket-Oversized/dp/B019DE22WC/ref=sr_1_1_sspa?ie=UTF8&qid=1544710961&sr=8-1-spons&keywords=soft+blanket+scarf&psc=1)This inexpensive scarf is so soft it looks like a luxury item When the weather gets chilly I wear it everywhere ### Starbucks coffee [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/01/sbk-coffee-640x640.png "sbk coffee – Living Well With Epilepsy")](https://www.starbucks.com/)Starbucks coffee is a must for me Not fancy just coffee with a ton of milk [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/03/IMG_20141126_134530-150x150.jpg "IMG_20141126_134530 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/author/leila-zorzie) #### Leila’s favorite things *Assistant Editor and Contributing Writer for Living Well With Epilepsy* --- ### More Love Letters [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/12/mll.png "mll – Living Well With Epilepsy")](http://www.moreloveletters.com/)The project More Love Letters has been one of my favorite things for a few years now These ladies believe that letters can give encouragement to others Anyone and everyone can participate ### Scented candles [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/12/BBW-Candle-e1546276635904.jpg "BBW Candle – Living Well With Epilepsy")](http://www.bathandbodyworks.com/p/marshmallow-fireside-3-wick-candle-023976835.html?cgid=3-wick-candles-promotion#start=9)Candles are one of the best ways I relax I like to use Bath and Body Works or Yankee Candle but just about any will do ### Dry Erase Calendar [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/12/dry-erase-calendar-300x300.jpg "dry erase calendar – Living Well With Epilepsy")](https://www.amazon.com/Calendar-Set-Large-Magnetic-Organizer-Refrigerator-Best/dp/B01MRHVW56/ref=sr_1_4?ie=UTF8&qid=1544623340&sr=8-4&keywords=whiteboard+calendar+for+fridge)I love the calendar for my fridge It keeps me organized and reminds me of what the schedule is It helps keep our schedules in sync and we dont constantly have to ask each other what is going on ### Microplush bed blanket [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/12/blanket-640x640.jpg "blanket – Living Well With Epilepsy")](https://www.target.com/p/microplush-bed-blanket-threshold-153/-/A-50950586?preselect=50928593#lnk=sametab)Get cozy and warm with this Microplush Blanket by Threshold Its made of machine washable material so its easy to clean and maintain [![](https://livingwellwithepilepsy.com/wp-content/uploads/2015/05/Whitney-Petit-150x150.jpg "Whitney Petit – Living Well With Epilepsy")](http://www.cf-epilepsy.com/) #### Whitney’s favorite things *Contributing Writer and Resident Tech Visionary for Living Well With Epilepsy* --- ### Pink Mineral Soak [![Dr Teal's® Restore & Replenish Pure Epsom Salt & Essential Oils Pink Himalayan Mineral Soak - 48oz - image 1 of 1](https://target.scene7.com/is/image/Target/GUEST_71e8fbbd-9496-4d93-b42c-d1746818be64?wid=1400)](https://www.target.com/p/dr-teal-s-174-restore-replenish-pure-epsom-salt-essential-oils-pink-himalayan-mineral-soak-48oz/-/A-51077965)Ease away sore muscles with this pink mineral soak. ### Instacart food shopping [![](https://d2guulkeunn7d8.cloudfront.net/assets/homepage/img-bag-53165e0029b8b26faa43589a249af5fc390abf323a599a42764b7eb6854e6f02.jpg)](https://www.instacart.com/)Instacart makes my life so much easier! They do all of the shopping for me and drop it off within 2 hours! ### Any.do productivity app [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/12/Screen-Shot-2018-12-31-at-1.01.43-PM.png "Screen Shot 2018-12-31 at 1.01.43 PM – Living Well With Epilepsy")](https://www.any.do/)Increase your productivity no matter what technology you use with the Anydo app ![](https://ssl.gstatic.com/ui/v1/icons/mail/images/cleardot.gif) ### Que Bella Mask [![Que Bella Professional Moisturizing Gel Eye Masks - 3 pairs - image 1 of 3](https://target.scene7.com/is/image/Target/GUEST_a95393d5-775c-4da9-b51e-98a84a47d7d4?wid=1400)](https://www.target.com/p/que-bella-professional-moisturizing-gel-eye-masks-3-pairs/-/A-26393144)These eye gel masks reduce puffiness without irritation. ### Instant Pot cooking [![](https://images-na.ssl-images-amazon.com/images/I/71XFSS0LuAL._SL1280_.jpg)](https://www.amazon.com/Instant-Pot-Multi-Use-Programmable-Pressure/dp/B00FLYWNYQ)With the instant pot you can set the recipe and let it do the cooking for you! ### Passion planner if you like paper [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/12/passionplanner-e1546279079204-640x640.jpg "passionplanner – Living Well With Epilepsy")](https://passionplanner.com/2019-dated-elite-black/)Productive planning goes old school This diary and planner allows me to get my thoughts together for future and current projects [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/02/IMG_0509-150x150.jpg "IMG_0509 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/author/rachel) #### Rachel’s favorite things *Contributing Writer for Living Well With Epilepsy* --- ### Body wash with epsom salt [![Dr Teal's Pure Epsom Salt Body Wash Soother & Moisturize With Lavender 24 Ounce](https://images-na.ssl-images-amazon.com/images/I/61P%2B3EiKVKL._SX522_.jpg)](https://www.amazon.com/Dr-Teals-Soother-Moisturize-Lavender/dp/B00BQYF220)Wash away the aching muscles with the scent of lavender. ![](https://ssl.gstatic.com/ui/v1/icons/mail/images/cleardot.gif) ### Hydro Boost Hydrogel Mask [![Neutrogena Moisturizing Hydro Boost Hydrating Face Mask - 1oz - image 1 of 8](https://target.scene7.com/is/image/Target/GUEST_2d1326c7-cefe-46f0-995f-f030d5da7eba?wid=1400)](https://www.target.com/p/neutrogena-moisturizing-hydro-boost-hydrating-face-mask-1oz/-/A-52593023)A little moisture boost for my face from Neutrogena. This mask won’t irritate my dry and sensitive skin. ### Intensive hand balm [![L'Occitane Nourishing & Intensive Hand Balm With 25% Organic Shea Butter, 5.2 oz.](https://images-na.ssl-images-amazon.com/images/I/71B5CgsKmZL._SX522_.jpg)](https://www.amazon.com/LOccitane-Nourishing-Intensive-Organic-Butter/dp/B01N5J3QJW)This hand balm keeps my very dry skin moisturized without any greasy residue. ### Sleepytime Tea [![Celestial Seasonings Herbal Sleepytime Tea - 40ct - image 1 of 1](https://target.scene7.com/is/image/Target/GUEST_da7d9e17-72cd-4723-8cc6-70445acf2181?wid=1400)](https://www.target.com/s?searchTerm=Celestial+seasonings+sleepy+time+tea)For those nights when it is difficult to go to sleep, I use sleepytime tea. The camomile is delicious and relaxes me enough to get a good night sleep. [![Epilepsy skydive](https://livingwellwithepilepsy.com/wp-content/uploads/2017/07/LWWE_skydive-013cropped-150x150.jpg "LWWE_skydive-013cropped – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/author/maureen-knorr) #### Maureen’s favorite things *Contributing Writer and Resident Travel Guru for Living Well With Epilepsy* --- ### Five minute journal [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/12/cover-image-e1546356135798.jpg "cover image – Living Well With Epilepsy")](https://www.amazon.com/Five-Minute-Journal-Happier-Minutes/dp/0991846206/ref=sr_1_2?ie=UTF8&qid=1545515977&sr=8-2&keywords=five+minutes+journal)The Five minute Journal is a great way to remind me of what Im grateful for and prioritize my day ![](https://ssl.gstatic.com/ui/v1/icons/mail/images/cleardot.gif) ### Nalgene water bottle [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/12/51tm90XLFzL._SL1000_-640x640.jpg "51tm90XLFzL._SL1000_ – Living Well With Epilepsy")](https://www.amazon.com/dp/B07BMHG613/ref=twister_B0047GOONM?_encoding=UTF8&psc=1)I use my Nalgene to keep potable water with me wherever I am in the world It is so important to stay hydrated with all my meds ### Lululemon Yoga Pants [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/01/llpant-640x640.jpg "llpant – Living Well With Epilepsy")](https://shop.lululemon.com/p/women-pants/Groove-Pant-Flare-32/_/prod9080139?color=31382)My Lululemon yoga pants are must haves when I travel They are as comfortable as they are cute ### High Sierra backpack [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/12/IMG_7796-640x640.jpg "IMG_7796 – Living Well With Epilepsy")](https://goo.gl/forms/N2NVBIYCMweNncfR2)I use the LWWE High Sierra backpack almost everyday From being a diaper bag to a suitcase it goes everywhere with me **Note** **[These were custom made as a gift for the LWWE team If you love it click here to let us know Well make more for purchase](https://goo.gl/forms/N2NVBIYCMweNncfR2)** ["Share ]("https://livingwellwithepilepsy.com/share-your-epilepsy-experience") ["Join ]("https://docs.google.com/forms/d/e/1FAIpQLSekbRSJXCi4vd7Us-5qzGTIPrnCAyr5D0zKXVukqNpSAajC_A/viewform") ["Work ]("https://livingwellwithepilepsy.com/about-us/founder-jessica-keenan-smith") ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Travel **Tags:** living well, must haves --- ### [Epilepsy Blog Relay: Caregiver Fatigue](https://livingwellwithepilepsy.com/life-with-epilepsy/fitness/caregiver-fatigue.html) **Published:** March 27, 2019 **Author:** Leila Shields **Excerpt:** Sometimes it's hard to practice self-care of yourself if you're busy as caregiver. Leila shares with us why it's important to avoid caregiver fatigue. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/02/20150821_144625-e1553344165980-288x300.jpg "20150821_144625 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=19924)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) ***which will run from March 1 through March 31. Follow along!*** We all have someone who cares for us a great deal. For those of us with Epilepsy, or any chronic condition, there’s always a person or two who have extra responsibilities. Even if we are independent and can manage our epilepsy, there are those family and friends who look out for us daily and notice any changes. I certainly do this for my family and friends. Sometimes it is very tiring. I never really thought much about the concept of [caregiver fatigue](https://my.clevelandclinic.org/health/diseases/9225-caregiving-recognizing-burnout) until I became a therapist. I enjoy what I do and love caring for others. If I’m honest, though, it can be exhausting. For me, that took a long time to admit. In my caregiver role, I always want to seem strong in my mind, body, and emotions. That’s not realistic. We all have times where we’re strong and times when we need extra support. I was almost 2 years into my job before I finally could admit to myself that I wasn’t well. I gave so much of myself to everyone else (professionally and personally) and I was running on empty. I wanted to keep pushing through–I’m pretty stubborn like that. I was exhausted (more so than usual). I had no energy or desire to do anything other than lay on the couch or sleep. I cried a lot and my headaches increased. I knew I was neglecting myself but I felt extreme anxiety about taking any time away from the care I gave to others. Ultimately, my entire life suffered and I had to take a step back. #### How I use self-care For me, it meant giving myself permission to take Saturday mornings and watch a little more TV than normal. It meant extra long, hot showers to relax. I spent less time on social media and left my phone at home more often. I spent more time writing with a nice smelling candle right next to me. I started doing yoga and let myself be comfortable with letting a dish or two go unwashed for an evening. It took some support from others to get into a routine of relaxing…weird, right? I needed people reminding me to slow down. I learned that it is okay to take that step back. It doesn’t mean I care any less or I don’t have the same drive to help others. I wasn’t ignoring others and I wasn’t undermining anyone else’s needs. I was giving myself rest and using self-care, something caregivers don’t typically think about. --- **Related: [Self-care tips to try](https://livingwellwithepilepsy.com/2018/aboutus-lwwe/emilys-perspective/self-care-tips-to-try.html)** --- #### Signs of caregiver fatigue Don’t be afraid to admit you have some caregiver fatigue. It just means you have to take some time for self-care. It will be okay. The world will not fall apart when you take a nap or spend a couple extra minutes in the shower. As hard as it might be, loosen some of your control and delegate tasks to others. Ask someone else to fold the laundry and sweep the floor. Remember, there are people who want to support you! Make yourself aware of [signs of caregiver fatigue](https://www.vitas.com/resources/caregiving/signs-of-caregiver-burnout) and take a moment each day to notice what you’re feeling. Once you care for yourself, you are able to care more for others. --- ***NEXT UP:*** Be sure to check out the next post by Leah at [livingwellwithepilepsy.com ](http://livingwellwithepilepsy.com)for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay posts](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) you may have missed. [Share your story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://secure.gravatar.com/avatar/4cebf381fbce646cb0dbabef2348282b941c67524a3f03f08d6e328fa6c976cb?s=300&d=mm&r=g) Leila Shields Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania. [See Full Bio](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/leila.zorzie) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://lzorzie) **Categories:** Fitness --- ### [Managing stress with yoga during the pandemic can help with seizure control](https://livingwellwithepilepsy.com/life-with-epilepsy/fitness/yoga-and-seizure-control.html) **Published:** November 8, 2020 **Author:** Guest Contributor **Excerpt:** Kenny was surprised to find that yoga helps him manage stress and keeps him active. He also finds yoga helps him to be productive and provides restful sleep. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/pexels-cottonbro-4325484-1024x683.jpg "pexels-cottonbro-4325484 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/pexels-cottonbro-4325484.jpg) #### Kenny’s Story During the [long quarantine](https://www.cdc.gov/coronavirus/2019-ncov/index.html) that we have all experienced, I find that it comes with a lot of stress. During this time, I have tried many ways to alleviate this stress and anxiety as it may induce small absence seizures. I find that when I calm my mind and take the time to rest and eat well my brain feels less foggy and more productive. **RELATED: [Neurologic Manifestations of COVID-19](https://jamanetwork.com/journals/jamaneurology/fullarticle/2764549)** #### Yoga for Stress I am on medication, but I find there are days where it may be hard to focus. Whether this is due to my epilepsy or not, I am not completely sure, but I know that taking care of my brain is a necessary activity. I have tried many different workout routines and all of them seemed fairly boring and did not create relaxation for me after I did them. They helped me sleep well, which is, of course, important for our epilepsy but it wasn’t fulfilling. I did, however, at the beginning of the [pandemic](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7396129/) start to take Yoga classes virtually. #### Intentionally incorporating yoga I truly believe that yoga has been the best thing for me. It helps with anxiety and keeps me active. It also relaxes me enough that I find my day to be productive and it induces a night of restful sleep. Now that I am back in college this fall and have a hectic schedule, I haven’t been able to enjoy yoga as much, but I plan on getting back into it closer to Thanksgiving and during my winter break. I have even actively made my schedule for my next and last semester so that I can wake up and start my day with a stress-relieving and fun yoga session. If you have not tried this type of exercise, I highly recommend yoga as it encompasses all the important needs that our brains have when dealing with epilepsy. I’ll finish by saying [Kaylie Daniels](https://www.youtube.com/user/kayliedaniels) on YouTube has great classes that are relaxing and challenging! I hope everyone tries it out to see if it helps with your brain productivity and anxiety relief. #### Resources ***→**Note: these are just suggestions, we don’t receive anything if you try them.* ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Fitness --- ### [Running2Live: It's really stinking cold](https://livingwellwithepilepsy.com/life-with-epilepsy/fitness/running2live-toocold.html) **Published:** January 29, 2014 **Author:** Jessica K. Smith **Content:** Okay, I have to be honest, I haven’t been running these past few weeks. But I have to say it has been really stinkin’ cold. So I thought I would share I few pics I’ve taken lately.[![Snow angels](http://livingwellwithepilepsy.com/wp-content/uploads/2014/01/IMG_3696-1024x7641.jpg "Snow angels – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/01/IMG_3696-1024x7641.jpg) ### I’ve made a few snow angels. ### [![IMG_3692](http://livingwellwithepilepsy.com/wp-content/uploads/2014/01/IMG_3692-e1390962678100.jpg "IMG_3692 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/01/IMG_3692-e1390962678100.jpg) I’ve taken Puppy for a few long walks. [![IMG_3536](http://livingwellwithepilepsy.com/wp-content/uploads/2014/01/IMG_3536-1024x764.jpg "IMG_3536 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/01/IMG_3536-e1390965200290.jpg) ### I’ve taken a few pretty pictures. ### Next up: Zumba #### Since it is still cold, I’m going with a friend to a Zumba class. We’ll see how it goes. [![Pic provided by dumpaday.com](http://livingwellwithepilepsy.com/wp-content/uploads/2014/01/funny-zumba-pictures.jpg "funny-zumba-pictures – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/01/funny-zumba-pictures.jpg)Pic provided by dumpadaycom#### What have you been doing to stay active this winter? Clearly I could use a few ideas. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Fitness **Tags:** running --- ### [Dan's Story: Running with seizures and not even know it](https://livingwellwithepilepsy.com/life-with-epilepsy/fitness/running-with-seizures.html) **Published:** April 26, 2014 **Author:** Guest Contributor **Excerpt:** Knee tendinitis, ankles that sprain easily ... most marathon runners are nagged by a particular body part that is prone to injury. My nag is my head. I have epilepsy that, for whatever reason, tends to be provoked by running. I’ll be in the middle of a run, cruising along, feeling great, and – bam! – suddenly have a seizure. Bummer when you’re trying to set a personal record. **Content:** ## [![Finish line](http://livingwellwithepilepsy.com/wp-content/uploads/2014/04/Finish-line-199x300.jpg "Finish line – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/04/Finish-line.jpg)Dan’s personal experience running with seizures. *Dan’s [personal epilepsy story was submitted](http://livingwellwithepilepsy.com/share-your-epilepsy-experience) to Living Well With Epilepsy to share his own experience.* Knee tendinitis, ankles that sprain easily … most marathon runners are nagged by a particular body part that is prone to injury. My nag is my head. I have epilepsy that, for whatever reason, tends to be provoked by running. I’ll be in the middle of a run, cruising along, feeling great, and – bam! – suddenly have a seizure. Bummer when you’re trying to set a personal record. The mechanical act of running probably isn’t the culprit, but some byproduct of it (electrolyte imbalance?) irritates my neurons. The seizure starts as a déjà vu sensation that lasts 5 seconds, and then my brain checks out entirely for 1-2 minutes. I can fool you during those 1-2 minutes because I look conscious and normal … until you try to talk to me. Then I stare blankly like a dog listening to a physics lecture. ## It’s funny what you forget Remarkably, I blew off these seizures for a decade, 2003-2013, before I realized how severe they were. I spent a decade thinking they were a minor nuisance at most. I blew them off because I was only aware of the 5-second part. I thought these seizures caused me to space out for 5 seconds and nothing more. They seemed entirely different from seizures that I had as a child, when I had 200-300 complex partial seizures that caused me to lose consciousness completely. But it turns out the only difference is what my brain remembers. Last year, eyewitnesses gave a play-by-play description of my altered behavior during a seizure, and it became apparent that my seizures hadn’t changed since childhood except now I’m unaware of being unconscious. I witnessed this for myself when I was hospitalized last October, as hospital videos showed seizures that I thought lasted 5 seconds but actually lasted several minutes. It’s a little creepy watching a video of yourself having a seizure that you don’t remember. Honestly, it took 3 months for the shock of it all to settle in. Prior to last year, I was aware of these 5-second seizures that occurred during runs, but I still viewed epilepsy as a thing of the past because I hadn’t had a “real” seizure (i.e., lost consciousness) since 1997, as far as I knew. Then, after the shock had settled, I started training for my next marathon. ## Running give me a sense of empowerment I love running, and I’m surprised people think I would give it up because of epilepsy. Ironically, I’ve always joked that “your brain needs to be a little screwed up to run a marathon.” Marathons come with a lot of blood, sweat, and lost toenails, and to endure those you need a body of steel or a twisted mind. I have the latter because I’m a masochist who enjoys pushing my body to the edge. I also run because I don’t want to let epilepsy interfere with activities that I love. Anyone with a chronic health condition can relate to that sentiment. Outsiders often think it’s crazy for someone with Condition X to engage in sports or other hobbies that are “too risky,” but it’s not crazy when it’s part of your day-to-day life. To me, seizures are no different from a tight hamstring; it’s a physical hurdle that might weaken my performance but doesn’t preclude my performance. Every athlete faces some hurdle, and epilepsy is simply the card that I drew. There are slight risks when I go running, but if I calculate the risks versus benefits, it’s not even close. Running brings a great sense of empowerment. Completing a marathon makes me feel like I can accomplish anything. A few cranky neurons and a couple minutes of memory loss is a small price to pay for that feeling. My 8th marathon will be on May 4, 2014, in Vancouver, Canada, where I also ran my 7th marathon in 2013. I ran last year’s marathon when I still thought epilepsy was in my past. I’m returning to run it again because Vancouver is a phenomenally beautiful city and to symbolize the fact that – as different as my life feels this time – the things that matter to me are still the same. **What are your thoughts on Dan’s experience? Leave a comment** **below.** ## [Share your own personal experience](http://livingwellwithepilepsy.com/share-your-epilepsy-experience "Share your epilepsy experience") ## [Read other personal experiences](http://livingwellwithepilepsy.com/personal-stories "Personal Stories") ## [Check out “SUDEP Risk Factors and My Wakeup Call”](http://livingwellwithepilepsy.com/2013/12/latest-update-sudep.html) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Fitness **Tags:** amnesia, marathons, running --- ### [Epilepsy Blog Relay: 5 Things You Need to Know About Running With Epilepsy](https://livingwellwithepilepsy.com/life-with-epilepsy/fitness/running-with-epilepsy.html) **Published:** November 30, 2019 **Author:** Jewel Gibson **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/06/7DDE4B83-CF87-4837-AD59-8CB3202200C8-1024x683.jpeg "7DDE4B83-CF87-4837-AD59-8CB3202200C8 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/um_user_photos/jewel-2/attachment/7dde4b83-cf87-4837-ad59-8cb3202200c8)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** #### Jewel’s Story Jewel is a Brooklynite who is married to her college sweetheart. She is the mother of two handsome boys who keep her very busy. Jewel is always moving but she is content knowing that she’s striving for balance and not perfection. She has decided to share her story as a millennial woman learning to navigate being a wife, mother and career driven woman living with a seizure disorder. #### Excerpt Last year, I participated in The United Airlines Half Marathon as part of The Epilepsy Foundation of Metropolitan New York’s team. Excited about participating in a cause that is very dear to my heart and being a part of something bigger than myself I signed up immediately. After the adrenaline rush subsided and I was thinking with the full function of all my brain cells, it dawned on me. I haven’t been to the gym in years and I haven’t run since the track team in high school. My mind began to race and then the most concerning thought entered my head … Automatically, I began to talk myself out of running. I mean, this was a HALF MARATHON!! Not just 1, 2 or 5 miles but 13.5 miles of my legs and feet pressing against the concrete jungle of New York City for 2 to 3 hours. I had no clue if I could mentally and physically handle participating in the marathon. I didn’t consider how my seizures might effect my performance, energy or if I would have a seizure while running. [READ MORE](http://lifesajewel.com/5-things-you-need-to-know/) --- **NEXT UP:** Be sure to check out the next post tomorrow at . ![author avatar](https://secure.gravatar.com/avatar/c1aba6d0d67a384b767cb68f59c824d135de8a13aaafee6f345a2f92f10de560?s=300&d=mm&r=g) Jewel Gibson Jewel Gibson, fondly known as "Life's a Jewel," is an epilepsy advocate, an educator, avid reader, plant lover, city girl and all around great momma and wife. [See Full Bio](https://livingwellwithepilepsy.com/author/jgib) [ ](https://livingwellwithepilepsy.com/author/jgib) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/lifesajewel) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://www.twitter.com/lifesajewel_) **Categories:** Fitness **Tags:** running --- ### [Epilepsy Blog Relay: David on IEPs, 504 plans and the need for epilepsy awareness in education](https://livingwellwithepilepsy.com/life-with-epilepsy/school/ieps-504-plans-and-the-need-for-epilepsy-awareness-in-education.html) **Published:** June 22, 2018 **Author:** Guest Contributor **Excerpt:** When reviewing David's son's IEP, and earlier 504 plans the need for epilepsy awareness in education became painfully clear to this family. **Content:** **[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/06/IMG_6336-e1529673013800-249x300.jpg "IMG_6336 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/aboutepilepsy/special-education/ieps-504-plans-and-the-need-for-epilepsy-awareness-in-education.html/attachment/img_6336)This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from June 1 to June 30, 2018. Follow along!** #### Epilepsy Dad [Epilepsy Dad](http://www.epilepsydad.com/) provides me with an outlet for the thoughts and emotions that I imagine are common for parents of epileptic kids or parents of children with [any disability](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/jun-18-ebr-posts/building-supportive-relationships-within-the-special-needs-community.html). I wanted to share my experiences because I’m hoping my words will help other people going through the same thing so they know that they are not alone. #### An excerpt from David’s Post: We were reviewing my son’s IEP that had just been approved. After two years of providing our own DIY education for our son under a makeshift 504 plan, we hired a lawyer to finally get my son a formalized education plan and the protection that it affords him. It was clear as we reviewed the supporting documentation that we needed that protection because the system is not set up for children like him. It was even more clear as we reviewed his test results that they didn’t really know my son. *“When the special education teacher said that she had other kids with epilepsy, I cringed. “I had another kid with epilepsy” is like saying I’ve seen one shade of blue. The spectrum of what epilepsy is to a person is as broad as the hues and tones that make up every color imaginable.”* Every time a new person comes into our lives, it is an opportunity to help them understand my son. It’s an opportunity to help them understand epilepsy from the perspective of a [child](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/jun-18-ebr-posts/epilepsy-blog-relay-one-story-of-a-hard-to-recognize-illness-in-kids.html) and a family living it every day. [READ MORE](http://www.epilepsydad.com/) --- **NEXT UP:** Be sure to check out the next post by Clair at . **TWITTER CHAT:** Save the date for the #LivingWellChat on June 30 at 7PM ET. [![epilepsy blog relay](https://livingwellwithepilepsy.com/wp-content/uploads/2018/05/june-2018-social-EBR1-150x150.png "june 2018 social EBR(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-participants/attachment/june-2018-social-ebr1)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our [generous sponsors and partners](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-sponsors-and-partners)! [Participate as a November Blogger ](http://bit.ly/Nov18EBRForm) [Become a November Sponsor ](http://bit.ly/1819EBRMk) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** School **Tags:** 504 plan, epilepsy education, iep, special education --- ### [Kids with epilepsy at higher risk during flu season](https://livingwellwithepilepsy.com/advocacy-awareness/epilepsyandflu2012.html) **Published:** August 29, 2012 **Author:** Jessica K. Smith **Content:** [![](http://livingwellwithepilepsy.com/wp-content/uploads/blogger/-iBFYDz00Yvc/TIJZu-rhwZI/AAAAAAAAAHY/UfPLIRyQXPg/s200/3D_Influenza_transparent_no_key_full_med.gif)](http://livingwellwithepilepsy.com/wp-content/uploads/blogger/-iBFYDz00Yvc/TIJZu-rhwZI/AAAAAAAAAHY/UfPLIRyQXPg/s1600/3D_Influenza_transparent_no_key_full_med.gif)3D image of Influenza VirusThe CDC is currently featuring information on how children with neurologic disorders are at higher risk of death from flu. A study on the topic was recently published in *Pediatrics*, “[Neurologic Disorders among Pediatric Deaths Associated with the 2009 Pandemic Influenza, 2012](http://pediatrics.aappublications.org/content/early/2012/08/24/peds.2011-3343).” The Buzz *CBS*, the *AP*, *U.S. News and World Report*, and other outlets across the country have picked up the story so don’t be surprised if you hear about it on the news. These stories give a brief snippet of the connection between epilepsy and flu. [For a full picture, I encourage you to read the CDC’s feature on how flu impacts those living with epilepsy](http://www.cdc.gov/NCBDDD/features/flu-neurological-disorders.html) [![](http://livingwellwithepilepsy.com/wp-content/uploads/blogger/-_svnJUhVKjk/SrKXO3zfuDI/AAAAAAAAAC4/5M9HfHkiZwk/s200/B00526_H1N1_flu_med.jpg)](http://livingwellwithepilepsy.com/wp-content/uploads/blogger/-_svnJUhVKjk/SrKXO3zfuDI/AAAAAAAAAC4/5M9HfHkiZwk/s1600/B00526_H1N1_flu_med.jpg)Image of the H1N1 influenza virus taken in the [CDC Influenza Laboratory](http://cdc.gov/h1n1flu/images.htm).More If you want a little back-story, you are also welcome to visit my posts on flu and epilepsy from previous years: [Epilepsy and Flu 2009](http://jessicaksmith.blogspot.com/2009/09/epilepsy-and-h1n1.html) [Epilepsy and Flu 2010](http://jessicaksmith.blogspot.com/2010/09/epilepsy-and-h1n1-2010.html) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Advocacy and Awareness **Tags:** flu --- ### [Leila's Ideas: New Jumo Health Book Release](https://livingwellwithepilepsy.com/advocacy-awareness/new-medikidz-book-release.html) **Published:** April 27, 2016 **Author:** Leila Shields **Excerpt:** "Medikidz Explain Playing Sports with Epilepsy," the newest comic book from Eisai, was released on April 16 at the 2016 National Walk for Epilepsy. **Content:** ![Hannah, signing a "Medikidz Explain Playing Sports with Epilepsy" book!](http://livingwellwithepilepsy.com/wp-content/uploads/2016/04/Hannah-Book-Signing-300x200.jpg "Hannah Book Signing – Living Well With Epilepsy")Hannah signing a Medikidz Explain Playing Sports with Epilepsy bookOn April 16, thousands of individuals with epilepsy flocked to Washington D.C. for the National Epilepsy Walk. On that day, “Medikidz Explain Playing Sports with Epilepsy,” the newest installment of the “Medikidz Explain Epilepsy” comic book series launched into the hands and hearts of those living with a diagnosis. This book about perseverance features Chanda Gunn, an Olympic Medalist, and Hannah, a young athlete, both of whom must overcome obstacles to play the sport they enjoy, hockey. Hannah worries she may have to quit playing hockey due to her epilepsy. Through a trip back in time, Hannah is encouraged to persevere when she witnesses Chanda playing the same sport she adores. #### Medikidz Series The “Medikidz Explain Epilepsy” series was launched in December of 2013 with the hope to increase education and awareness about Epilepsy. After the initial book (titled the same as the series), Medikidz Explain Seizure Assistance Dogs” and “Medikidz Explain Living with Epilepsy” were also published. These books provide knowledge to those with and without epilepsy as well as advocating for and inspiring those living with epilepsy. They are published by Eisai Inc. #### Get your own copy To order your free copy of “Medikidz Explain Playing Sports with Epilepsy,” and to learn more about the other comic books in the series, visit [jumohealth.com](https://www.jumohealth.com/). ![author avatar](https://secure.gravatar.com/avatar/4cebf381fbce646cb0dbabef2348282b941c67524a3f03f08d6e328fa6c976cb?s=300&d=mm&r=g) Leila Shields Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania. [See Full Bio](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/leila.zorzie) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://lzorzie) **Categories:** Advocacy and Awareness **Tags:** Comic Books, epilepsy stigma, Leila's Ideas, Living Well With Epilepsy, medikidz --- ### [Lisa's Story: Pediatric Epilepsy, It's a Process](https://livingwellwithepilepsy.com/aboutepilepsy/seizure-types-syndromes/rare-epilepsy/lisas-story-pediatric-epilepsy-its-a-process.html) **Published:** December 20, 2016 **Author:** Guest Contributor **Excerpt:** Lisa's story is a look into what it took to diagnose her daughter's pediatric epilepsy. She reminds us, "Take a deep breath, and trust your gut". **Content:** [![Emily_Lisa's Story](http://livingwellwithepilepsy.com/wp-content/uploads/2016/09/IMG_3819-196x300.jpg "Emily_Lisa's Story – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2016/personal-epilepsy-stories/lisas-story-pediatric-epilepsy-its-a-process.html/attachment/img_3819)*This [personal story](http://livingwellwithepilepsy.com/share-your-epilepsy-experience) was submitted by Lisa, about her daughter Emily. I hope you enjoy learning about their experiences.* #### Lisa’s Story My story is about our 12 year old daughter, Emily. Since she was about three years old, she blinked when outdoors. About once each year, I would crusade to search for answers seeking out a specialist to try and come up with a diagnoses and a treatment. Emily could move and speak through them; the neurologist we saw at the time named it a motor tic. We sought psychologists and psychiatrists who suggested habit reversal therapy. The ophthalmologist stated that she blinked to attract attention. The next ophthalmologist suggested a nerve response to ptosis and prescribed allergenic eye drops or offered Botox as a remedy. By the time she turned 10 years old, the social and academic response to her “motor tics” became more pronounced. Emily started having trouble remembering lessons, forgetting to turn in homework or forgetting the homework all together. I observed other peers or younger children starring at her. It broke my heart when she broke down in tears one afternoon when she said a young boy was looking at her funny and she felt “socially awkward.” I worked with her to come up with a response, “I have an eye-blinking motor tic that causes me to blink in the sun and I can’t help it. “ For the academic challenges, we took her to be evaluated by a psychiatrist and paid several thousand dollars for what resulted in an ADHD diagnoses and consequent visits to a therapist to come up with tools to manage– manage her school work, accept that she needed to develop tools to help her remember, handle her resentment towards her parents for reminding (aka nagging) her to do everything, cope with a younger sister for being more athletic, more academic, more socially acceptable, and basically manage everything that faces a pre-teen. Mind you, Emily is smart. She can read a 1000 page book in one sitting. She can recall everything there is to know about Greek mythology. She has 42 Skylander characters that she can name without looking. Emily is also a talented artist. She has been on a swim team for over five years. We felt if we could inspire her with a different school that offered better teachers, more creative lesson plans and means to learn and more art, she would thrive. #### The Process At 11, the challenges from the new school increased, kids became a little cooler and she felt more awkward and alone. Thank goodness she had books. We finally saw another pediatric neurologist and insisted on an MRI and sleep-deprived EEG. They both came back abnormal and so Emily underwent a 48 hour in-patient EEG. These tests confirmed the eye-blinking were myoclonic seizures—[Jeavons Syndrome](http://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=EN&Expert=139431). In lay terms, these [myoclonic seizures](http://livingwellwithepilepsy.com/2015/emilys-perspective/new-to-epileptic-seizures.html) were in direct response to sunlight. We started dose escalating with lamictal. Three months later, Emily experienced her first tonic clonic seizure, in English class, transported from school by ambulance to emergency. The school handled the situation the best I could have asked for. But Emily still felt humiliated. We increased her meds, and a few months later, she had a second [tonic clonic](http://livingwellwithepilepsy.com/2016/blog-relay/nov16rachelehrhardt.html) seizure at school, and a few significant absence seizures that impacted several hours of memory and caused disorientation. We added an anticonvulsant medication to the cocktail despite its side effects for moodiness. We paid $1000 for Zeiss blue lenses and frames that did not help. We tried wide-brimmed hats, a fashion statement that every 11 year-old girl wants to sport, and it did not help. Moving from California to Alaska was not an option, though I seriously considered it. We tried the [ketogenic diet](http://livingwellwithepilepsy.com/2015/emilys-perspective/are-anticonvulsants-the-only-option.html) for a few weeks, but found it difficult to sustain. We seemed to have the blinking under control, but her memory still seemed impaired. So we decided to reduce and ultimately remove one of the anticonvulsants. The blinking came back. We dose-escalated slowly back up to the combination of two anticonvusant drugs and seem to be stable. Later this year, we will go in for another inpatient EEG to hopefully confirm the absence of seizures. My story is one of process. And I suspect we are still in the midst of it all. But I was given the advice from family friends who were tragically challenged with pediatric epilepsy, to have patience. “You know your child best,” they told me. Do your homework on the medications including any potential side effects, dose-escalate slowly and ensure you conduct base-line tests, in-process blood tests, take photos in case of rashes, and really observe how your child is responding to the medications. Advocate to your neurologist what you feel is best for your child. Keep a journal of significant events. As a mother, I wanted so badly to have a “cure” or a pill to fix what had been years of trying to figure out. But children, or at least Emily really couldn’t and still can’t articulate what she’s experiencing or feeling when she’s having the myoclonic seizures, and frankly she’s had them so long that she doesn’t know any different. Take a deep breath, and trust your gut. Take the time and this experience is not the type of process that anyone will enjoy, but know that once stability is achieved, you and your child will be safe–the foundation of health that is created will be the best one that you could have provided for her. #### Your Turn Let Lisa and Emily know they are not alone with a comment below or by submitting your own *[personal story](http://livingwellwithepilepsy.com/share-your-epilepsy-experience)*. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Rare Epilepsy --- ### [Purple Pumpkin Project: Did you paint yours?](https://livingwellwithepilepsy.com/life-with-epilepsy/family/purple-pumpkin-project-did-you-paint-29.html) **Published:** October 29, 2012 **Author:** Jessica K. Smith **Content:** [![](http://livingwellwithepilepsy.com/wp-content/uploads/blogger/-HTUkBHTkXYI/UI7dsuazwbI/AAAAAAAAA7o/e_l7aFurMmE/s200/IMG_1614.JPG)](http://livingwellwithepilepsy.com/wp-content/uploads/blogger/-HTUkBHTkXYI/UI7dsuazwbI/AAAAAAAAA7o/e_l7aFurMmE/s1600/IMG_1614.JPG) This year “The Purple Pumpkin Project” was started by Ron LaMontagne and to raise Epilepsy Awareness in honor of his 7 year old son. Check out the pictures The goal of the project was to get people talking about how purple is the color for epilepsy. You will find some great photos of purple pumpkins on the [Project’s facebook page.](https://www.facebook.com/Purple.Pumpkin.Project/) [![](http://livingwellwithepilepsy.com/wp-content/uploads/blogger/-nQIDOlahtZ8/UI7bStvfstI/AAAAAAAAA5g/0DFLzXjmLhQ/s200/IMG_1598.JPG)](http://livingwellwithepilepsy.com/wp-content/uploads/blogger/-nQIDOlahtZ8/UI7bStvfstI/AAAAAAAAA5g/0DFLzXjmLhQ/s1600/IMG_1598.JPG) From Ron and the team at the [Purple Pumpkin Project](https://www.facebook.com/Purple.Pumpkin.Project/): “All we are asking is to please color one of your Halloween Pumpkins Purple! Maybe have some “Seizure smart” info on hand and share your story with anyone that will listen!” Why does it matter? The prevalence and mortality statistics for epilepsy are comparable to those of breast cancer. More importantly, the death toll resulting from epilepsy and seizure-related causes this past year, was higher than the number of deaths resulting from AIDS-related causes at the height of the AIDS crisis.So enough pink. It’s time for purple to be the color of the day. Let us know if you painted your pumpkin too! ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Family **Tags:** Purple Pumpkin --- ### [Purple Pumpkin Time: Use our Snapguide to help](https://livingwellwithepilepsy.com/life-with-epilepsy/family/purple-pumpkin-time-use-snapguide-help.html) **Published:** September 26, 2013 **Author:** Jessica K. Smith **Content:** [![](http://livingwellwithepilepsy.com/wp-content/uploads/blogger/-nQIDOlahtZ8/UI7bStvfstI/AAAAAAAAA5g/0DFLzXjmLhQ/s200/IMG_1598.JPG)](http://livingwellwithepilepsy.com/wp-content/uploads/blogger/-nQIDOlahtZ8/UI7bStvfstI/AAAAAAAAA5g/0DFLzXjmLhQ/s1600/IMG_1598.JPG)Halloween is almost here and it’s time to paint your pumpkins purple. The Purple Pumpkin Project was started in 2012 by Ron LaMontagne in honor of his 7 year old son. The intention of the project was to get people talking about how purple is the color for epilepsy. This is an easy way to raise epilepsy awareness. Now it’s your chance to show your neighborhood your purple pride! ## Check out our Snapguide To make your purple pumpkin project easier, we’ve created a [Snapguide](http://snapguide.com/guides/paint-a-pumpkin-purple/). Just click on the image below to visit the snapguide. ## [![Snapguide: Paint a Pumpkin Purple](http://livingwellwithepilepsy.com/wp-content/uploads/2013/09/Screen-Shot-2013-09-26-at-7.50.55-AM-300x153.png "Screen Shot 2013-09-26 at 7.50.55 AM – Living Well With Epilepsy")](http://snapguide.com/guides/paint-a-pumpkin-purple/) ## A Fun Way to Raise Awareness From Ron and the team at the [Purple Pumpkin Project](https://www.facebook.com/Purple.Pumpkin.Project/): “All we are asking is to please color one of your Halloween Pumpkins Purple! Maybe have some “Seizure smart” info on hand and share your story with anyone that will listen!” We did this to create the Snapguide and found the ideas and colors were endless. Have fun and don’t forget to take pictures. ## Need Ideas If you need ideas check out the photos of purple pumpkins on the [Project’s facebook page.](https://www.facebook.com/media/set/?set=a.412861222115227.101524.407199666014716&type=3) We would love to see your photos. And let us know if you are having purple pumpkin painting parties (whew! that was a tough one!) We can’t wait to see your pics. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Family **Tags:** Purple Pumpkin --- ### [Gear up for Epilepsy Awareness Month](https://livingwellwithepilepsy.com/advocacy-awareness/epilepsy-awareness-month-2013.html) **Published:** October 5, 2013 **Author:** Jessica K. Smith **Content:** [![IMG_3033](http://livingwellwithepilepsy.com/wp-content/uploads/2013/10/IMG_3033-300x216.jpg "Living Well With Epilepsy Gear – Living Well With Epilepsy")](http://www.cafepress.com/livingwellwithepilepsy)Each year November is recognized as National Epilepsy Awareness Month. This is an opportunity for each of us to take a moment to spread the word about the millions of people living and dying as a result of this complex group of disorders. Here are a few opportunities to get involved: #### Purple Pumpkin Project If you are interested in spreading the word there are a few easy things you can do. You can kick off November with a purple pumpkin. [Check out our post on the purple pumpkin project.](http://livingwellwithepilepsy.com/2013/09/purple-pumpkin-time-use-snapguide-help.html "Purple Pumpkin Time: Use our Snapguide to help") #### Gear Up *Note: Affiliate links included below* [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/03/IMG_3601-300x200.jpg "IMG_3601 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/epilepsy-blog-relay-busiest-blog-relay-on-record.html/attachment/img_3601)If you are worried you don’t have gear to get you through the month, check out the [Living Well With Epilepsy Etsy Shop.](https://www.etsy.com/shop/LWWEDesigns "Get Gear") We’ve just added a bunch of new products with the Epilepsy Awareness design. My favorite is the coffee mug I use each morning. Or check out this super comfy t-shirt that my daughter and I love. My favorite is the long sleeve. You can find more products here: [Get your Epilepsy Awareness Gear ](https://www.etsy.com/shop/LWWEDesigns) #### More ways In honor of Epilepsy Awareness Month, the Epilepsy Foundation always has some great suggestions. [You can get a few ideas here.](http://www.epilepsyfoundation.org/getinvolved/neam/loader.cfm?csModule=security/getfile&PageID=41304) #### Need Ideas? If you are in need of ideas check out our [facebook page](https://www.facebook.com/livingwellwithepilepsy). Readers are posting their plans to raise awareness in November. [Check it out and add your own ideas!](https://www.facebook.com/livingwellwithepilepsy/posts/592528490806267) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Advocacy and Awareness **Tags:** Purple Pumpkin --- ### [Introducing our newest writer: Rachel Ehrhardt on testing in epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/testing-in-epilepsy.html) **Published:** January 27, 2017 **Author:** Rachel Ehrhardt **Content:** #### [![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/01/Rachel-Ehrhardt-300x300.jpeg "Rachel Ehrhardt – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/staff/rachel-ehrhardt-writer/attachment/rachel-ehrhardt)Our Newest Writer I am pleased to introduce you to Living Well With Epilepsy’s newest contributing writer, Rachel Ehrhardt. Rachel is a woman living with epilepsy in Texas. She comes from of an immediate family of four, where three of her family members suffer from a form of Epilepsy. Rachel has become a more frequent contributor over the past year and we are thrilled to welcome her to the Living Well With Epilepsy family of writers. Please extend your warmest welcome with a comment or a share! #### Testing in Epilepsy This article in particular is going to focus on the different types of testing in epilepsy. You will learn about options available and why each is used. As always if you have any questions please do not hesitate to comment at the bottom and I will get to them quickly. #### Magnetic Resonance Imaging (MRI) First up is Magnetic Resonance Imaging (MRI) and Epilepsy. This is one of the top imaging tests used in determining the underlying cause of epilepsy and other medical conditions. An MRI scanner uses radio waves and a magnetic field to show the physical structure of the brain. According to the [Mayo Clinic](http://www.mayoclinic.org/tests-procedures/mri/home/ovc-20235698), “When you lie inside an MRI machine, the magnetic field temporarily realigns hydrogen atoms in your body. Radio waves cause these aligned atoms to produce very faint signals, which are used to create cross-sectional MRI images — like slices in a loaf of bread.” An MRI involves entering into a metal like tube. You lie on your back on a bed and the MRI machine sends images to a computer which indicates different brain tissues in different colors. My brain is not abnormal and I’ve never had brain damage, but I have had the newest version of this test, which is only available at certain top tier research hospitals such as the medical center in Houston. They discovered I have a weak artery connection from my brain to my heart. If I were to have natural childbirth at some point it could be a major issue. I never would have known this were it not for the testing. #### Electroencephalogram (EEG) The next type of test in which is widely used in diagnosis of epilepsy is the EEG. It is a completely painless test but can have one of the biggest impacts on your treatment plan. During an EEG you are prepped just like you are going to sleep complete with pillows and blankets. Wire Leeds are placed on your skull with concrete like paste. It is best to go into this with one day dirty hair in order for the paste to stay in place. Also you are going to want to wash it out immediately after anyway. The test can provide information about the electrical activity that is happening in your brain. Very few people have unusual EEG results and it is usually due to other medical conditions. According to the [Mayo Clinic](http://www.mayoclinic.org/tests-procedures/eeg/basics/why-its-done/prc-20014093), “An EEG can determine changes in brain activity that may be useful in diagnosing brain disorders, especially epilepsy. An EEG can’t measure intelligence or detect mental illness.” #### Helpful Tips One important note about EEGs: many times they will try and induce seizures with sleep deprivation and light sensitivity. It is used to see how your brain deals with this environment allowing doctors to see the big picture before giving you a full treatment plan. For me, I suffer with issues of light sensitivity causing auras and seizures. So for me, this portion of the test could cause seizure activity. I suggest someone to come with you and drive you home. Also, my sister, Meredith found out in her most recent four day EEG that she has a completely different type of epilepsy then we ever thought. I think this test can be extremely helpful and educational. I truly hope this article has helped to educate you and maybe put you at ease a bit before going into your next testing. As always please feel free to comment and post questions or ideas you would like to learn more about in a future article. Thank you so much for your support. It means the world. ![author avatar](https://secure.gravatar.com/avatar/82d406d4460971f22d36968d14d1294a2a0c55c719c5b66a09acb2d2ad3872f2?s=300&d=mm&r=g) Rachel Ehrhardt Rachel Ehrhardt Streelman is from Houston , Texas. She has been a writer and contributor to Living Well with Epilepsy for two years. Rachel has had epilepsy since 9 months old. She comes from a family where her father, sister, and herself all have different forms of epilepsy. Rachel is married to Casey and they have a Cavapoo named Sheldon. [See Full Bio](https://livingwellwithepilepsy.com/author/rachel) [ ](https://livingwellwithepilepsy.com/author/rachel) **Categories:** Epilepsy Stories --- ### [The Trabasack: Making life with epilepsy easier](https://livingwellwithepilepsy.com/advocacy-awareness/trabasack.html) **Published:** February 9, 2014 **Author:** Jessica K. Smith **Excerpt:** Duncan Edwards, Director of Equip-able, Ltd, his wife Clare, have a child with Dravet's Syndrome. When their son was young, they worried he would injure himself in his stroller on the heavy plastic tray. So Clare, in looking for a functional lap tray that would also stay put on her wheelchair, ended up creating the first Trabasack on her sewing machine. **Content:** [![trabsack_joe_curve_connect](http://livingwellwithepilepsy.com/wp-content/uploads/2014/02/trabsack_joe_curve_connect-300x200.png "trabsack_joe_curve_connect – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/02/trabsack_joe_curve_connect.png)Duncan Edwards, Director of Equip-able, Ltd, his wife Clare, have a child with [Dravet’s Syndrome](http://livingwellwithepilepsy.com/2010/11/shining-spotlight-on-dravets-syndrome.html). In addition, Clare is in a wheelchair due to a spinal cord injury. When their son was young, they worried he would injure himself in his stroller on the heavy plastic tray. So Clare, in looking for a functional lap tray that would also stay put on her wheelchair, ended up creating the first Trabasack on her sewing machine. Since then, the bag has won design awards and been included in the Christopher Reeves gift guide. ## What is the Trabasack? [![trabasacklogo](http://livingwellwithepilepsy.com/wp-content/uploads/2014/02/trabasacklogo-300x125.jpg "trabasacklogo – Living Well With Epilepsy")](http://trabasack.com)[Trabasack](http://trabasack.com) is a neat little bag that is purposely designed to be used as a tray on your lap. It has a firm surface on one side and a small specially designed beanbag on the underside so it levels comfortably on your lap. The bag offers a convenience for just about anyone, but for wheelchair users it becomes an essential tool. It provides better accessibility at restaurants, cafes, at other people’s houses as well as at work and conferences. The bag also provides an alternative to expensive clamps and frames for people who need communication devices. Best of all, Trabasack can provide a mount for toys and educational devices for disabled children. Check out this video by [Blossomforchildren.co.uk](http://blossomforchildren.co.uk): ## What was the inspiration for this product?[![clare-edwards-192x300](http://livingwellwithepilepsy.com/wp-content/uploads/2014/02/clare-edwards-192x300.jpg "clare-edwards-192x300 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/02/clare-edwards-192x300.jpg) “My wife created the first [Trabasack](http://trabasack.com) on a sewing machine. An early years teacher spotted it and her relative wanted some for a special school she worked at. It snowballed from there really,” explains Duncan. Clare designed the bag to be a stylish product. The couple feels it is important that assistive products do not [stigmatize](http://livingwellwithepilepsy.com/2013/06/epilepsy-stigma-stories.html). They know from experience that these products should be something you want to buy rather than something you feel you have to buy. ## How has this product made your lives easier? When asked how the Trabasack makes their lives easier, Duncan replies, “My wife uses her [Trabasack (the Mini)](http://wheelchairlaptrays.com) every day and takes it everywhere. It is a place to eat, [work]() and more often than not, carries a cup of tea! My son also uses his Trabasack every day. He has the model that you can use velcro hook tape to attach things, [the Curve Connect](http://buggytray.com). He uses it for eating and drinking, toys, switches and his ipad. He takes it to school and can wear it safely while on the school bus so it keeps him entertained.” Duncan and Clare continue to be inspired by the many stories of how the Trabasack helps other families. For more information on the Trabasack, visit [Learn more on Dravet’s Syndrome](http://livingwellwithepilepsy.com/2010/11/shining-spotlight-on-dravets-syndrome.html) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Advocacy and Awareness **Tags:** assistive products --- ### [Tri Harder: Michael Poole, triathlete living with epilepsy](https://livingwellwithepilepsy.com/life-with-epilepsy/fitness/michael-poole-triathlete.html) **Published:** August 24, 2014 **Author:** Jessica K. Smith **Excerpt:** If you haven't heard of him already, Michael Poole is a 23 year old triathlete living with epilepsy who can claim 6 podium finishes and 2 wins during the 2014 season. **Content:** [![HOGS FOR THE CAUSE 2014](http://livingwellwithepilepsy.com/wp-content/uploads/2014/08/0667_01382-e1408400094793-261x300.jpg "Michael Poole_Living Well With Epilepsy – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/08/0667_01382-e1408400094793.jpg)*UPDATE: Around the same time this article went live, Michael experienced a seizure mid-way through an event. He put out a statement on his facebook page and has allowed me to share it with you here:* *“I had a difficult day today. Halfway through the bike segment during the Lifetime Tri Series in Chicago I had a bad seizure which caused me to crash. In the upcoming weeks, I will be working closely with my doctors to try to come up with a treatment plan. I am hopeful that this won’t take too long so that I can get back to training. Once I know more, I will provide you with an update.” – Michael Poole* --- If you haven’t heard of him already, Michael Poole is a 23 year old triathlete living with epilepsy who can claim 6 podium finishes and 2 wins during the 2014 season. Poole, originally from New Zealand, is also studying Chemical Engineering at the University of Southern Florida. This athlete and leader has taken the opportunity to join forces with Athletes vs. Epilepsy to become a spokesperson for people living with epilepsy. He recently also was invited to participate as the Grand Marshall for the Bike Challenge at Camp Boggy Creek. On the heels of all this epilepsy awareness activity, we reached out and Poole was kind enough to take a break from his training regiment to speak with Living Well With Epilepsy. ### On Epilepsy JESSICA KEENAN SMITH: Thank you for taking time to speak with Living Well With Epilepsy. It’s really important for those of us living with epilepsy to hear from someone like you who is a success as an athlete and a student. Do you mind giving us some background on when you were diagnosed and what type of seizures you have? MICHAEL POOLE: Sure, my epilepsy started when I was around 18. I have Grand Mal seizures. It was a real surprise for my family. No one else has seizures and we didn’t really know anything about it. SMITH: So, that would have been your senior year in High School right? POOLE: That’s right. I really struggled. I ended up having to drop out of school because of my epilepsy. SMITH: You completed your high school degree though. Because you are now working on your undergraduate degree at the University of Southern Florida. POOLE: That’s correct. I did finish high school and I am now working on my undergrad degree in chemistry at USF. ### The Triathlete![HOGS FOR THE CAUSE 2014](http://livingwellwithepilepsy.com/wp-content/uploads/2014/08/0667_00306-199x300.jpg "HOGS FOR THE CAUSE 2014 – Living Well With Epilepsy") SMITH: So, how did you get into triatholons? POOLE: Triatholon was a popular sport in my high school. I joined the running team and found I was good at it. SMITH: My readers can tell you, I am not super sporty. Tell me what is your training regiment like? POOLE: Tri is three sports. Each day I swim, bike and run. Generally I train about 30-40 hours a week. I am also a full time student. SMITH: Being a full time student and a full time athlete and having a chronic illness does not leave much time for anything else. What is your ultimate goal? The Olympics or something else? POOLE: I’m not aiming for the Olympics, but there are a few world championships I have in my sites. My real goal is to be ranked #1 in the US. SMITH: What about your studies? Do you have a vision for what you will do with your degree in chemical engineering? POOLE: Not at this point. My dream is to make a living as a triathlete. ### The Spokesman ![Camp Boggy Creek 2014 #2](http://livingwellwithepilepsy.com/wp-content/uploads/2014/08/Camp-Boggy-Creek-2014-2-300x168.png "Camp Boggy Creek 2014 #2 – Living Well With Epilepsy")SMITH: I’m going to shift gears a bit so I don’t take up too much more of your time. You recently visited Camp Boggy Creek, a year-round medical camp for children with serious illness. What was that like? POOLE: I wanted to visit Camp Boggy Creek because it was an opportunity to get involved in the epilepsy community on a local level. Athletes vs Epilepsy is great but it is a national effort. I really wanted to reach out locally. I just spent a day there but I talked to as many kids as I could. They have invited me to be the Grand Marshall of their Annual Challenge Ride. SMITH: That’s fun. I’m curious, what prompted you to go public about your epilepsy? POOLE: I mentioned that my family didn’t know anything about epilepsy when I was diagnosed. People seemed embarrased to talk about epilepsy but it occured to me that it doesn’t need to be that way. There doesn’t need to be any stigma. SMITH: Michael, it has been a pleasure. Thank you for taking time out of your busy schedule to speak with Living Well With Epilepsy. I look forward to following your success. ### Learn More To follow Michael on Facebook visit: To learn more about Camp Boggy Creek visit: To learn more about the SeriousFun Children’s Network visit: To learn more about Athletes vs. Epilepsy visit: ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Fitness --- ### [Interview with Coach Jerry Kill](https://livingwellwithepilepsy.com/advocacy-awareness/interview-with-coach-kill.html) **Published:** February 3, 2017 **Author:** Jessica K. Smith **Content:** [![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/02/Coach-Kill-Photo-Final-1.26.17-245x300.jpg "Coach Kill Photo Final 1.26.17 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2017/interviews/interview-with-coach-kill.html/attachment/coach-kill-photo-final-1-26-17)You may have heard of Coach Jerry Kill from his days as Head Coach of the Minnesota Gophers. Of course you may know him from when he was awarded Big Ten Coach of the Year in 2014, or from when he was named to the Kansas Sports Hall of Fame. You may also know him as an advocate for people living with and affected by epilepsy. [Coach Jerry Kill](http://www.scarletknights.com/sports/m-footbl/spec-rel/121916aaa.html), was recently named Offensive Coordinator for the Rutgers University Scarlet Knights football team. He retired from his position as Head Coach in October 2015 after experiencing epilepsy seizures, but he was able to gain control over his seizures in 2016 and began his new position at Rutgers University. Coach Kill took a break from recruiting and coaching to speak with [Jessica Keenan Smith](http://livingwellwithepilepsy.com/about-us/founder-jessica-keenan-smith), Founder of Living Well With Epilepsy about his new position and living with epilepsy. **Living Well With Epilepsy:** Thank you for taking time out to speak with me today. Do you mind if I ask when you were diagnosed with epilepsy? **Coach Kill:** Back in 2005 I had a Grand Mal seizure, though I may have had problems before then. **LWWE:** I’m sure you know your players and your fans look up to you. Is there anything unique you do to manage your seizures. **CK:** I’ve found that sleep is so important. I’ve also done meditation and yoga to help. And, taking time for yourself makes a difference. When I was Head Coach I used to get about two hours of sleep a night but now I’m able to sleep and take time for myself. **LWWE:** Is there anything you want people reading this to know about epilepsy? **CK:** When I was diagnosed I didn’t know anything about epilepsy. I didn’t even know there was such a thing as an epileptologist. Now I am lucky to have found a doctor who can help me manage my epilepsy. Raising awareness is so important. That’s why I am participating in the #TackleEpilepsy campaign along with [UCB](https://www.facebook.com/epilepsyadvocate) and the Epilepsy Foundation. UCB will be donating $26,000 to the [Epilepsy Foundation](http://www.epilepsy.com/) to recognize their support and to honor the one in 26 people who will be diagnosed with epilepsy in their lifetime. **LWWE:** It sounds like a great campaign. Can anyone participate? **CK:** Anyone can join [\#TackleEpilepsy](https://www.facebook.com/epilepsyadvocate) by sharing your game face for the big game this Sunday. All you have to do is: 1\. Take a photo of your best “game face” 2\. Post on Facebook using the hashtag #TackleEpilepsy **LWWE:** Coach, thank you again for taking time out of your busy schedule. I know the Rutgers University community is thrilled that you have come to New Jersey. We wish you an outstanding season. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Advocacy and Awareness --- ### [Epilepsy Blog Relay: Meet Janna Moore of Epilepsy Support Network of Orange County](https://livingwellwithepilepsy.com/advocacy-awareness/meet-janna-moore-of-epilepsy-support-network-of-orange-county.html) **Published:** November 26, 2022 **Author:** Jessica K. Smith **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/11/janna-pic.jpg "janna pic – Living Well With Epilepsy") If you have been reading Living Well With Epilepsy for a while you may have read one or two of [Soo Ihm’s articles](https://livingwellwithepilepsy.com/author/sooihm). She recently had the opportunity to connect with Janna Moore, MPA, Founder and Executive Director of the [Epilepsy Support Network of Orange County](https://esnoc.org/). ## Soo Ihm: I’m speaking with Janna Moore MPA, Founder and Executive Director of the Epilepsy Support Network of Orange County. The organization serves over 2,200 families who are affected with epilepsy in southern California. Thank you for taking the time to talk with me and raising awareness about epilepsy. ## Janna Moore: Thank you for having me. ## SI: How many people does the ESNOC serve? **JM**: We’re estimating that there are 38,000 with epilepsy in Orange County. If 60-70% have seizure control, then there are about 11,000 who don’t have seizure control. So, we primarily serve those who do not have seizure control. And then meet friends along the way who support us, and we love that! We’re always looking for people like you to join our cause. ## SI: How did you get started with the Epilepsy Support Network of Orange County? **JM:** When my daughter was diagnosed with epilepsy when she was 3 ½ years old, in 1997. I did some research on the internet. The information was spotty. There wasn’t a combined source of information. Epilepsy is very complex, very serious, and there were tragic outcomes. I started educating myself, reading books, interviewing people in the field. It didn’t seem that epilepsy was taken seriously. People were having seizures, cognitive and developmental delay. At that time, seizures were not scientifically connected to harming the brain. So, there was a big push by parents that the professionals take it more seriously and study the brain. Not long after that, they did confirm through autopsies that seizures do damage the brain. ## SI: I remember the community had the assumption that seizures do not cause death until SUDEP (Sudden Unexpected Death in Epilepsy) came to light. **JM:** Medical professionals cannot depend on theory. They have to show that it’s scientifically proven, so there was a big push since children were having developmental delays and cognitive losses because of seizures. Now that it’s proven, there’s more of an urgency. Epilepsy is urgent and medical professionals want to prevent every seizure possible. I think with the stigma and discrimination attached to epilepsy, it’s very difficult to accomplish goals when epilepsy was so far behind other diseases. So, while we’re educating and pressing for change and equity for people with epilepsy, there weren’t a lot of people behind this. Where are the people who are living well with epilepsy? Where are the advocates for epilepsy? I think individuals who are famous with epilepsy don’t want to lend their name to epilepsy awareness. We all play a role in epilepsy advocacy. We all need to come together on the same page, promoting epilepsy education and awareness. When death is an issue in epilepsy, we have to move as urgently as possible. We don’t have an actual national death rate for epilepsy. 50,000 has been used, but we need to have accurate statistics so we can have more funding and more awareness. There are many barriers to making progress, but that doesn’t make me any less determined. It would be so much easier and we could accomplish so much more if we had national statistics and data. When I got involved in epilepsy, I realized that it was one of the most complex and difficult conditions because it involves the brain, and the brain is the central processing center of body. Especially for adults, if you are overmedicated, it’s hard to navigate epilepsy. To me, it makes it more complex. Children have their parents to navigate epilepsy. Medication, appointments, testing, blood levels. ## SI: There are so many different aspects in epilepsy that you have to take care of. It’s hard to manage all of that. Right? **JM:** Managing seizures. I tell parents, “You’re the neurological director for your child.” When they’re adults, they don’t have that neurological director. They’re it. They have to do it themselves and try support themselves. Find work. It can get overwhelming. Our organization, [ESNOC](https://esnoc.org/), we work diligently to get seizures under control as soon as possible. When we have a child who is three years old, we want to try to stop the seizures before four years of age. We don’t want that child to continue to struggle with seizures at age 13 or 14. Through education, awareness, early detection, and treatment, it needs to be stopped as soon as possible. ## SI: How do you get the child to treatment? **JM:** That’s a good question. What the [ESNOC](https://esnoc.org/) does is present to schools, nonprofits, sports clubs, and any other entities that are in charge of children, teens, young adults, and those with cognitive or developmental delay. We do presentations on seizure recognition, showing the most common seizure types, then we talk about first aid, sensitivity training, and the importance of early detection and treatment. We’re also raising the alarm that seizures need to be taken care of urgently. And it is an emergency and needs immediate medical treatment. It needs to be stopped as soon as possible. If a child has seizures at age two, you don’t want to wait until they are 16 or 21. Everyone should have all the treatment options open: medications, brain surgery, medical devices, ketogenic diet. The sooner we stop the seizures, the better. ## SI: What is your proudest moment to date? **JM:** We have our Walk every year. We send out emails to the community to let them know what we’re doing. A family has been donating over the years. Their daughter suddenly started having some interesting episodes. A teacher for whom we had done seizure recognition first aid at school realized it could be a seizure, so they called me. They gave me a detailed description of the seizure, and I advised that she get treated urgently. She got diagnosed accurately, got the correct medication, and never had another seizure. She is now seizure free. This is our goal for every child with epilepsy. ## SI: What are your plans for the future? **JM:** We are looking towards sustainability. Coming back after Covid, we are looking to not only survive, but thrive. I am very proud of our organization, our commitment, passion, and our drive. So, what I’d like to do is get back on track with restarting our live program nights and bring our community back together. Extending our collaborations is also key. With our passion and commitment, we can grow our organization working with others. With our 30 programs, we cover the needs of almost all people with epilepsy. But we can be serving more people with our programs just by increasing awareness, increasing our social media presence–education and marketing– because we need to bring more people who want to help. We are helping many people, but need more volunteers. We need more support from outside organizations. We need funding. We need grantors. All this will help us grow. It’s a new day for epilepsy. With epilepsy centers, and new treatments and genetic testing, and the awareness we’re bringing about, more of our people know about epilepsy, epilepsy centers, and epileptologists, so theoretically our job should be getting easier. There are so many scientific entities aligning with epilepsy. Our community of support, our epilepsy centers, and nonprofits, continue to work together toward immediate change for families with epilepsy. ## SI: Thank you for talking to me and sharing your insights. **JM:** It’s been pleasure. Thank you for doing this. We need to expand the understanding of epilepsy, creating awareness and the opportunities for change and triumph! To learn more about ESNOC visit today. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Advocacy and Awareness **Tags:** esnoc --- ### [Epilepsy experience creates a whole new family of supporters](https://livingwellwithepilepsy.com/women-epilepsy/pregnancy/experience-with-epilepsy-creates-a-whole-new-family-of-supporters.html) **Published:** June 1, 2021 **Author:** Alyrical **Excerpt:** After Stephanie (known as Alyrical) was diagnosed with epilepsy the dynamic between her friends and family and loved ones changed. The road to being diagnosed with epilepsy was a difficult one that lead to major changes in her life affecting not only her health. **Content:** [![Alyrical](https://livingwellwithepilepsy.com/wp-content/uploads/2018/02/293066CF-9E37-441E-BF18-550923C09F10-300x297.jpeg "Alyrical – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/293066cf-9e37-441e-bf18-550923c09f10)***This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay) which will run from June 1 to June 30, 2021. Follow along!*** #### Stephanie’s Story I always use to say I don’t have friends, I just have acquaintances and family, because once you became my friend you were my family. After being diagnosed with epilepsy, I believe that dynamic shifted in my life slightly. My road to being [diagnosed with epilepsy](https://www.afromom.us/) was a difficult one that lead to major changes in my life outside of my health. A few years prior, I had already had some health issues that caused me to go legally blind in both eyes. I remember I had my first grand mal seizure on a Friday morning, the first Friday my now ex-husband had been off in over a year. All I remember is that I woke in the middle of the night and started listening to music, which lead to me falling asleep with headphones in my ears, as I often did. I later woke up to him hovering over me in tears frantically telling me I just had a seizure! I honestly couldn’t really comprehend what he was saying. Even when I was able acknowledge what he was actually saying, I did not have a full understanding of what seizures were. I was [pregnant](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/epilepsy-blog-relay-epilepsy-and-pregnancy-what-to-expect.html) at the time so my instant thought was my baby. I went to the hospital to get checked out, they didn’t say or do much but sent me home saying that I was fine. The next few days were hell, because I was in extreme physical pain, but I was also living in fear. “Why did I have a seizure?” “Should I sleep?” “Maybe I can’t listen to music at night anymore?” Crazy, I know, but add in pregnancy hormones, and it’s not like the hospital offered any guidance for me. Finally, I started sleeping a little but I was still asking myself, “Am I going to have anymore?” And it felt like I must have spoken it in to existence, because I had another one. This time I fell out of my bed and cut my head on a glass table. However, this time I couldn’t seek medical care because I had no one to watch my then 1-year-old son, not to mention I wasn’t exactly excited about the wonderful care I received last time. In a way it was ignored, until I started having what seemed like temporary black-outs, and I found I was waking up on the floor home alone, with my child. My ex flew my mother up to help. While she was there I woke up in an ambulance, because I had another severe seizure. #### What is epilepsy? When I finally saw doctor in the ER he just came in and said, “The [definition of epilepsy](https://livingwellwithepilepsy.com/epilepsy) is to have more than one seizure and you have had more than one, so you have epilepsy. I’m putting you on a medication to help control your seizures.” Long story short is that the medication wasn’t working, and the level of care I was getting in D.C. wasn’t helping me. To complicate the situation, the stress of it all was just making me worse to point where when I wasn’t numb I felt insane. So I went to stay with my mom for a few weeks to see some doctors. #### Epilepsy and Pregnancy One of the doctors I saw was a high-risk OBGYN who admitted me to the hospital the same day where I spent the next three months. Basically the seizures sent me into false labor every time. When I was 20 weeks pregnant, I was already 3 centimeters dilated. So I was placed on STRICT hospital bed-rest, like I wasn’t even allowed to use the bathroom in my own hospital room. I was told that my daughter would likely be still-born or have multiple birth defects. Thank God I went full term, and she was born perfectly healthy with no complications during childbirth. Those three months felt like an eternity at the time. A lot of people don’t recognize all the things that having epilepsy comes with outside is seizures such as nausea, anxiety, depression, family issues, and the list can go on. I personally didn’t recognize it and I was living it! My ex basically abandoned me, and our marriage fell apart. I suffered from postpartum depression, and I was extremely angry and resentful. #### Family of supporters However, during that time I gained so much awareness not just about seizures, my medications, and what they do to my body but about myself and who my real family is. I am a strong believer that everything happens for a reason and that your pain helps birth your purpose and that’s exactly how [Afro Mom](https://www.alyrical.com/) became what it is today. Many of the people that I once called family disappeared, and I felt like I couldn’t always find the support I needed. So I tried to create a supportive space for me and others like me. Don’t get me wrong, the family that did step up went above and beyond, and I would not have survived if it wasn’t for them. My seizures are still not 100% controlled, but I left that hospital a different person, with some acquaintances and a new family. ### Have you had an epilepsy experience you would like to share? Comment below. ![author avatar](https://secure.gravatar.com/avatar/d72f4b6c5773724e6cd830200ceee641d4eed558408fce59fd89eec38fa5a46f?s=300&d=mm&r=g) Alyrical Stephanie is a Visual Artist | ✞ | Inspiring & Sharing Mom Truths & Struggles While Overcoming Epilepsy | Legally Blind Visionary Creating with Purpose known to the world as Alyrical. Visit her site at: https://www.alyrical.com. [See Full Bio](https://livingwellwithepilepsy.com/author/alyrical) [ ](https://livingwellwithepilepsy.com/author/alyrical) **Categories:** Pregnancy **Tags:** chronic illness, Grand Mal, Pregnancy, pregnancy and epilepsy --- ### [Epilepsy Blog Relay: Dave shares his story as a father of a child with a disability](https://livingwellwithepilepsy.com/life-with-epilepsy/family/father-of-a-child-with-a-disability.html) **Published:** March 20, 2019 **Author:** Guest Contributor **Excerpt:** Dave shares his story as the father of a child with a disability in hopes that his words help other people who are on a similar journey. **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/06/IMG_6336-e1529673013800-249x300.jpg "IMG_6336 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/parenting/ieps-504-plans-and-the-need-for-epilepsy-awareness-in-education.html/attachment/img_6336)This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) ***which will run from March 1 through March 31. Follow along!*** Dave is the father of an energetic, hockey-loving son who has refractory epilepsy. On his blog, www.epilepsydad.com, he shares his experiences as the father of a child with a disability in hopes that his words help other people who are on a similar journey. By sharing his story, Dave hopes to reach out to other parents of children with special needs to let them know that they are not alone. Below is an excerpt from one of his latest posts: #### Excerpt from “A Movie Script Ending” Our journey with epilepsy has the makings of a movie. It has the *time before*. The time before epilepsy. The time before seizures. The time before medication, and side effects, and surgery. It has the *inciting event*. The first seizure in the lobby of the arcade. The second seizure onboard an airplane. The “ticks” that turned out to be seizures that snowballed into *status epilepticus* and months in the hospital. The days when my son couldn’t talk or move. The night when my son was surrounded by a team of doctors trying to save his life. It has an *enemy* and its name is Epilepsy. [READ MORE ](https://www.epilepsydad.com/community/a-movie-script-ending/) --- ***NEXT UP:*** Be sure to check out the next post by Elaine at [livingwellwithepilepsy.com ](http://livingwellwithepilepsy.com)for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay posts](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) you may have missed. [Share your story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Family **Tags:** Fathers --- ### [Epilepsy Blog Relay: My Kindergarten Epilepsy Advocate](https://livingwellwithepilepsy.com/advocacy-awareness/epilepsy-blog-relay-my-kindergarten-epilepsy-advocate.html) **Published:** March 28, 2019 **Author:** Guest Contributor **Excerpt:** Leah shares how 3-year-old big sister adjusted to her brother’s special needs almost immediately and waited on everyone else to catch up. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/03/rowan-and-jack-300x300.jpg "rowan-and-jack – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/advocacy-awareness/epilepsy-blog-relay-my-kindergarten-epilepsy-advocate.html/attachment/rowan-and-jack)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) ***which will run from March 1 through March 31. Follow along!*** “How many seizures has your baby had today” asked my 3.5-year-old daughter, Rowan, as she regards her new little brother in my arms with a challenging look on her face. I answered, playing along, “uh, none so far today”. As Rowan held a little baby doll donning an NG tube just like Jack, her little brother nestled in my arms, she told me, “Well my baby has had three seizures so we have to go to Egleston, see you later.” And away she pranced clutching her special needs baby doll and click-clacking in her too big plastic princess heels. My first thought was that I should probably tell her not to play that game at school; and then, is it even healthy to let her play “seizures”? My insides burned with regret because in just a few short weeks since her brother’s birth, Rowan’s life has changed so drastically that she now plays seizures, hospital, and therapy games with dolls. But now, over two years later, I can so clearly see the truth in what my daughter was doing in her newfound play activities. My 3-year-old had already adjusted to her brother’s special needs and was waiting on everyone else to catch up. I felt it then, but I know it now: she will always be his biggest advocate and best friend. --- **Related: [5 year old Riley shares tips on epilepsy first aid](https://livingwellwithepilepsy.com/2018/parenting/tips-on-epilepsy-first-aid.html)** --- #### Love and acceptance Epilepsy has changed my little family in unimaginable ways. While it has caused so much heartbreak, epilepsy has also provided a certain perspective that we may have otherwise never gained. However, there is no perspective to be had when you’re in a fight for your child’s life so it was difficult to watch my daughter playing “seizures” when my son was still an undiagnosed infant suffering intractable epilepsy and frequent hospitalizations. It’s interesting the little things that pop into your head while you’re suffering a trauma, especially one involving a child. You can find cruel and unique ways to blame and punish yourself for what has happened. For example, I didn’t know if I wanted a second child as Jack Jack was quite the surprise. I didn’t put this fear of the second child into words until I was pregnant with Jack and I told my family that my biggest concern about having another child was that it would take something away from Rowan’s life. It was hard for me to imagine loving another baby as much as I loved my daughter, who had been at my side for three full healthy happy years at that point. What if something is wrong with the baby? I had recently watched a show that portrayed special needs in children as scary and detrimental. I was worried in a way that I never was when I had been pregnant with my daughter. Maybe my body knew what my mind wasn’t ready to hear yet, but for a long time I blamed myself for saying those words out load and making them true. We can justify almost anything during times of tragedy, but my daughter has never seen her life as compromised or degraded in any way since her brother’s birth and I could not be more grateful for that. Rowan has continued to show the same sort of uninhibited love and acceptance for her brother as he has grown and gone through many changes with his medical needs. As he struggled to learn how to walk, she cheered him on and drew photos of him using his walker alongside the family. When I reprimand Jack for trying to take his shoes and SMOs off in the car, Rowan will pipe up and say, “he’s just using his hand motor skills like you always want him to”. How do I even argue with that? I can’t tell Rowan not stick up for her brother just because it will take me another ten minutes to get his orthotics and shoes back on. I can’t feel anything but pride in a big sister who is protective, empathetic, and aware. Nothing will ever take away the sting of epilepsy, nor the strain it puts on a family, but it doesn’t have to devastating all the time. All of Rowan’s friends/their parents know the words epilepsy/seizure and none of them are frightened or feel uncomfortable by these words or the cute little boy they usually surround because of his amazing big sister. Rowan continues to spread awareness in Kindergarten this year and has formed two special connections with teachers (not even in her grade) based around her brother’s special needs. Both teachers have made a point to tell me about these experiences with Rowan and I was once again blown away by the power of a special needs sibling and the connection of community. One of the two teachers has son with epilepsy also and now she always speaks to me when I visit the school or am in the car rider line and has even told me to reach out if we ever need anything. The other teacher is incredible at sign language, making her a Rockstar to Rowan because of all the signing we have done and still do with her brother. Rowan has blossomed as a big sister, thriving despite the obstacles, and become the best 6-year-old epilepsy awareness advocate around. It’s important to me to show both of my children how proud I am to spread awareness about Jack’s rare disorder and different needs, while also demonstrating that epilepsy doesn’t define Jack, nor does it define our family. --- ***NEXT UP:*** Be sure to check out the next post by Rafaela at [livingwellwithepilepsy.com ](http://livingwellwithepilepsy.com)for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay posts](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) you may have missed. [Share your story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Advocacy and Awareness **Tags:** children and epilepsy, family, siblings --- ### [Epilepsy Blog Relay: One epilepsy mom reminds us to let our kids play](https://livingwellwithepilepsy.com/life-with-epilepsy/family/epilepsy-mom-reminds-us-to-let-our-kids-play.html) **Published:** July 5, 2019 **Author:** Jessica K. Smith **Excerpt:** There are a lot of epilepsy moms and dads out on the sidelines worrying. One epilepsy mom encourages us to take a deep breath and let our kids play. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/07/Screen-Shot-2019-06-26-at-11.39.31-PM.png "Screen Shot 2019-06-26 at 11.39.31 PM – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2019/epilepsy-blog-relay/jun-19-ebr-posts/epilepsy-mom-reminds-us-to-let-our-kids-play.html/attachment/screen-shot-2019-06-26-at-11-39-31-pm)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** This blog post was submitted by [Sunovion Pharmaceuticals Inc.](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2019-sponsors-and-partners), the Founding Sponsor of the June 2019 Epilepsy Blog Relay. #### Terri’s Story I think that a lot of moms struggle with allowing their kids to do things that might not be entirely safe. We can’t help it! Our babies come out so small and fragile, then before you know it, they are fully formed and ready to take on the world. But to us, they still seem to be made of glass. I am no different than any other mom, and my three children did their fair share of activities that made me nervous. Watching my older kids, Brendan and Meghan, play sports was always anxiety inducing. But, what could I do? I knew it was important to let them get involved and be part of a team. Then there was my youngest son, Andy. Andy was diagnosed with epilepsy when he was about eight years old. I’ll never forget seeing his little eyes rolling back in his head as he laid in my arms. It was the first time I realized what was happening. My boy was having a seizure. As you can imagine, I was extra cautious with Andy. I was constantly making sure that his medications were working properly, that he was getting enough sleep, and that he was getting to all of his doctor’s appointments. I wanted to arm him with every advantage since life had dealt him this disadvantage. So, when he asked his dad and me if he could start playing sports, I was concerned. His father, my husband Bob, had a different attitude. He felt that Andy should be allowed to do everything that other children got to do. From a young age, Andy was fit and athletic. Why shouldn’t he be able to show that off? Well, I could think of about 100 reasons. What if he had a seizure on the field? How would his condition be affected if he suffered a head injury? Would it really be worth it to let him join in the fun if it could worsen his health? I was full of these “what ifs,” but Andy, his dad, and his doctor were not. They all encouraged me to let Andy have as normal a childhood as possible. At the end of the day, it wasn’t really up to me. Andy was a strong-willed child. I couldn’t stop him from joining his friends on the swim team and the soccer team, especially once he knew he had his doctor’s permission. So, from Andy’s elementary school days all the way through his high school graduation, you could find me cringing in the bleachers of various sporting events. Sometimes I’d relax, and sometimes he would have a small seizure on the field and I’d go to full-on panic mode. Life went on, and Andy grew up and became a happy 28-year-old who lives in New York City and is able to positively manage his disease. I have to say that as worried as I was about him playing sports, I am so glad I let go and fully supported him. I firmly believe that his time on various teams aided his ability to deal with his chronic illness as an adult. His time as an athlete also gave him the ability to be decisive and take risks. This included when making decisions about his treatment as he got older. Since I could no longer be at his appointments, he grew and took it upon himself to work with his doctor and get educated about his options. From trying numerous medications to making decisions about brain surgeries, you can bet I was right there supporting his decisions and cheering him on. It can be hard to let the ones we love go out and take risks, especially when the ones we love have epilepsy. I wanted to do everything I could for Andy when he was growing up, and it turned out that one of the best things I did for him was letting go. I know there are a lot of moms and dads out on the sidelines worrying. To all of you I want to say: Take a deep breath and let your kids play. It’s not easy to be a part of team epilepsy, but I promise you are not alone. SUNOVION and are registered trademarks of Sumitomo Dainippon Pharma Co., Ltd. Sunovion Pharmaceuticals Inc. is a U.S. subsidiary of Sumitomo Dainippon Pharma Co., Ltd. © 2019 Sunovion Pharmaceuticals Inc. All rights reserved. 06/19 APT-US-00138-19 *This blog post was submitted by Sunovion Pharmaceuticals Inc., the Founding Sponsor of the June 2019 Epilepsy Blog Relay.* --- **NEXT UP:** Be sure to check out the next post tomorrow at . For the full schedule on bloggers and more on epilepsy awareness, visit . ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. 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](https://linkedin.com/in/) **Categories:** Family **Tags:** epilepsy and sports --- ### [Epilepsy Blog Relay: A New Mom with Epilepsy](https://livingwellwithepilepsy.com/life-with-epilepsy/family/new-mom-with-epilepsy.html) **Published:** June 16, 2019 **Author:** Abby Gustus-Alford **Excerpt:** Abby's experience was probably similar to a lot of new moms. But, when you have epilepsy that pure exhaustion and extra stress can be a little dangerous. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/06/pic-2.png "pic 2 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/life-with-epilepsy/parenting/new-mom-with-epilepsy.html/attachment/pic-2)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** #### Abby on becoming a new mom My Prior to having my baby girl, Emma, I had many conversations with my neurologist. #### After the baby arrives I was shocked when he seemed more concerned about my health after the baby was born than during my pregnancy. He was monitoring my levels very carefully during the entire pregnancy, but when I would meet with him, he would always ask me about my plan for ***after*** the baby came. At that point, I really had not thought that far ahead. Because my pregnancy was so incredibly difficult, I really was focused on just getting through each day. Each time I visited the doctor, I would give my husband and my mom (the two people who know everything) an update. There was always a recurring theme of every doctor’s visit. What is the plan for after? Are you getting a night nurse? Will you have help? How will you ensure you are getting enough sleep? --- **Related:** [**Epilepsy Blog Relay: Epilepsy and Pregnancy – what to expect**](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/epilepsy-blog-relay-epilepsy-and-pregnancy-what-to-expect.html) --- Finally, we made the decision as a family and came up with a plan for my mom to come stay for the first four weeks after Emma was born. As the saying goes, nothing ever goes according to plan. And, of course, this didn’t either. Emma made her surprise arrival November 18, 2019, four and a half weeks early. She was healthy and happy, but the hard work was about to begin. #### Let the feedings commence Because Emma was so early (and I was bottle feeding because I DID NOT want my medicine passed on to her for any longer than it needed to be), we had to feed her every two hours. It was unbelievably hard, and there were no breaks. As soon as we finished one feeding, it was time to start the process all over again. Our story is not unique. I think most people need help when they have a baby. But, don’t be afraid to ask for it. When you have a newborn at the house, it is especially difficult to sleep, but do not be afraid to take care of yourself too. Having a seizure and being out of the game for two to three days is going to be way more difficult than taking that extra two to three hours for a nap while getting a little help from a family member or friend. #### Thank you, Mom Last, but not least, thank you to my mom. Every single night for six weeks she was on duty for half the night, except for a couple nights here and there, where we called in even more help! And best of all, we made it through the newborn stage seizure free! --- **NEXT UP:** Be sure to check out the next post at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com) for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) posts you may have missed. ![author avatar](https://secure.gravatar.com/avatar/fc6da7355dbaf3b5333da396f069a80e1cb0f14ba7b3b3c9d7276454b2c67b50?s=300&d=mm&r=g) Abby Gustus-Alford Abby Gustus Alford was diagnosed with epilepsy at the age of 12 after multiple grand mal seizures over six-mos. She has a BA from Purdue and her Master’s from Northwestern. [See Full Bio](https://livingwellwithepilepsy.com/author/abby) [ ](https://livingwellwithepilepsy.com/author/abby) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://abbyg_alford) **Categories:** Family **Tags:** new mom, newborn, Pregnancy --- ### [Epilepsy Blog Relay: My sister Ellyn and her epilepsy](https://livingwellwithepilepsy.com/life-with-epilepsy/family/my-sister-ellyn-and-her-epilepsy.html) **Published:** November 16, 2019 **Author:** Jessica K. Smith **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/11/laura-lubbers-300x300.png "laura lubbers – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/life-with-epilepsy/parenting/my-sister-ellyn-and-her-epilepsy.html/attachment/laura-lubbers-2)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** #### Laura’s Story **Growing Up with My Sister, Ellyn…and Her Epilepsy** My older sister Ellyn has epilepsy as a result of tuberous sclerosis complex (TSC). She was diagnosed at about three-months-old, so living with epilepsy was my normal. And by “living with epilepsy”, I mean watching her frequent seizures, administering a strict schedule of medications, and being hyper-attentive to her needs. It felt as if all my family’s time and energy were devoted to managing Ellyn’s seizures. While I am proud to now be the Chief Scientific Officer for[ Citizens United for Research in Epilepsy (CURE)](https://livingwellwithepilepsy.com/partners/cure), my relationship with epilepsy – and Ellyn – was a struggle. As a child, I resented epilepsy and the way it impacted my family. I resented the cancelled family events, the lack of a normal social life, and the constant demands it put on me. I resented epilepsy so much that many of my friends never knew I had a sister. While I was never interested in studying epilepsy, I was always fascinated by the brain. My first science project in junior high was on the brain and in graduate school, I studied how hormones impact the brain. In my mid-thirties, I had a life-changing epiphany about epilepsy. At a Society of Neuroscience meeting, I saw a poster presentation featuring the first images of a mouse brain modeled as if it had TSC. I knew how the cells in a healthy brain were organized, and this brain was far from that. Looking at the chaos of this brain, it finally clicked for me – Ellyn didn’t ask for, nor deserve TSC or epilepsy. I stood there in tears because I finally understood. This breakthrough allowed me to begin tackling my resentment toward epilepsy. It opened the doors to considering how I could support those with TSC and epilepsy. In 2012, I joined the [TS Alliance](https://www.tsalliance.org/) Board of Directors. I had already been advocating on Capitol Hill as a part of this group alongside my mother. In 2016, CURE approached me to become their Chief Scientific Officer. I already knew about CURE, being from Chicago, and remember my parents sharing their excitement when, years before, when they watched CURE Founder Susan Axelrod talk about epilepsy on a PBS show. I took a leap of faith, accepted the role, and am honored to help drive science toward cures for epilepsy every day. #### To siblings As a sibling to someone with epilepsy, I want other siblings to know that it’s OK if you feel angry, sad or scared, but I encourage you to share those feelings and not keep them bottled up inside as I did. #### To parents Parents, if there’s anything I hope my story can provide is the knowledge that it’s critical to create time and emotional space with your unaffected children for frank discussions. Even if you think your children without epilepsy are adjusting well growing up with a sibling with epilepsy, check in often, listen, and grow together. They may be more impacted than you realize, and it’s never too early to start addressing these feelings. #### My relationship today Today, Ellyn is doing better than ever. She still has challenges and seizures, but she is joyful and full of love, and has an amazing spirit. She tries so hard at everything she does! Ellyn never deserved the anger that I carried throughout my childhood years and I am grateful I turned that negative energy into a positive force. I still resent epilepsy, but I love Ellyn to the ends of the earth, and I won’t stop speaking out, fighting, and focusing on the research until cures for all who are affected by epilepsy are found. --- **NEXT UP:** Be sure to check out the next post tomorrow at . ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Family --- ### [Epilepsy Blog Relay: A letter to young Natalie](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-blog-relay-a-letter-to-young-natalie.html) **Published:** November 22, 2019 **Author:** Guest Contributor **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/11/nathalie-222x300.png "natalie – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-blog-relay-a-letter-to-young-natalie.html/attachment/nathalie)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** This blog post was submitted by [Sunovion Pharmaceuticals Inc.](https://livingwellwithepilepsy.com/partners/sunovion), the Founding Sponsor of the November 2019 Epilepsy Blog Relay. #### Natalie B.’s Story Sunovion is proud to feature #MyEpilepsyHero Natalie Beavers, author of this post, who offers a window into the ups and downs she experienced while living a life with epilepsy at a young age. Whether you’re living with epilepsy or a parent to a loved one, we hope these letters give a glimpse into the feelings and experiences common for young ones and the support needed to manage childhood and teenage years with epilepsy. #### Hello Natalie, You are such a beautiful child. Your smile brightens the room and everyone in it when you enter. It’s like you have the light when it’s dark. You were only five when you were diagnosed with epilepsy. At times, life may seem hard for you, but know that you are strong! I am here to share some advice that may help you along the way. I know you are frightened of elementary school because there are so many people there who aren’t your family. Sometimes you’re embarrassed about a visible bump or bruise from a seizure. You want to stay home from school to hide it. Please don’t spend so much time feeling afraid of embarrassing yourself and your family. You’re putting that shame on yourself. You have amazing and supportive people around you—friends and teachers who are right there with you. No one will bully or make fun of you because of epilepsy—and when you grow up, you’ll help young people living with epilepsy who *have* been bullied. You’ll help them be strong because *you* are strong, even though you might not know that yet. I see you standing at the classroom door saying, “I don’t think I want to go to recess today,” because you don’t want classmates seeing you have an episode. But your friends are knocking at the door, asking you to come out and play, because they don’t *care* that you have seizures. Yes, it’s scary coming out of an episode surrounded by strange faces and not knowing where you are. But someone will run to get your sister from her class. She will hold you tight and tell you you’re okay. It’s comforting to know that you have your two sisters right by your side. They are not ashamed of your epilepsy. They actually have advised their classmates and even those in the neighborhood about it. So, it’s okay if you want to play outside with your friends and have some fun or even participate in school activities. Your sisters will always have your back and they love you dearly. Also know that your parents absolutely love you Natalie. Yes, they were shocked when their baby girl was diagnosed with epilepsy but it didn’t change the love they have for you. Dad is there to pick you up when you fall down and give you those encouraging words: “No one’s life will be easy, so we have to stay encouraged and keep going.” Mom is there to help heal those scars life deals you and put a smile on your face. She’s always there to make you laugh out loud even when you’re hurt. Remember, they both told you to keep your head up and smile no matter what. So do that Natalie! One day you’ll even have two sons who will remind you that they’re not ashamed of your seizures. They want you to keep your head up, too. Always remember this, you were given this life because you are a chosen one. You are strong, beautiful, courageous, and smart. One day you will advocate for and empower people around the world. You’ll create a book to help others and even receive awards because of this life. You will overcome this, Natalie. Take one day at a time and never give up! When your troubles try to scare you, just show them that you are stronger than they are. Remember that getting back up and going on with your life after a seizure is a courageous thing. You are brave! –Natalie today © 2019 Sunovion Pharmaceuticals Inc. All rights reserved. 10/19 NPC-APT-US-00016-19 This blog post was submitted by Sunovion Pharmaceuticals Inc., the Founding Sponsor of the November 2019 Epilepsy Blog Relay. --- **NEXT UP:** Be sure to check out the next post tomorrow at . ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories --- ### [Transition of Care: Transitioning Adolescent Epilepsy Patients](https://livingwellwithepilepsy.com/life-with-epilepsy/family/transitioning-adolescent-epilepsy-into-adult.html) **Published:** July 8, 2020 **Author:** Jessica K. Smith **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/07/Zecavati_Nassim_LR_1.jpg "Zecavati_Nassim_LR_1 – Living Well With Epilepsy") *This blog post was submitted by [Sunovion Pharmaceuticals Inc](https://livingwellwithepilepsy.com/partners/sunovion). [Dr. Nassim Zecavati](https://neurology.georgetown.edu/zecavati)* *is a paid consultant of [Sunovion Pharmaceuticals Inc](https://livingwellwithepilepsy.com/partners/sunovion). Certain organizations are mentioned in this post; this does not constitute an endorsement by [Sunovion](https://livingwellwithepilepsy.com/partners/sunovion) of these organizations.* ## **Meet Nassim Zecavati, MD, MPH** Transition of care is a stressful time, but it doesn’t have to be. As a board-certified pediatric neurologist who leads a transition of care clinic, I’ve cared for many families who do not fully appreciate the importance of transitioning care, especially for patients with epilepsy. ## **What is Transition of Care in Epilepsy?** So, what do we mean when we say “transition of care,” specifically for young people with epilepsy? It’s the process in which pediatric patients shift their health care needs to an adult health care system. There are locational, vocational, educational, and medical decision-making considerations that are important to take into account when going through the process of transition. By starting the dialogue early and continuing the conversation with their neurologist, patients will be able to address all aspects of care, making the transition as smooth as possible. However, I’ve noticed that if the process of transitioning young patients is neglected, there is a risk that vulnerable patients with epilepsy may drop out of the health care system after adolescence. It’s a challenging time for young patients who are turning eighteen, facing issues such as power of attorney, guardianship, and the apprehension and uncertainty that comes with navigating an intimidating adult health care system. Young patients benefit from learning strategies to balance seizure management with their social/emotional needs so that neither is neglected. To better prepare epilepsy patients, families are strongly encouraged to start talking to their health care providers about transition of care as early as 12 years of age, and it is recommended to continue the discussion regularly. This will make it easier for patients and their families to determine what types of support they will need going forward. Talking to patients early enough and creating a care plan with them is especially important for patients with neurodevelopmental disabilities. That way, by the time the patient turns 18, any issues that may arise will have largely been addressed. Going through a formal transitions clinic assists families in finding the right adult health care provider. I would encourage families who are embarking on the transition path to go to [GotTransition.org](https://gottransition.org/) for general health care transition resources or [ChildNeurologyFoundation.org](http://ChildNeurologyFoundation.org) to learn about transitioning from a child neurologist to an adult neurologist. Some of the resources they provide include a [Transitions Tool Kit](https://gottransition.org/resource/?hct-family-toolkit), a checklist that goes over the steps that should be addressed for families and providers. Patients and their families benefit from learning about the health care team and how treating epilepsy and maintaining overall good health changes with age. The hope is to support and empower patients to become successful, healthy, and as independent as possible. We want to wrap these informative and necessary services around patients in order to provide the best neurological care possible and to ultimately improve health care outcomes and patient satisfaction. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Family --- ### [Emotions and Epilepsy: The Medical Team, Support Groups, and Caregivers](https://livingwellwithepilepsy.com/life-with-epilepsy/caregiving/emotions-and-epilepsy-the-medical-team-support-groups-and-caregivers.html) **Published:** March 12, 2021 **Author:** Soo Ihm **Excerpt:** Whether you are struggling with uncontrolled seizures or your seizures are fully controlled, you likely are dealing with complex emotions. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/02/img_1047.jpg "img_1047 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2021/02/img_1047.jpg)Emotions and Epilepsy Emotions are at the heart of what makes us human. They are a part of everyday life for everyone. We all have challenges to deal with, but for people with epilepsy there are certain factors in our lives we share. First, there are seizures and side effects from the medications and other treatments. Then, there is the social element. Epilepsy is still a misunderstood disorder despite our activism. It is getting better, but myths still persist. Finally, there is the role of support in the home. Whether you are struggling with uncontrolled seizures or your seizures are fully controlled, you likely have to deal with complex emotions in addition to medications and the side effects they cause. Many of the anticonvulsant drugs can cause sleepiness and blurred vision, as well as many more severe side effects including anxiety and depression. They can even lead to suicidal thoughts. #### Your Medical Team It is important to have a good medical team backing you up, listening to your every need. The relationship between doctor and patient is not one-sided, in which the doctor tells the patient what to do, which medicine or treatment to take. [It is a partnership.](https://livingwellwithepilepsy.com/2020/epilepsy-blog-relay/important-topics-to-discuss-at-your-next-medical-appointment.html) You, the patient, are an active part of your medical care. If you are unsatisfied with how your doctor is treating you, despite all your efforts, it is time for a second opinion. In the 1990s, when the [VNS ](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/living-with-vns-and-rns.html)came out, my neurologist was excited about it and offered it to me as a treatment. At that time, putting a machine in my body was not the most palatable thing I had in my mind, so I declined. However, at every appointment after that, my doctor kept pushing me to have it. The more he pushed, the more I rebelled. It was time to find a new doctor who would listen to me, and I found one. #### Your Epilepsy Support Group This is where a good [epilepsy support group](https://livingwellwithepilepsy.com/2018/livingwell/relationships/expanding-a-support-system-through-encouraging-relationships.html) comes into play. The resources they provide, such as a list of excellent epilepsy specialists, is invaluable for us struggling with epilepsy. Their meetings are the perfect place to talk about your problems. Everyone will relate and may be able to give you advice. Before COVID-19, transportation was a problem for some to get to the meetings. Now that they are online, it is a lot easier. Unfortunately, if you don’t have a computer with internet access, you won’t be able to enjoy these benefits. One thing to remember about support groups is that there isn’t a one size fits all. You may have to shop around to find one that you are comfortable with and suits your personality. The good thing is that you are not limited to a group in your vicinity. You can even join a group long distance. For example, if you live in Alabama, you can join a support group in California. Not only that, there are groups on social media. It is liberating to have all these choices. I am lucky to have access to two support groups in Orange County, California, where I live: - [Epilepsy Support Network of Orange County Adult Social Group](https://esnoc.org/adult-family-groups/) - [Epilepsy Foundation Orange County Adult Support Group](https://epilepsyorangecounty.org/support-groups/a-place-some-space-an-online-support-group-for-adults-with-epilepsy/) They are different but good in their unique ways. I love the fact that I don’t have to worry about [transportation](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/epilepsy-and-transportation-how-an-electric-bike-saved-the-day-for-one-mom-in-portland.html)! #### Your Caregiver Network However, we need more than an epilepsy support group. Family and friends are the bedrock of your well-being. They are always there for you when you need them. They may not understand everything you are going through, but they are committed to your health and happiness. For adults with epilepsy, these relationships can be difficult to manage, especially because of our lack of, and desire for independence due to seizures and side effects. Although [caregivers](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/rest-for-caregivers.html) most likely are overprotective, it is only because they care. It is hard not to be annoyed, but we have to remember they have the best intentions in mind. Open, honest communication is the key to a strong relationship. Even I have to remind myself about this. At times, I get frustrated with my lack of seizure control. However, I have a very good support system. My family cheers me on in everything I do. I take classes at the local community college and play the piano on my own. #### Relationships and Two-Way Communication Our emotions as people with epilepsy are dependent on many factors including our individual medical situations, access to good epilepsy social networks, and a support system of family and friends. The relationships we form with our doctors and medical team is also crucial to seizure freedom. And, without a support group, it can be more difficult to live with your epilepsy. There is a wealth of resources for people with epilepsy. It is a matter of finding the right one. Finally, the ones who love you must be by your side all the way. All of these relationships have one thing in common: they require two-way communication. If this does not exist, it is going to be extremely difficult to achieve what you want: seizure freedom and an excellent quality of life. However, with all of these elements intact, it is possible to have a good, emotionally satisfying, and hopefully seizure-free life. Let’s hope it comes true for every one of us. ![author avatar](https://secure.gravatar.com/avatar/d52fbb50f14201cb1c4aa52292adb331e89b5086a1db0c1711fed2af943b5367?s=300&d=mm&r=g) Soo Ihm Soo writes the blog Soo’s Epilepsy Corner and is a regular contributor to Living Well With Epilepsy. She lives in Orange County, California. She enjoys traveling, and has been to Europe three times. Her next journey will be just as interesting, with the RNS. [See Full Bio](https://livingwellwithepilepsy.com/author/sooihm) [ ](https://livingwellwithepilepsy.com/author/sooihm) **Categories:** Caregiving --- ### [When a Husband Becomes Epilepsy Caregiver](https://livingwellwithepilepsy.com/life-with-epilepsy/caregiving/epilepsy-blog-relay-when-husband-becomes-caregiver.html) **Published:** June 26, 2021 **Author:** Guest Contributor **Excerpt:** My husband, Pete, and I met before my diagnosis. But, when I was diagnosed with Intractable Seizures, Pete became my life-line. **Content:** [![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/05/IMG_5147-e1493688079331-225x300.jpg "IMG_5147 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2021/jun-21-ebr/epilepsy-blog-relay-when-husband-becomes-caregiver.html/attachment/img_5147) #### Sheri’s Story My husband, Pete, and I met before my diagnosis. When I was diagnosed with Intractable Seizures, Pete simply accepted it as another aspect of our lives together. Now that we have been together for nearly 30 years, Pete has become my life-line. I am sure Pete’s life has changed significantly, however he takes it in stride and has never once objected. Initially it was just the post-ictal care that I often needed. He would ensure that I didn’t get up and wander, or have additional seizures. He watched me like a hawk. #### Husband to Caregiver As time progressed my needs increased. My Rx’s increased to the point where I needed help keeping them organized, calling in refills, etc. Pete now handles that task for me. And now that I have a Vagus Nerve Implant, he is the one who uses the magnet to lessen or stop the seizure. This is yet another layer of medical care that he never expected, but our relationship has remained just the same otherwise. Finally, when I became unable to drive, (that was a big one) Pete essentially became my chauffeur. This HAS had a strain on our marriage purely based on my frustration from being unable to drive. Pete does everything in his power to make me happy; driving me when he isn’t at work, weekends, days off. Clearly my husbands’ life has taken a significant U-turn and he has done it with a smile on his face. He shows me that he cares, and caring is loving. I am a lucky girl. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Caregiving **Tags:** Epilepsy Blog Relay --- ### [When hope returns to a life with epilepsy](https://livingwellwithepilepsy.com/aboutepilepsy/treatments/when-hope-returns-to-a-life-with-epilepsy.html) **Published:** July 1, 2021 **Author:** Guest Contributor **Excerpt:** A little bit of hope has returned and grows every week, every month, like a light at the end of a long, dark tunnel as I continue parenting with epilepsy. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/04/011b0048-89b2-4525-8724-9a282172a52c-769x1024.jpeg "011b0048-89b2-4525-8724-9a282172a52c – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2021/04/011b0048-89b2-4525-8724-9a282172a52c-scaled.jpeg)Sara’s Epilepsy Story When the children were babies, I was determined to breastfeed them. It was better, I was told. It was natural. You should do it as long as you can. I had friends who breastfed for two years. I was going to show my love by giving from my body. One morning, I breastfed my newborn daughter while sitting on the floor. With the pink furry Boppy wrapped around my waist to help hold her in place, the soft morning light crept through the blinds. I watched the air particles dance around and relaxed as she latched to my breast and the milk let down. I felt her rhythmic sucking and watched my body begin to deflate. Her small hand rested on the top of my breast lightly, tiny fingers no longer than my nipple. #### Epilepsy and Parenting I felt a pulse in my brain and wondered how much time I had. Then I felt another pulse and knew. I pulled my daughter away from my body, breaking the latch harshly and laid her on the carpeted floor in front of me. So, I moved away from her, breasts exposed and leaking and waited. Her surprised and angry screams brought my son running in, not yet three-years-old with white-blonde hair. Mommy is having a seizure! He yelled. Take care of your sister. Get Daddy, I thought over and over, trying to shove these thoughts into his mind through telepathy. Protect your sister. #### Caregiver support [![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/06/Screen-Shot-2021-06-30-at-5.52.17-PM-294x300.png "Artist: Haley Montgomery – Living Well With Epilepsy")](https://www.etsy.com/listing/550661365/hope-is-the-thing-with-feathers-emily?ga_search_query=hope%2Bis&ref=shop_items_search_2)*Hope is the thing with feathers that perches in the soul Emily Dickinson [**Artist** Haley Montgomery ](https://www.etsy.com/listing/550661365/hope-is-the-thing-with-feathers-emily?ga_search_query=hope%2Bis&ref=shop_items_search_2)*My husband ran in the room and when the seizure was over, everyone was still safe. He sat with me on the floor, held my daughter to my breast to finish the feeding while I sat staring zombie-like straight ahead, wanting to go to bed but needing to empty my breasts. I had gone from being a protector, a provider to a danger. Five years, an [ablation](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/brain-surgery-for-epilepsy.html), an [RNS implant](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/my-journey-with-rns-surgery.html), and two rather traumatizing [EMU stays](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/tips-for-an-epilepsy-monitoring-unit-emu-stay.html) later, this is no longer the case. I have become the protector again instead of a threat to my children’s safety. The ablation interrupted the seizure network and made my seizures less severe. The RNS is slowly, slowly retraining my brain to communicate in a better way. #### Time and Treatment My children no longer fear being alone with me. Mommy doesn’t really have seizures anymore, they tell their friends. She has a computer in her head that stops them. It takes time, my husband says, but they are getting better. Can’t you see it? I can see it. I wish it was faster, but I can see the progress. A little bit of hope has returned and grows bigger every week, every month, like a light at the end of a long, dark tunnel. It is faint, but it is getting a bit brighter. I can see it now. I will stay the course, I will continue the fight. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Treatments **Tags:** Pregnancy, RNS --- ### [On CDKL5: A story of a hard to recognize illness in kids](https://livingwellwithepilepsy.com/aboutepilepsy/seizure-types-syndromes/rare-epilepsy/one-story-of-a-hard-to-recognize-illness-in-kids.html) **Published:** July 12, 2021 **Author:** Guest Contributor **Excerpt:** According to Randi, "When our daughter first had a seizure it was subtle, quick, and questionable." Today, she shares a story of hard to recognize seizures. **Content:** *[![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/11/21230808_701777556690930_2802189508317804213_n.jpg "21230808_701777556690930_2802189508317804213_n – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2017/11/21230808_701777556690930_2802189508317804213_n.jpg)Randi’s blog, [Sonya’s Story](http://www.sonyasstory.com/), is about her journey parenting daughter Sonya and sharing her journey with the [rare genetic disorder, CDKL5](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/mar-18-ebr-posts/epilepsy-blog-relay-the-race-against-time.html). Sadly Sonya, or Sonzee as the family affectionately refers to her, died peacefully at home in February 2020.* #### An excerpt from Sonya’s Story: When our daughter first had a seizure it was not like the movies. It was subtle, quick, and questionable. I honestly wonder how many times in her first days I missed, or how many I saw but attributed to something else. I often wonder if I felt them in-utero, or if her first one occured right after birth. In hindsight, the “wonky eye movement” we have learned are her trademark seizures. So many times these will be missed by those who are unfamiliar with her, to be honest, even those who know her extremely well can still miss these types. They happen when you turn your head to tie your shoe, when you blink, or when you rub your eyes. They are less than a second and look benign, but just as devastating to her brain as her other types because they tend to occur in clusters, seconds apart, and for lengthy periods of time. So many times when I point out a seizure to someone who has just met Sonzee the responses are always the same, “Oh wow, I never would have known that was seizure” and “How did you know that was a seizure?” The thing about seizures is that they are not always obvious and they are not what you might envision. [READ MORE](http://www.sonyasstory.com/) [Don’t miss her latest post!](http://www.sonyasstory.com/) --- RELATED: [Building supportive relationships in the special needs community](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/jun-18-ebr-posts/building-supportive-relationships-within-the-special-needs-community.html) --- #### About CDKL5 According to the [International Foundation for CDKL5 Research](https://www.cdkl5.com/),CDKL5 deficiency disorder is a rare developmental epileptic encephalopathy caused by mutations in the CDKL5 gene, and this can manifest in a broad range of clinical symptoms and severity. The hallmarks are early-onset, intractable epilepsy and neurodevelopmental delay impacting cognitive, motor, speech, and visual function. Although rare, the occurrence is believed to be ~1:40,000 -75,000 live births, making it one of the most common forms of genetic epilepsy. The CDKL5 gene provides instructions for making proteins that are essential for normal brain and neuron development. The CDKL5 protein acts as a kinase, which is an enzyme that changes the activity of other proteins by adding oxygen and phosphate atoms (a phosphate group) at specific positions. Researchers have not yet determined which proteins are targeted by the CDKL5 protein. CDKL5 was first identified in 2004, it stands for cyclin-dependent kinase-like 5, and its location is on the X chromosome. The X chromosome is one of the sex chromosomes; females have two X’s, and males have one X and one Y chromosome. The letters are an abbreviation of the scientific name of the gene, which describes what it does. The CDKL5 gene was previously called STK9. Many cases have been identified in boys, but because of the location of the gene, CDD mainly affects girls. This genetic mutation has been found in children diagnosed with Infantile Spasms, West Syndrome, Lennox-Gastaut, Rett Syndrome, cerebral palsy and autism. However, it is important to note that scientists and doctors do not know what causes CDKL5 mutations, or the full spectrum of CDKL5 disorders at this time. It is likely that there are many people affected by CDKL5 who have mild symptoms and no seizures. With continued research and awareness of CDKL5, we hope to build a more comprehensive understanding of the spectrum of this disorder, and begin the search for a desperately needed cure. #### More Resources For more resources on CDKL5 visit: [http://www.sonyasstory.com/p/resources\_19.html](http://www.sonyasstory.com/p/resources_19.html) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Rare Epilepsy --- ### [Clair and daughter Riley give tips on epilepsy first aid](https://livingwellwithepilepsy.com/aboutepilepsy/epilepsy-first-aid/tips-on-epilepsy-first-aid.html) **Published:** July 21, 2021 **Author:** Jessica K. Smith **Excerpt:** Five yr. old Riley has an amazing understanding of epilepsy and epilepsy first aid. Don't miss this video where Riley explains epilepsy first aid. Claire has shared her top 5 tips for explaining epilepsy with kids. **Content:** #### Clair’s Story Diagnosed at 19 Clair has learned to live with the unpredictability of epilepsy, has met some amazing people along the way, has gotten married and had two beautiful children. [EpilepsyBumps.com](https://epilepsybumps.com) tells her epilepsy story. #### Tips on explaining epilepsy to kids Clair’s [Epilepsy Blog Relay post](https://epilepsybumps.com/2018/06/23/explaining-epilepsy-to-our-children/) is a particularly important one. She covers explaining epilepsy to kids. The [video included here, thanks to Claire and daughter Riley](https://epilepsybumps.com), show how clear, honest and loving discussion around epilepsy can have a positive impact on children. *“Our five year old daughter has an amazing understanding of my epilepsy and epilepsy in general while our two year old is just at the beginning of that journey. I thought for today’s blog I would share our family’s top five tips for explaining epilepsy to young children.”* #### Epilepsy First Aid Clair writes, “Telling your child about epilepsy is all well and good but what I found was Riley’s biggest question was ‘what can **I** do if you fall over and shake mummy?’ And I think that is the most important thing to address, we all feel helpless in a situation if we don’t know what to do and kids of all ages can do a lot so empowering them to do what they can makes epilepsy a lot less scary. Keep things simple, just a couple of rules for what happens if ‘mummy falls over and shakes’. These are the strategies or rules we came up with for Riley.” [Read more](https://epilepsybumps.com/2018/06/23/explaining-epilepsy-to-our-children/) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy First Aid **Tags:** Epilepsy First Aid, kids and epilepsy --- ### [Kathryn's Story: Motherhood and Epilepsy](https://livingwellwithepilepsy.com/women-epilepsy/kathryns-story-motherhood-and-epilepsy.html) **Published:** November 5, 2021 **Author:** Guest Contributor **Excerpt:** Kathryn shares her experience with motherhood and epilepsy. She teaches her first child seizure first aid and her second how to cope with his own epilepsy. **Content:** #### ![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/10/IMG_20210623_143235_resized_20211012_074423703-225x300.jpg "IMG_20210623_143235_resized_20211012_074423703 – Living Well With Epilepsy")Kathryn’s Experience with Motherhood and Epilepsy As a 29-year-old woman, my first seizures came as a massive shock. They were at my son’s school with no warning, no rhyme or reason, just something that threw my life into chaos for no reason. I was devastated. I felt vulnerable, embarrassed, and helpless. My hopes of driving, living a normal life, or even feeling safe with my child were all taken away. I have tonic clonic seizures and vacant episodes. #### Teaching a child seizure first aid We had to teach my son, who was 7 at the time, how to put me into the recovery position, [how to call for help](https://livingwellwithepilepsy.com/2021/parenting/tips-on-epilepsy-first-aid.html) when I needed medical treatment, and when just to call his grandad or family friends. It’s something I still feel is a big burden for him, but he makes me so proud. After a very bad seizure when I vomited, he saved my life. After awhile and trying several types of medication, things got more stable. My seizures aren’t very well controlled right now, but I have gotten used to it. My family has been brilliant. Some friends were lost, but some friends were kept. They are so supportive of me and what it means to be [living with epilepsy](https://livingwellwithepilepsy.com/start-here). #### Teaching a child the tools for living with epilepsy It is now three years since I was diagnosed. I had another [child who also has epilepsy](https://livingwellwithepilepsy.com/2015/aboutus-lwwe/emilys-perspective/emilys-perspective-help-child-eeg.html). He has the same seizures as me but, as fate would have it, we have epilepsy for different reasons. I found this very difficult in terms of guilt and seeing him have seizures is very upsetting. The hospital trips, particularly during the pandemic, were tough. However, I feel better prepared having gone through this myself. I can equip him with the things he needs and tools to live a normal life in order to achieve all the things he might want to do in life. At times epilepsy is hell, but you can live with it. You just have to adapt things to suit your new circumstances. #### About the Author Kathryn Stewart is from Somerset, UK. Her Instagram handle is [@thelifeofkathrynelizabeth](https://www.instagram.com/thelifeofkathrynelizabeth/). ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Women and Epilepsy **Tags:** Epilepsy First Aid, family, First Aid, motherhood and epilepsy, parenting --- ### [Life with epilepsy in high school](https://livingwellwithepilepsy.com/life-with-epilepsy/school/epilepsy-in-high-school.html) **Published:** August 26, 2022 **Author:** Guest Contributor **Excerpt:** Jordan is 16 years old and a junior in high school and she's had epilepsy for the past 8 years. She shares bit of what it is like to live with epilepsy. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/11/jordan-tg-300x200.jpg "jordan tg – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/life-with-epilepsy/parenting/school/epilepsy-in-high-school.html/attachment/jordan-tg)Jordan’s Story Hi, my name is Jordan Franz. I am 16 years old and I am a junior in high school. I have had [epilepsy](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/nov-18-ebr-posts/5-tips-for-dealing-with-an-epilepsy-diagnosis.html) for the past 8 years. When I was 8 I had a grand-mal seizure in the back of my mom’s car. I was put into a medically induced coma for 11 days, the doctors did not think that I would make it. What got me through was my family. Having them by my side, and helping me learn everything over again, is still helping me today. My mom is my best friend. She is always there when I need her, and even when I don’t. School stresses me out a lot. My mom will sit with me and listen to me complain about my teachers or help me with my homework for hours until I’m done talking or want to go to bed. #### School with epilepsy As a junior in high school, I am very fortunate that my school understands that if I miss school a few days it is for medical reasons. They know that I am not skipping. My teachers will email me homework or give it to my mom so I can do it at home. This helps so I won’t be too far behind when I return. My teachers also sit with me and adjust the work for me and double check to make sure that I understand what is going on and what I need to do. When I go to college in a few years, I’m nervous that I won’t be able to find a school that will do this for me. I have started to look at a few colleges close to home that have good resources for people with disabilities. --- Related article: **[New to epilepsy? Start here](https://livingwellwithepilepsy.com/start-here)** --- #### Sports with epilepsy I started to swim when I was about 5 years old but my doctors told me that I had to stop when I developed epilepsy. Soon after leaving swimming, I found bowling. I love it. Bowling is a unique sport that has helped me pull through and made my life much more interesting. I have gone to Ohio and won money for college and gone to nationals and won more money. I plan on bowling until I graduate from high school and seeing if I can bowl in college as well. #### High school social life I find it hard to connect with people my age. Lots of them have not experienced similar things to what I have. I find it easier to talk to adults or people my age who also have epilepsy, or other medical diseases. Most of the people my age that I like to talk to live far away, which means that we don’t get lots of time to hangout. Some of my close friends that live close by get out of school earlier, but they have after school activities and can’t hangout until later in the day. On the weekend, they then have games and other things that they need to do. Those are some reasons that I love the epilepsy group, once every few days I talk to people who have epilepsy about whatever we wish to talk about. #### Epilepsy treatment At this point in my life, my doctors believe that they are close into finding a way to put my epilepsy in remission. My family goes with me every time that I am asked to come into the hospital, and my mom and dad still stay with me at night. When I miss bowling on Saturdays, my teammates are always curious as to what is going on and they want to make sure that I am ok. Having friends that care for me so much means a lot. My close friends always check in with me to make sure I’m ok, even if they have a game that day. School also tells me that if I miss school, to not worry about missing work. They say that my health comes first. My life has been very hard at times but, I wouldn’t change it for anything. [I wouldn’t be the person I am today](https://livingwellwithepilepsy.com/2016/epilepsy-blog-relay/its-who-i-am.html), or have met some of the amazing people I know if I didn’t have epilepsy. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** School **Tags:** epilepsy as a teen, Epilepsy Blog Relay, high school and epilepsy, teen with epilepsy --- ### [Epilepsy Blog Relay: Knowledge is power when it comes to complex epilepsy](https://livingwellwithepilepsy.com/aboutepilepsy/seizure-types-syndromes/cerebral-palsy-and-epilepsy/knowledge-is-power-when-it-comes-to-complex-epilepsy.html) **Published:** November 9, 2022 **Author:** Jennifer Lounsbury **Excerpt:** If my child hadn't been diagnosed with epilepsy, I’m not sure if I would know how to help during a seizure. Knowledge is power when it comes to first aid. **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/10/image3-225x300.jpeg "image3 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-nov-2017-participants/attachment/image3-3)This post is part of the*** [***Epilepsy Blog Relay™.***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) ***Follow along!*** #### Jennifer’s Story Prior to Colleen’s birth, I knew absolutely nothing about epilepsy. I had a febrile seizure as a child when a fever spiked, so when I found out that she had two seizures when she arrived at the NICU, there was an immediate thought that like my febrile seizure, maybe this was just something that happened in response to something else and surely it wouldn’t be permanent. But when I first got to see her, I couldn’t even touch her without it causing spikes in her brain activity. ## Complex Epilepsy 20 long days later when she was finally discharged, it was on two seizure medications. We were told by neurologists at the time that this would be something she would likely outgrow. But after every EEG, it was clear there wouldn’t be any slowdown in her abnormal brain activity. Her epilepsy has changed a bit drastically over the years, whether from changing medications or her body changing, I do not know. She had a lot of “silent seizures,” as a baby, so I only knew that she had one if an EEG happened to catch it. And even when it did, Colleen only stopped for a second then seemed to resume her usually activities. Now, I feel that they’re all so different. She has myoclonic jerks, clonic, tonic, absent, and atonic. And *this* is why awareness is so important. It not only affects her daily activities, but I’m also trying to raise awareness about what to do is someone has a seizure. If Colleen didn’t have epilepsy, I’m not sure to this day if I would know how to help. While realizing that your child may have to struggle with something is heartbreaking as a parent, I’ve read all I can to try to be her biggest advocate. ## School Support and IEPs I couldn’t be more thankful for her school, teachers, therapists who are so understanding and even *fighting for her*. Colleen hasn’t been doing well since the beginning of the school year, so her teacher made a list of all her regressions and had a meeting to see if we could figure out what was going on and specifically, what they could do to help her. I’ve never had to fight for her [IEP](https://livingwellwithepilepsy.com/2018/aboutepilepsy/special-education/ieps-504-plans-and-the-need-for-epilepsy-awareness-in-education.html), and probably my biggest fear as a parent, how she’d be treated by her peers, disappears when she is picked up from school and all her friends say goodbye to her. We hear all the time from teachers how other kids like to take turns pushing her on a swing, or wanting to wait until she was off the bus to walk with her. But I think this stems from awareness and compassion. It is far easier when you know what is going on, and that there are specific ways you can help a person. --- Related: [**Colleen takes on cerebral palsy and epilepsy with a smile**](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/jun-18-ebr-posts/colleen-on-cerebral-palsy-and-epilepsy.html) --- ## Safety at Home There have certainly been many ups and downs. Leaving her with a sitter while you work and medications being forgotten, or a myclonic jerk that led to *almost* needing stitches; It’s a very complicated world to try to navigate when you’re [trying to make sure your child is safe](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/jun-18-ebr-posts/epilepsy-blog-relay-dana-is-loving-life-as-an-epilepsy-mom.html), but is also thriving. It is so important to try to find ways I can advocate not only for her, but bring awareness for epilepsy as a whole. During her tough times, it was easy to feel lost and not know what to do to help, but also during those times, I’ve found there is a lot more questions being asked. If I can pass on just a little bit of information, then there is one more person who has more knowledge than they did before. Imagine if you were like me and had never known anyone with epilepsy, but you did have knowledge…knowledge is power and I hope that with it, the [epilepsy stigma](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/jun-18-ebr-posts/alisons-post-on-stigma.html) will end, and of course, can only hope and pray for more funding and research. ![author avatar](https://secure.gravatar.com/avatar/2d7fe6c0eded69888607fe806fbe9bc4b4f814de382f989b182dab6125aed61c?s=300&d=mm&r=g) Jennifer Lounsbury CP/Epilepsy Advocate. Photographer and designer. “Courage, dear heart.” [See Full Bio](https://livingwellwithepilepsy.com/author/jennylouns) [ ](https://livingwellwithepilepsy.com/author/jennylouns) **Categories:** Cerebral Palsy and Epilepsy **Tags:** #cerebralpalsy, #complexepilepsy, iep, myoclonic --- ### [Guide to the Fourth Trimester when Mom has Epilepsy](https://livingwellwithepilepsy.com/women-epilepsy/pregnancy/fourthtrimesterwithepilepsy.html) **Published:** May 1, 2023 **Author:** Jessica K. Smith **Excerpt:** As someone who has survived the fourth trimester, postpartum depression, and pre-eclampsia, I'm happy to share tips that will help during this stressful time. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/10/Maureen-e1679944845987-1024x683.jpg "Maureen – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2018/10/Maureen-e1679944845987.jpg)Any woman with epilepsy who has ever given birth knows that the fourth trimester can be more challenging than the first three. Your primary care physician, neurologist and ObGyn have all guided you and prepared you for the challenges throughout the first three trimesters — as much as they could — depending on the research they had available at the time you were pregnant. (I know some of you are shaking your heads at this) But when it came time to leave the hospital, you were left to your own devices to deal with sleepless nights, hormone fluxuations, medication adjustments, a new addition to the family, possibly post partum depression and much more. ## Back to work If you are anything like me, and your seizures were fairly well controlled, your epilepsy was the last thing on your mind. So when I went back to work, 4 months after delivering, my body including my brain was not ready. My commute was an hour and a half each way. My newborn was not sleeping through the night. I had postpartum depression and an undiagnosed slipped disk from the delivery. Needless to say it didn’t take long for me to end up flat on my back in a puddle of my own making in the conference room at work after a pretty severe grand mal seizure. ## A different approach If I had it to do all over again, I would have recruited more help. I would have taken more time. I would have enlisted the support of a doula. I would have stayed with family longer. I would have talked to a therapist earlier. I would have spoken up about my pain earlier. So learn from my mistakes. Below I have included a few things you can do for yourself or the ones you love who may be entering the fourth trimester. ## 1. Be Prepared There is a coalition of organizations that have dedicated resources to this issue. You are not alone and you do not need to struggle. [Mind the Gap](https://www.postpartum.net/mind-the-gap/) is a National Initiative led by Postpartum Support International and a broad-based stakeholder coalition comprised of leading experts from national professional and advocacy organizations. You are encouraged to learn more about the [Mind the Gap Coalition.](https://maternalhealthlearning.org/resources/mind-the-gap-a-strategic-roadmap-to-address-americas-silent-health-crisis-untreated-and-unaddressed-perinatal-mental-health-disorders/) [Get the PostPartum Toolkit ](https://newmomhealth.com/for-providers-articles/postpartum-toolkit) ## 2. Make meals easier There are a few ways you can do this. Whether it be through food box subscriptions or grocery delivery service #### Hello Fresh – Easy to Use and Good Variety [![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/04/hero-image.fill_.size_1200x1200.v1663234877-300x300.jpg "hero-image.fill.size_1200x1200.v1663234877 – Living Well With Epilepsy")](https://fave.co/44dtFeq)Our family has used a few different ones and We’ve been happiest with Hello Fresh. It seems to be the simplest to prepare and have a good variety of recipes to choose from. Also the price point is fairly comparable. If you know of a family who just had a baby this is a great gift. It limits the trips to the supermarket. Though with a baby its impossible to eliminate them completely. [For yourself or a Gift ](https://fave.co/44dtFeq) #### Hungry Root – Good for Vegan and Vegetarian Options [![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/04/Healthy-Groceries-Hungryroot-300x231.jpg "Healthy Groceries Hungryroot – Living Well With Epilepsy")](https://fave.co/40SYdPQ) We considered this service when I thought about going vegetarian for a while. There was a little bit of a rebellion in our house at the thought of no more sausage and hamburgers though. I do still insist on at least one or two nights of vegetarian dinners though my family is never happy with them. If your household is vegan or vegetarian I can say the products used by Hungry Root are high quality and delicious (to me at least). My family might disagree. [For yourself or a Gift ](https://fave.co/40SYdPQ) #### Misfits Market – No Subscription Fee [![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/04/MM_home-LIP-home-hero-mobile3-300x200.jpg "MM_home-LIP-home-hero-mobile3 – Living Well With Epilepsy")](https://fave.co/3VlkSmB)This is definitely a way to save time and a few bucks. The produce is not going to be as pretty but with all the diapers you are going to be buying, you won’t mind. And it might be nice to have one less trip to the supermarket. Most importantly in addition to no subscription fee the prices are less than the supermarket! [For Yourself or a Gift ](https://fave.co/3VlkSmB) ## 3. Sleep when baby sleeps Sometimes that is at night but more likely that’s in the middle of the day. So set yourself up for success. Consider adding a few things to your life that will ensure that you and baby get a few decent hours of rest so you can avoid the unnecessary and unexpected seizure. #### Alfani Pajama Set – Great for Nursing [![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/04/pjs-246x300.webp "pjs – Living Well With Epilepsy")](https://fave.co/3nkF2AD)Having a comfy reliable set of pjs that you can easily nurse in (if that’s your plan) means you have options. You can throw on a sweater, put baby in the stroller, go out for a short walk and come back and flop into bed for a short nap all while wearing these pjs. No one’s gonna know. You think there gonna know. But there never gonna know. [For yourself or a Gift ](https://fave.co/3nkF2AD) #### Hatch Rest 2nd Gen – Add some white noise [![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/04/Screen-Shot-2023-04-30-at-3.40.27-PM-300x283.png "Screen Shot 2023-04-30 at 3.40.27 PM – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2023/04/Screen-Shot-2023-04-30-at-3.40.27-PM.png) According to [HappiestBaby.com](https://fave.co/40Rnmu3), white noise works miracles with fussy babies and is an amazingly powerful cue for falling asleep…and sleeping longer. What I wouldn’t have given for this info when my daughter was a newborn (and 1, and 2, ugh). Apparently, even the [American Academy of Pediatrics](https://www.healthychildren.org/English/ages-stages/baby/crying-colic/Pages/Calming-A-Fussy-Baby.aspx "American Academy of Pediatrics") agrees that white noise can be helpful at improving sleep. [For yourself or a Gift ](https://fave.co/428GDID) ## 4. Hydrate, Hydrate, Hydrate Whether or not you are nursing, your body has gone through a major overhaul. And hormone changes major enough to create a life are no joke. In fact, our body is 60% water and our brain specifically is approximately 80% water. So if you want to avoid those seizures keep drinking your water. Personally I need constant reminders for this so here are a few things to help. #### Hydroflask in Lupine [![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/04/hydroflask.jpg "hydroflask – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2023/04/hydroflask.jpg)Try a Hydroflask in Lupine since purple is the color for epilepsy. It stays cold for 24 hours and can go right in the dishwasher. These are safe for you and baby especially if you are using formula. It’s a great way to keep sterile water for formula too. [For yourself or a Gift ](https://fave.co/3HmxDYr) #### Soda Stream – Terra [![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/04/Terra_Life-300x300.webp "Terra_Life – Living Well With Epilepsy")](https://fave.co/3Nr3tqW)If bubbles are your thing (they are most definitely not mine) then you may want to consider a soda stream to encourage you to drink more water. Personally bubbles make my teeth itch and immediately cause me to get hiccups. So they are a no for me. But I’m sure my husband and daughter would give anything for one of these gadgets. They go through seltzer like it’s their job. [For yourself or a Gift ](https://fave.co/3Nr3tqW) ## 5. Recruit all the help you can When they said it takes a village they weren’t kidding. You do not have to do this alone. If you are in pain, tell your doctor. If you are sad or anxious tell your loved ones so they can get you help. If you are having difficulty breast feeding contact the nurses station where you delivered. They will have resources to help. If your baby is having a reaction to formula or detergent talk to your pediatrican for alternatives. If you suspect something is going on but you can’t put a name to it (this one’s important!!) trust your gut. You know your baby and you know when something is not right. And hang in there. You got this. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. 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](https://linkedin.com/in/) **Categories:** Pregnancy **Tags:** #postpartumcare, fourth trimester, motherhood, motherhood and epilepsy --- ### [Holiday recipes for ketogenic kids](https://livingwellwithepilepsy.com/aboutepilepsy/treatments/ketogenicdiet/holiday-recipes-for-ketogenic-kids.html) **Published:** November 24, 2013 **Author:** Jessica K. Smith **Content:** [![holiday purple](http://livingwellwithepilepsy.com/wp-content/uploads/2010/12/IMG_1718-150x150.jpg "holiday purple – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2010/12/IMG_1718.jpg)The holidays can be a tough time to watch what you eat. Being faced with candies and cookies at every turn can make sticking to a diet hard enough, but having to follow a plan as rigorous as the [Ketogenic Diet](http://www.charliefoundation.org/faq/ketogenic-diet.html) can be practically impossible this time of year. Since there will be parties at home, work and school, it might help to have some keto-friendly recipes in your back pocket. Below are a few festive items that you can keep around the house or even bring to a party: [![](http://livingwellwithepilepsy.com/wp-content/uploads/blogger/_E8vqQ--lvIQ/TQgbDN6yZJI/AAAAAAAAAKc/c5HK2qXFN6g/s200/cheesecake.jpg)](http://livingwellwithepilepsy.com/wp-content/uploads/blogger/_E8vqQ--lvIQ/TQgbDN6yZJI/AAAAAAAAAKc/c5HK2qXFN6g/s1600/cheesecake.jpg) ## Cheesecake As a rule of thumb, calculate approximately 10g of raw, mixed egg for every 40g of cream cheese. Use up to the same amount of heavy cream as cream cheese. All of the carbohydrate remaining can be allotted to fruit (for garnish or mixed into the recipe). Canned, unsweetened pumpkin or unsweetened cocoa can also be incorporated into the recipe. [View the Recipe](http://www.charliefoundation.org/recipes.html) ## [![](http://livingwellwithepilepsy.com/wp-content/uploads/blogger/_E8vqQ--lvIQ/TQgMwVhD4_I/AAAAAAAAAKY/qstOnYkh33I/s320/Ketogenic%2BChocolate%2BBrownies.jpg)](http://livingwellwithepilepsy.com/wp-content/uploads/blogger/_E8vqQ--lvIQ/TQgMwVhD4_I/AAAAAAAAAKY/qstOnYkh33I/s1600/Ketogenic%2BChocolate%2BBrownies.jpg)Chocolate Brownies This is a soft, cake-like brownie that is mildly sweet. A brownie may be incorporated into a meal or snack. After baking, cut brownies into 10 pieces which results in a final weight of 21gm each containing 100 Calories with 1gm carbohydrate and a 3:1 ratio. Check out the KetoCalculator for help with recipes like this. [View the Recipe](http://www.charliefoundation.org/recipes.html) ## Keto Apple Cider Each sip is ketogenically balanced, so this meal would work if your child is sick and not very hungry. This meal is also great for travel. It can also be frozen and eaten with a spoon for a special treat. [View the Recipe](http://www.charliefoundation.org/recipes.html) For more great recipes visit the [Epilepsy Foundation](http://www.epilepsyfoundation.org/about/treatment/ketogenicdiet/holiday_recipes.cfm) and [The Charlie Foundation](http://charliefoundation.org/). And to stay up to date on the latest news visit . ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Ketogenic Diet **Tags:** Ketogenic Diet --- ### [Epilepsy Blog Relay™: An Everyday Challenge](https://livingwellwithepilepsy.com/aboutepilepsy/treatments/ketogenicdiet/living-with-epilepsy-is-an-everyday-challenge.html) **Published:** June 4, 2017 **Author:** Guest Contributor **Excerpt:** Emerging from the tunnel, I heard my mom’s voice say, “Jade, it’s okay now”. Living with Epilepsy is an everyday challenge. **Content:** ***[![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/05/IMG_9720-e1496018973440-285x300.jpg "IMG_9720 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/portfolio/jun-4-jadenelson/attachment/img_9720)This post is part of the Epilepsy Blog Relay™ which will run from June 1 to June 30, 2017. Follow along!*** #### Jade’s Story: The Train inside Me *Chugging down the track, the train overtook me at age eight. Minding my own business, doing eight year old things, I was zapped inside my tiny little body. I became extremely dizzy; the right side of my body went limp and was impossible to use.* *Before I could help myself, I fell straight backwards and the hard floor caught me. While I lay in wonder, a deep scream came from the depths of my soul. Realizing the scream was inside me and I was helpless, I waited for my mom to come to my side. My mom appeared as I slipped into a dark tunnel. There was nothing but blackness all around me. I could hear the sound of a train in the distance. Lying in the darkness, I heard the sound of the hallow train as it ran through me. The train came to a painful stop, leaving me with a pounding sledge hammer in my head. Emerging from the tunnel, I heard my mom’s voice say, “Jade, it’s okay now”.* *Living with Epilepsy is an everyday challenge.* #### Everyday Challenge When I think back to the day of my first seizure and the many days and years that came after I have a difficult time remembering the struggles. The woman I see in the mirror today isn’t the same person that struggled to survive. My diagnosis made me who I am today and I wouldn’t change one thing about it. Today I am seizure free and don’t feel I am battling Epilepsy. It has simply become a passenger in my journey through life. Each day I am aware it’s still there by the medication I take and the Diet that has brought me freedom in more ways than one. I have practiced the Ketogenic Diet for 19 months and I have gained hope and a fuller life because of it. I can work a full-time job, drive, not battle the many drug side effects and have hope that one day medication may be a thing of the past for me. So each day I wake up take my pills, follow the ketogenic diet, and educate myself because living a healthy lifestyle is an everyday job, there are no days off. Day to day I continue to tweak the diet, adjust medications, meditate, practice yoga, exercise and share my knowledge. Everyday life is about putting myself first and not feeling guilty about it. It took me 30 years to find my “new normal” and it has its own set of challenges which seem mild to the ones before. But I wouldn’t change a thing!! --- **[![](http://livingwellwithepilepsy.com/wp-content/uploads/2016/10/LWC1-150x150.png "lwc1 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/portfolio/nov30-16-3/attachment/lwc1)NEXT UP:** Be sure to check out the next post tomorrow by Jacob at . For the full schedule of bloggers visit [livingwellwithepilepsy.com](http://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). **TWITTER CHAT:** And don’t miss your chance to [connect with bloggers](https://docs.google.com/forms/d/e/1FAIpQLSf9bLAmE0owvlj46nRIE85fUq5Xakq7ofRSqL4ZFJz_3imB_w/viewform?c=0&w=1) on the #LivingWellChat on June 30 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Ketogenic Diet **Tags:** Epilepsy Blog Relay, Ketogenic Diet --- ### [Following a Ketogenic Diet Through the Holidays](https://livingwellwithepilepsy.com/aboutepilepsy/treatments/ketogenicdiet/ketogenic-diet.html) **Published:** December 11, 2013 **Author:** Guest Contributor **Content:** *[![robyn blackford](http://livingwellwithepilepsy.com/wp-content/uploads/2013/12/robyn-blackford-e1386432889490-150x150.jpg "robyn blackford – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2013/12/robyn-blackford-e1386432889490.jpg)Guest Post By Robyn Blackford, RD, LDN, the ketogenic dietitian at Ann & Robert H. Lurie Children’s Hospital of Chicago, IL* While some parents allow their children the freedom to gorge on holiday meals and treats, some do not have that luxury. Children following the Ketogenic Diet (KD) for the treatment of epilepsy must only eat foods that have been weighed on a gram scale and follow extremely strict guidelines with meal planning. The KD is a high fat and very low carbohydrate diet that often excludes foods from the bread/grain group or sweet treats. One small misstep on the Ketogenic Diet and seizure control can be lost. Parenting a child who follows a special medical diet, including the KD, can bring on feelings of failure, stress, frustration and embarrassment in a normal setting. But those feelings can multiply when sitting at the family holiday dinner table. Keep these suggestions in mind when helping your child stay on their medically prescribed diet through the holidays: ## 1. Maintain your family routine > - Stay on track with timing of meals and snacks, so the eating of food is predictable. This can lead to feelings of security and contentment for your child. ## 2. Plan ahead > - Talk to your child’s dietitian for any menus or recipes that you may need well before the time you need them. > - Make the recipe in advance to make sure that it tastes good and travels well, if you need it to do so. ## 3. Prepare your child > - Discuss what will happen at the holiday get-together, and practice what the child will say when offered food that is not on their special diet. This will help your child feel confident when approached by well-intentioned family members. ## 4. Take the focus off of the food > - While many family traditions are centered around meals, this may be a good time to remind your family about the other joys of the holiday season. > - For example, don’t focus on gifts of candy and sweets, but on the joy we feel when giving homemade cards to our family and friends. ## 5. Find your ally > - Partner up with another family member or friend that is going to be at the holiday celebration and enlist their help in supporting you in being a shield for any negative talk about your child’s special diet or any well-intentioned sabotage of the diet. A common hurdle in helping your child follow the Ketogenic Diet during the holidays can be psychological. Put on your game face and “yum” your way through your child’s Keto dinner of turkey, heavy cream based gravy, cauliflower mashed potatoes, green beans, pumpkin dessert and lots of butter. If your child sees that you think their food is delicious, then maybe they will be convinced, as well. It can’t hurt! By talking with your child, planning ahead and focusing on the celebration of the holiday, you will be successful in maintaining your child’s special diet through the holidays. Just remember that helping your child follow their special medical diet, or some may say “Magic Diet”, is one of the best gifts you can give them! [![How the Ketogenic Diet Works](http://livingwellwithepilepsy.com/wp-content/uploads/2013/12/how_ketogenic_process_works_lg-150x150.jpg "How the Ketogenic Diet Works – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2013/12/how_ketogenic_process_works_lg.jpg)[For more on the Ketogenic Diet check out this great infographic provided by the *Ann & Robert H. Lurie Children’s Hospital of Chicago.* ](https://www.luriechildrens.org/en-us/care-services/specialties-services/epilepsy/programs/Pages/ketogenic-diet.aspx) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Ketogenic Diet **Tags:** holidays, Ketogenic Diet --- ### [A Mother's Day Story: On Being a Mom with Epilepsy](https://livingwellwithepilepsy.com/women-epilepsy/mothers-day/its-a-fact-im-a-mom.html) **Published:** May 10, 2014 **Author:** Guest Contributor **Excerpt:** My life is the same as any other Mom. I wake up in the morning to my kids in my bed snuggled in next to me. I wouldn't have it any other way. The difference in my case, however, is that heavy stress and lack of sleep are seizure triggers for me. **Content:** [![With mommy by Jessica K Smith](http://livingwellwithepilepsy.com/wp-content/uploads/2014/05/IMG_4094-300x279.jpg "With mommy by Jessica K Smith – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/05/IMG_4094.jpg) *This anonymous [personal epilepsy story was submitted](http://livingwellwithepilepsy.com/share-your-epilepsy-experience) to Living Well With Epilepsy by a mom living with epilepsy.* My life is the same as any other Mom. I wake up in the morning to my kids in my bed. Unaware of what time they have snuggled in next to me, meanwhile at least half of my body is off of the bed completely. A foot in my eye and a little hand grabbing mine… I wouldn’t have it any other way. ## Mom Triggers The difference in my case, however, is that heavy stress and lack of sleep are seizure triggers for me. A night of birthday drinks with my husband, little sleep and just being “mom” was enough to give me my first seizure in 2 1/2 years. It was a brutal reminder of what my life is and how I cannot take any of it for granted. This seizure felt different. It was big. My mouth is chewed up so bad that eating and talking is tough. Feeling “normal” again, without pauses in my thought process or holes in my memory, has been hard to get back. ## A Kid at Any Age Everyone could feel that something was different. My own Mom hopped on the next flight out from Denver to take care of me all week. Brian had to travel for work, so I don’t know what I would have done without her. I guess I now realize being a mom, you will do anything for your kids…at any age (Thanks Mom). ## Old Dogs Need New Tricks Post kids, my body is different. I’ve been twitching in my lower extremities and my eyes, and experienced a few panic attacks. I attributed this just to not working out enough or getting older. A visit to my neurologist a few months ago had her worried that my Epilepsy was manifesting itself differently as I am getting older and old tricks just aren’t working anymore. She was proven right… unfortunately. I hate medication. I hate the way it makes me feel, that it can cause issues in my mental clarity, energy levels or gaining weight. This was the first time since giving birth that my Dr. asked me not just to adjust my medication, but also to try the Ketogenic Diet. The high fat, high protein diet is going to be much more difficult than anything I’m use to. I’m switching from 500 mg/day of depakote DR to 1000 mg/day ER, plus the diet. This is a big step in my journey, it will be a tough one. ## Mommies Adjust to Life’s Curveballs There are a few other things that this seizure did for me. It solidified where my kids are going to go to school. I now know I cannot make a 20 mile commute to and from work every day. I am unable to drive for 2 weeks and feel lucky that this time it is only 2 weeks. As a result, I have taken a step back to look at what is important. My kids were going to be fluent in Japanese and I was going to give them an opportunity of a lifetime in an immersion school. But, I don’t think that is the best thing now. I need to make sure I am close and there will be other opportunities. I now know this is the right decision. Lucky for me, Brian feels the same way. **Happy mother’s Day to all you mommies living with epilepsy out there.** **[Share your own personal experience](http://livingwellwithepilepsy.com/share-your-epilepsy-experience "Share your epilepsy experience")** **[Read other personal experiences](http://livingwellwithepilepsy.com/personal-stories "Personal Stories")** ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Mothers Day **Tags:** depakote, epilepsy, Ketogenic Diet, Mom, Mother's Day --- ### [Epilepsy Blog Relay: How running and a keto lifestyle keeps seizures at bay](https://livingwellwithepilepsy.com/aboutepilepsy/treatments/ketogenicdiet/epilepsy-blog-relay-how-running-and-a-keto-lifestyle-keeps-seizures-at-bay.html) **Published:** June 2, 2018 **Author:** Guest Contributor **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/04/Headshot-1-236x300.jpg "Headshot-1 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/headshot-1)**This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from June 1 to June 30, 2018. Follow along!** #### Brodi’s Story Epilepsy should be a four-letter word, or so I thought. I have lived with epilepsy since I was three years old, and while my episodes have certainly frustrated and scared me, they have never limited me. My seizures began around the time I was being sexually abused by my father. I heard him say that, and of course I didn’t know what being possessed meant, but I knew it was bad. I never saw the man again after the age of six. As I grew up my Petite Mal seizures grew worse, even though the neurologist said I would grow out of them. The kids at school would chase me around making fun of the way my eyes rolled back in my head. My mom taught me how to be strong through the teasing, so when I didn’t react the teasing quickly ended. #### Strong Body During my teenage years Grand Mal seizures became a new reality. I had already been seeing a new neurologist who finally put me on medication. At the age of 17 I fell in love with running, and joined the cross-country team. Running is something that allows me to relax, think, and keep my seizures at bay. When I was 25 I finished my first marathon, Hood to Coast Relay (192 miles split between 12 people), and several other short distance races, including a half marathon on a narrow trail. Running led me to snowboarding, which could be incredibly dangerous for someone living with epilepsy, but it has been the best place for me to focus and leave the world behind. Mind you, I never ride alone, and I’d never go if my petite mal seizures were acting up, indicating I may be at risk for a Grand Mal seizure. #### Strong Mind Athletics is a wonderful way to stay physically strong, but what about my mind, the epicenter of seizure activity? I attended college and became very active in extra curricular activities. I was President of the Student Political Action Committee, kept my grades at a 3.5 average, and worked at Nordstrom. During college I accomplished something many can only imagine; I spoke at the United Nations during a National Model United Nations Conference. During my speech many “real” delegates were present along with 10,000 college students from around the world. I graduated college with honors and got a job teaching Anesthesiologists and Perioperative Nurses how to use Epic, an Electronic Health Records program. I am now working toward the most important goal in my life; educating the world and change the stigma around epilepsy. #### Ketogenic Lifestyle Throughout my journey I have never made my condition public knowledge. Today, I have changed my approach and started sharing my life and my journey. I am now using diet therapy, specifically the Ketogenic lifestyle, to diminish my seizures. I am still on medication, but I hope to continue the [Keto lifestyle](https://livingwellwithepilepsy.com/2013/epilepsy-news/ketogenic-diet.html) and see where that leads me. More importantly, I am at peace, and I am strengthened in my resolve to see change. --- **NEXT UP:** Be sure to check out the next post by Sharon at . **TWITTER CHAT:** Save the date for the #LivingWellChat on June 30 at 7PM ET. [![epilepsy blog relay](https://livingwellwithepilepsy.com/wp-content/uploads/2018/05/june-2018-social-EBR1-150x150.png "june 2018 social EBR(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-participants/attachment/june-2018-social-ebr1)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our [generous sponsors and partners](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-sponsors-and-partners)! [Participate as a November Blogger ](http://bit.ly/Nov18EBRForm) [Become a November Sponsor ](http://bit.ly/1819EBRMk) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Ketogenic Diet --- ### [Epilepsy Blog Relay: Sharon on the ketogenic diet and CBD oil](https://livingwellwithepilepsy.com/aboutepilepsy/treatments/ketogenicdiet/sharon-on-the-ketogenic-diet-and-cbd-oil.html) **Published:** June 3, 2018 **Author:** Guest Contributor **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/05/IMG-4839-e1527556498374-150x150.jpg "IMG-4839 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/img-4839)**This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from June 1 to June 30, 2018. Follow along!** #### Sharon’s Story Sharon Ross has a rare type of epilepsy. Though she has experienced seizures, the main impact the condition has on her life is her cognition. According to Sharon, her memory and processing are so poor that one neuropsychologist said it was as though she had a traumatic brain injury. She has three young children, is a committed Jew and is currently on the [ketogenic diet](https://livingwellwithepilepsy.com/2013/epilepsy-news/ketogenic-diet.html) and taking CBD oil to treat her epilepsy. #### About Sharon’s blog [Sharon’s blog](https://sharonrossblog.com/) started almost two years ago when she was stuck in a room and wasn’t allowed to go out for five days whilst neurologists watched and measured her seizure activity during video-telemetry. Her posts tell the story of her journey to find an effective treatment but she also likes to muse about parenthood, mental health and faith. Her latest post is entitled ‘[Research Has Shown That Epilepsy Can Be Treated By a High-Fat, Low-Carb Diet. Why Aren’t More Adults Treated This Way?](https://sharonrossblog.com/)‘ --- **NEXT UP:** Be sure to check out the [next post by Rachel](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-participants) at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com). **TWITTER CHAT:** Save the date for the #LivingWellChat on June 30 at 7PM ET. [![epilepsy blog relay](https://livingwellwithepilepsy.com/wp-content/uploads/2018/05/june-2018-social-EBR1-150x150.png "june 2018 social EBR(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-participants/attachment/june-2018-social-ebr1)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our [generous sponsors and partners](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-sponsors-and-partners)! [Participate as a November Blogger ](http://bit.ly/Nov18EBRForm) [Become a November Sponsor ](http://bit.ly/1819EBRMk) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Ketogenic Diet --- ### [Healthy Aging: Nutrition and Epilepsy](https://livingwellwithepilepsy.com/life-with-epilepsy/food/nutrition-and-epilepsy.html) **Published:** September 2, 2022 **Author:** Jessica K. Smith **Excerpt:** When it comes to nutrition and epilepsy, well, my comfort food is pizza. But now I have epilepsy, cancer, heart disease, & alzheimer's hanging over me it can't hurt to look into eating a little healthier. **Content:** [![](//ws-na.amazon-adsystem.com/widgets/q?_encoding=UTF8&ASIN=1647398185&Format=_SL250_&ID=AsinImage&MarketPlace=US&ServiceVersion=20070822&WS=1&tag=livingwell070-20&language=en_US)](https://www.amazon.com/MIND-Diet-Beginners-Recipes-Kickstart/dp/1647398185?crid=1XNC2ESG1OJF6&keywords=mind+diet+beginners+recipes&qid=1649896511&sprefix=mind+diet+beginners+recipes%2Caps%2C82&sr=8-1&linkCode=li3&tag=livingwell070-20&linkId=162685ef8d0e1e14517a537e18b09607&language=en_US&ref_=as_li_ss_il)When it comes to nutrition and epilepsy well, my comfort food is pizza. And those of you who know me personally know I will never turn down a good (or even a bad) whiskey when offered one. I am the furthest thing from the model when it comes to eating habits. But now that I’m not only living with epilepsy but also have cancer (my own), heart disease (my dad’s), and alzheimers disease (my mom’s) hanging over my head. So, it can’t hurt to look into eating a little healthier. That said, I have looked into the DASH diet and the Mediterranean diets, both of which I will explain further below. In my research I have discovered the MIND diet combines the best elements of the two. #### DASH Diet According to the [Mayo Clinic, DASH stands for Dietary Approaches to Stop Hypertension](https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/dash-diet/art-20048456). The DASH diet is a healthy-eating plan designed to help treat or prevent high blood pressure (hypertension). The DASH diet includes foods that are rich in potassium, calcium and magnesium. These nutrients help control blood pressure. The diet limits foods that are high in sodium, saturated fat and added sugars. Studies have shown that the DASH diet can lower blood pressure in as little as two weeks. The diet can also lower low-density lipoprotein (LDL or “bad”) cholesterol levels in the blood. High blood pressure and high LDL cholesterol levels are two major risk factors for heart disease and stroke. The foods at the center of the DASH diet are naturally low in sodium. So just by following the DASH diet, you’re likely to lower your intake of sodium. You can further reduce sodium by: - Using sodium-free spices or flavorings instead of salt - Not adding salt when cooking rice, pasta or hot cereal - Choosing plain fresh, frozen or canned vegetables - Choosing fresh or frozen skinless poultry, fish, and lean cuts of meat - Reading food labels and choosing low-sodium or no-salt-added options As you cut back on processed, high-sodium foods, you may notice that food tastes different. It may take time for your palate to adjust. But once it does, you may find you prefer the DASH way of eating. #### Mediterranean Diet According to the [Harvard TH Chan School of Public Health, the Mediterranean Diet](https://www.hsph.harvard.edu/nutritionsource/healthy-weight/diet-reviews/mediterranean-diet/) is a primarily plant-based eating plan that includes daily intake of whole grains, olive oil, fruits, vegetables, beans and other legumes, nuts, herbs, and spices. Other foods like animal proteins are eaten in smaller quantities, with the preferred animal protein being fish and seafood. Although the pyramid shape suggests the proportion of foods to eat (e.g., eat more fruits and vegetables and less dairy foods), it does not specify portion sizes or specific amounts. It is up to the individual to decide exactly how much food to eat at each meal, as this will vary by physical activity and body size. There are additional points that make this eating plan unique: - An emphasis on [healthy fats](https://www.hsph.harvard.edu/nutritionsource/types-of-fat/). Olive oil is recommended as the primary added fat, replacing other oils and fats (butter, margarine). Other foods naturally containing healthful fats are highlighted, such as avocados, nuts, and oily fish like salmon and sardines; among these, walnuts and fish are high in omega-3 fatty acids. - Choosing fish as the preferred animal protein at least twice weekly and other animal proteins of poultry, eggs, and dairy (cheese or yogurt) in smaller portions either daily or a few times a week. Red meat is limited to a few times per month. - Choosing water as the main daily beverage, but allowing a moderate intake of wine with meals, about one to two glasses a day for men and one glass a day for women. - Stressing daily physical activity through enjoyable activities. #### MIND Diet According to the Rush University researchers who developed the MIND Diet, it could significantly lower a person’s risk of developing Alzheimer’s disease, even if the diet is not meticulously followed. This finding was published in the journal *Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association.* Rush nutritional epidemiologist [Martha Clare Morris, ScD](https://www.amazon.com/Diet-for-MIND-Martha-Clare-Morris-audiobook/dp/B077PJT1FP/ref=sr_1_1?crid=G6G52ZVFQPZR&keywords=martha+clare+morris&qid=1649897140&sprefix=clare+morris%2Caps%2C89&sr=8-1), and colleagues developed the “Mediterranean-DASH Intervention for Neurodegenerative Delay” (MIND) diet. The study shows that the MIND diet lowered the risk of AD by as much as 53 percent in participants who adhered to the diet rigorously, and by about 35 percent in those who followed it moderately well. “One of the more exciting things about this is that people who adhered even moderately to the MIND diet had a reduction in their risk for AD,” said Morris, a Rush professor, assistant provost for Community Research, and director of Nutrition and Nutritional Epidemiology. Here’s the book by Martha Clare Morris, ScD: [![](//ws-na.amazon-adsystem.com/widgets/q?_encoding=UTF8&ASIN=B077PJT1FP&Format=_SL250_&ID=AsinImage&MarketPlace=US&ServiceVersion=20070822&WS=1&tag=livingwell070-20&language=en_US)](https://www.amazon.com/Diet-for-MIND-Martha-Clare-Morris-audiobook/dp/B077PJT1FP?crid=GV0VEVCC1O4R&keywords=mind+diet&qid=1649898976&s=audible&sprefix=mind+diet+%2Caudible%2C62&sr=1-1&linkCode=li3&tag=livingwell070-20&linkId=8acc003fabddf4bc0e4a897b5e3d023c&language=en_US&ref_=as_li_ss_il)![](https://ir-na.amazon-adsystem.com/e/ir?t=livingwell070-20&language=en_US&l=li3&o=1&a=B077PJT1FP) #### My next steps Considering my risk for Heart disease and Alzheimer’s (to say nothing of cancer) it’s no surprise I began looking more into the MIND diet. I found the website [Healthy Toast](https://www.thehealthytoast.com/) and tried out a few recipes and loved them. Now I’m ready to buy the [Mind Diet for Beginners](https://www.amazon.com/MIND-Diet-Beginners-Recipes-Kickstart/dp/1647398185/ref=sr_1_1?crid=MLCLYN6QTXGH&keywords=kelli+mcgrane&qid=1649897233&s=audible&sprefix=kelli+mcgrane%2Caudible%2C74&sr=1-1-catcorr) cookbook by the founder of Healthy Toast. If you decide to try it out let me know how it goes! If you are interested in the cookbook too here’s the link: [![](//ws-na.amazon-adsystem.com/widgets/q?_encoding=UTF8&ASIN=1647398185&Format=_SL250_&ID=AsinImage&MarketPlace=US&ServiceVersion=20070822&WS=1&tag=livingwell070-20&language=en_US)](https://www.amazon.com/MIND-Diet-Beginners-Recipes-Kickstart/dp/1647398185?crid=MLCLYN6QTXGH&keywords=kelli+mcgrane&qid=1649897233&s=audible&sprefix=kelli+mcgrane%2Caudible%2C74&sr=1-1-catcorr&linkCode=li3&tag=livingwell070-20&linkId=47baf14d441a82ff2c74407563db1889&language=en_US&ref_=as_li_ss_il)![](https://ir-na.amazon-adsystem.com/e/ir?t=livingwell070-20&language=en_US&l=li3&o=1&a=1647398185) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Food **Tags:** food and epilepsy, healthy aging --- ### [Epilepsy Blog Relay: 5 Tips to Keep Constipation Away](https://livingwellwithepilepsy.com/life-with-epilepsy/food/5-tips-to-keep-constipation-away.html) **Published:** June 11, 2018 **Author:** Jessica K. Smith **Content:** **[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/06/IMG_6487-e1528651368251-300x257.jpg "IMG_6487 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/life-with-epilepsy/food-epilepsy/5-tips-to-keep-constipation-away.html/attachment/img_6487)This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from June 1 to June 30, 2018. Follow along!** #### Getting real about constipation I’ve been on medication to manage my epilepsy for more than 30 years. On Living Well With Epilepsy we have talked about some of the [side effects](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/living-with-side-effects.html) of epilepsy medications, including sleepiness, dizzyness, forgetfulness and others. But we haven’t really addressed one that is pretty common: constipation. It’s no surprise that taking a ton of medication every day for 30 years would make for a sensitive tummy. For starters, I have to be pretty careful about what I eat and over the years I have had found some things work better than others for me. So, I thought I would share a few ways I have learned to avoid the ucky feeling in my belly. **A few things to remember:** *These are tips that work for me. If you try any of the products or suggestions below, they are only my personal experience. I am not a doctor and if you have concerns you should speak to your physician. Also note, Living Well With Epilepsy has not been paid or provided with free product to endorse the products below.* **Here are my five tips to help manage constipation.** #### Try some tea To get things moving, I use Traditional Medicinals Smooth Move® tea. As they recommend on the box, I generally take the tea at night. I don’t want to end up out somewhere and find I have to go with no bathroom in sight. Also I prefer to add milk because it makes the tea a little sweeter without adding any sugar. The tea usually works for me within 12 hours. I try to keep the tea in the house so I can have it once or twice a week. This literally moves things along for me.[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/06/IMG_6358-640x640.jpg "IMG_6358 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/life-with-epilepsy/food-epilepsy/5-tips-to-keep-constipation-away.html/attachment/img_6358) **Related: [Four top side effects and how to deal with them](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/jun-18-ebr-posts/living-with-side-effects.html)** #### Start the day with yogurt and flax meal I have been having yogurt every morning for a while now because my medication affects calcium absorption. Basically I need to get calcium any way I can. We recently cut way back on carbs so I didn’t have granola in the house and was casting around for something to put in my yogurt. For whatever reason, we had Bob’s Red Mill flax meal in the cabinets. I dumped some of it in my yogurt along with honey and blueberries and was surprised by how much I liked it! Now I try to have it once a day. I was also surprised to find the flax meal has a laxative properties similar to the senna in the tea. If I keep up with the flax seed I am able to stay on a pretty regular schedule which is not common for me! [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/06/IMG_6357-640x480.jpg "IMG_6357 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/life-with-epilepsy/food-epilepsy/5-tips-to-keep-constipation-away.html/attachment/img_6357) The Recipe #### Flax Seed Meal Yogurt - 1/2 cup vanilla greek yogurt - 2 tablespoons flax seed meal - 1 tablespoon honey - 1/2 cup blueberries (or whatever fruit you prefer) #### Eat some leafy greens Kale and other dark leafy greens are great for moving the yuck through your system. And if you are not sure how to work kale into your diet there are some great recipes out there. Recently we started to try cauliflower rice and I was surprised to find the combo of cauliflower rice and kale is delicious! BTW I do not like cauliflower steamed. But I love it riced – who knew? Other greens include spinach which also has lots of calcium. I’ve become very friendly with this one too. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/06/IMG_6495-640x480.jpg "IMG_6495 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/img_6495) #### Drink some water We have all been told to drink more water. I have to really remind myself to drink water. This is not good because it is work for my system to retain water. The least I could do is replenish it every now and again. I have considered setting an alarm to remind myself to drink a glass of water every two hours. I haven’t started doing it but [Rachel’s article on side effects](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/jun-18-ebr-posts/living-with-side-effects.html) made me seriously consider it! [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/06/IMG_6499-640x640.jpg "IMG_6499 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/life-with-epilepsy/food-epilepsy/5-tips-to-keep-constipation-away.html/attachment/img_6499) **Related: [Emily on Smart Monitoring her Epilepsy](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/jun-18-ebr-posts/smart-monitoring-epilepsy-and-seizure-alert-systems.html)** #### Get a little exercise I have to be honest, I am not great about this one. When the weather is nice and my walking buddy is around sure I’m up for a few miles of walking and chatting. But the rest of the time I don’t make it enough of a priority. This is not good since I need to work on strength building exercises to counteract the calcium deficiencies but that’s a different article. Anyways, I find when I do go for a walk or practice yoga then I am less likely to be constipated. **Related:** [**How running and a keto lifestyle keeps seizures at bay**](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/jun-18-ebr-posts/epilepsy-blog-relay-how-running-and-a-keto-lifestyle-keeps-seizures-at-bay.html) #### You aren’t the only one Sometimes, especially when you have been in the bathroom for a half an hour, it can feel like you are the only one suffering like this. But I swear you are not alone. If you need proof just take a quick peek at the number of articles on the topic of constipation! If you guys have other suggestions please comment here! We could all use a few new ideas every now and then. **Disclaimer:** *These are tips that work for me. If you try any of the products or suggestions mentioned in the article, remember they are only suggestions from my personal experience. I am not a doctor and if you have questions or concerns you should speak to your personal physician. Also note, Living Well With Epilepsy has not been compensated in any way or provided with free product to endorse the products mentioned here.* --- **NEXT UP:** Be sure to check out the next post by Maureen at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com). **TWITTER CHAT:** Save the date for the #LivingWellChat on June 30 at 7PM ET. [![epilepsy blog relay](https://livingwellwithepilepsy.com/wp-content/uploads/2018/05/june-2018-social-EBR1-150x150.png "june 2018 social EBR(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-participants/attachment/june-2018-social-ebr1)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our [generous sponsors and partners](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-sponsors-and-partners)! [Participate as a November Blogger ](http://bit.ly/Nov18EBRForm) [Become a November Sponsor ](http://bit.ly/1819EBRMk) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Food --- ### [Epilepsy Blog Relay™: My brand new adventure](https://livingwellwithepilepsy.com/life-with-epilepsy/travel/brand-new-adventure.html) **Published:** November 19, 2016 **Author:** Maureen Knorr **Content:** [![maureen2](http://livingwellwithepilepsy.com/wp-content/uploads/2016/11/maureen2-225x300.jpg "maureen2 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2016/blog-relay/brand-new-adventure.html/attachment/maureen2)***This post is part of the [Epilepsy Blog Relay™](http://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-nov2016participants) which will run from November 1 through November 30, 2016. Follow along!*** #### Maureen’s Story In July, I went through the most fulfilling and rewarding experience of my life. All mothers out there know the experience. My beautiful daughter, Samantha, was born on July 16th, 10:50am, happy and healthy, and immediately filled my heart full of joy. After 9 months of a carefully managed pregnancy, and 5 months before that of slowly transitioning my epilepsy medication, I could finally say, “I did it. And I knew I could do it.” Other mothers had warned me that I would be tired and spread thin. Their predictions were, of course, spot on; I was exhausted. Thankfully, their warnings also came with tips and tricks like “sleep when baby sleeps”, “a stroller walk always calms a crying baby”, and many, many more. But there was no advice, tips, or tricks that prepared me to be a mother with a seizure disorder. Now, my world has changed in so many ways, including how I am living with epilepsy. What I’ve written about in the past, is my adventurous spirit inside saying that epilepsy can’t hold me back. But now, I feel a very sudden change in the risks I take. At first, everyday ordinary things were overwhelming. I was anxious when holding or carrying my daughter. It’s such a natural thing for a mother to embrace her child, but I was afraid I would drop her. The “stroller walk” that all seasoned parents recommend for calming a crying baby was terrifying to me. I couldn’t help but imagine having a little jerk and knocking the stroller over. Or even worse, it rolling down the hill unmanned. Everything felt dangerous knowing that at any moment I could have a seizure. But I knew I had to pull myself together as our first trip was around the corner. #### [![maureen1](http://livingwellwithepilepsy.com/wp-content/uploads/2016/11/maureen1-225x300.jpg "maureen1 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2016/blog-relay/brand-new-adventure.html/attachment/maureen1)Our First Adventure I wish I could say I confidently navigated my way through the airport for my daughters first flight; daughter in arms and boarding pass in pocket! But truthfully I was a wimp with my internal monologue of “don’t have a seizure” on repeat. It was my husband that carried her, changed her, and burped her while I stood on the sidelines. The following day would be different as my husband would be busy with the wedding party. It would be just my daughter and me for the day. #### Just us We were staying at Fair Hills Resort in Minnesota. We had a small cabin on the far end of the lake that was secluded and quiet. When my husband left to meet the other groomsmen I had a fleeting thought of “what if I have a seizure” but I quickly pushed that thought aside and filled myself up with all the fun “firsts” my daughter would be able to experience today. I was excited to take her for a long walk on the lake; after all, she’d never seen a lake before! The unpaved trail around the lake wasn’t exactly stroller friendly so I carried my daughter in my arms. I kept a safe distance away from the water and held her tightly to my chest as we embarked on her first walk (ever) around the lake. She was wide-eyed in awe of the towering trees and bright blue sky. Seeing her inquisitive eyes scanning the scenery filled my heart with joy. As we continued walking I spotted a shallow entrance to the lake. I took off my shoes, waded in and slowly dipped my daughters’ toes in the cold water. Her lips pursed and immediately turned into a frown. Immediately after the frown she made a loud squawking noise that could only translate to, “get my toes out of the water!” I lifted her to my chest and used my shirt to dry her toes, and slowly made my way to the trail. As I was putting my shoes back on my wet feet I realized that I had always been frightened to be around water alone. But here I was wading in to dunk my daughter’s toes! Her sense of wonder had boosted my confidence. #### Every day a new adventure[![maureen-3](http://livingwellwithepilepsy.com/wp-content/uploads/2016/11/maureen-3-225x300.jpg "maureen-3 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2016/blog-relay/brand-new-adventure.html/attachment/maureen-3) My experience in Minnesota made me realize that as a protective mother I feel hesitant at times, but also recognize that now I have a greater responsibility to not let epilepsy hold me back. Seeing the world through my daughter’s eyes makes each and every day an adventure. She makes me appreciate the small things in life like going for a walk, feeling the rain on my skin, and even just examining the colors of an apple. The spirit inside of me has only grown to take into account instilling this sense of exploration & curiosity of life into my daughter. Upon returning from this vacation, I immediately printed out a passport application and went to Walgreens to have my daughter’s photo taken. After all, it’s time to plan our next adventure. --- ***[![](http://livingwellwithepilepsy.com/wp-content/uploads/2016/10/IMG_1515-e1477762323364-150x150.jpg "img_1515 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/portfolio/nov20-16/attachment/img_1515)NEXT UP:*** *Be sure to check out the post tomorrow by Jewell on [liveoutloud4epilepsy.org](http://livingwellwithepilepsy.com/portfolio/liveoutloud4epilepsy.org). For the full schedule of bloggers visit*[ *the Participants gallery.* ](http://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-nov2016participants) ![author avatar](https://secure.gravatar.com/avatar/21dd1cb76084b50fb7cccc4f2b6135cd43d1c082e5b039d6d4a99606803dc749?s=300&d=mm&r=g) Maureen Knorr I’m Maureen, and I have epilepsy. You’re probably reading this because either you have epilepsy, or you love someone that has epilepsy. Whatever sparked your curiosity, I am happy to be sharing my experiences with you. From having seizures in foreign countries to begging pharmacists that don’t speak English for medication, I can definitely say that it's been an interesting journey. Hopefully reading about my ups and downs, and my everyday and not so everyday adventures will inspire you too! Welcome to my life of living well with epilepsy! [See Full Bio](https://livingwellwithepilepsy.com/author/maureen-knorr) [ ](https://livingwellwithepilepsy.com/author/maureen-knorr) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://maureenknorr) **Categories:** Travel **Tags:** Epilepsy Blog Relay, Nov 16 EBR Posts, Pregnancy, Traveling --- ### [Living Well Outside: July will be all about getting outside](https://livingwellwithepilepsy.com/life-with-epilepsy/living-well-outside.html) **Published:** July 2, 2018 **Author:** Jessica K. Smith **Excerpt:** Throughout the month of July, we'll be making time to get outside. All month we will be celebrating the ways you are #livingwelloutside. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/07/livingwelloutside_twitter1.jpg "#livingwelloutside_twitter(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/home/attachment/livingwelloutside_twitter1) Throughout the month of July, we’ll be making time to get outside. After a busy Epilepsy Blog Relay month it’s time to get some fresh air. All month we will be celebrating the ways you are **\#livingwelloutside**. We’ll be sharing stories of fishing, trips to the beach, and maybe walks with the dog. #### Your stories We want to share your stories too. How do you deal with the bright summer sun if you have [TLE](https://livingwellwithepilepsy.com/2018/guest-posts/poetry-to-cope-with-adversity-and-a-life-with-tle.html) or Photosensitive epilepsy? How do you make travel possible when your [child has LGS](https://livingwellwithepilepsy.com/2018/aboutepilepsy/family-pushing-boundaries-of-lgs.html)? How do you get to your summer desination when you don’t have your driver’s license? You can [share your stories](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) of #livingwelloutside on livingwellwithepilepsy.com. [Share your story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) #### Get Social Follow our hashtag #livingwelloutside on [Instagram](https://www.instagram.com/livingwellwithepilepsy/), [Facebook](https://www.facebook.com/livingwellwithepilepsy/) and [Twitter](https://twitter.com/jessicaksmith). But more importantly use it yourself when you are posting your amazing outdoor pics. Or even just what you have to do to prepare to go outside (sunscreen, hat, etc.). Hope to see you #livingwelloutside! ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Life With Epilepsy **Tags:** #livingwelloutside, outside --- ### [Living Well Outside: Four reasons to take a tech free vacation](https://livingwellwithepilepsy.com/life-with-epilepsy/travel/tech-free-unplugged-vacation-idea.html) **Published:** July 11, 2018 **Author:** Rachel Ehrhardt **Excerpt:** Through fly fishing I have discovered 4 great reasons to take a tech free vacation. Here are a few benefits from going tech free every now and then when you are living with epilepsy. **Content:** Often we get so wrapped up in the hustle and bustle of day to day lives that we forget to enjoy the moment. As a person with epilepsy (or any chronic illness) one of the biggest ways that we can give our health a boost is by taking a little time each day for ourselves. The theme this month is “[Living Well Outside](https://livingwellwithepilepsy.com/2018/livingwell/living-well-outside.html)”, so It only took me a few seconds to decide I would write about fishing and the art of disconnecting. When I first started dating my fiancé, I was introduced to his biggest passion (next to me) — fishing. I realized that if I wanted to spend time with him on the weekends, I needed to get myself a fly rod and a set of boots. When I started fishing I only hoped to find an appreciation for a hobby that my guy enjoyed. Little did I know that I would not only fall in love with my guy, but with fly fishing as well. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/07/IMG_0203-640x369.jpeg "IMG_0203 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/life-with-epilepsy/travel/tech-free-unplugged-vacation-idea.html/attachment/img_0203) We started out going to a creek very near to my parent’s house one weekend early into our relationship. We shared rods, and I brought lemonade and a book. I expected to sit and read my book most of the day. Instead, Casey began showing me how to cast and bait. Before I knew it, I discovered I loved the atmosphere. There is something about being out on the water without your phone (dare I say it, COMMUNICATING in person), that can completely revive and change your state of mind. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/07/rachel-fishing1-640x694.jpg "rachel fishing1 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/life-with-epilepsy/travel/tech-free-unplugged-vacation-idea.html/attachment/rachel-fishing1) I started doing some research about why people feel so great when they are on the water. I found so many articles about the positive effect of mental health in those that fish. According to the [Harvard School Department of Neurology](http://neuro.hms.harvard.edu/harvard-mahoney-neuroscience-institute/brain-newsletter/and-brain-series/fly-fishing-and-brain), there is a correlation between the two. There are a variety of different positive effects from going fishing. Here are a few I have personally experienced: #### Stress reduction According to the article, fishing reduces stress levels. In order for people to deal with stressful situations they must also have a relaxation response or meditation. One of the positive affects of fishing is that of allowing a person to go into that state of mindfulness. When you are doing the same movements over and over you are allowing your body can help relax and distress the muscles causing you to go into a state of rest. #### Digital Detox This one is my personal favorite, fishing can help you unplug from the world. No matter the location that you are fishing in, it is away from constantly looking at your phone, social media, or emails. When you are no longer focused on your communication device, you are more likely to rest your eyes, fish, and decompress from the stress that your body is battling. I cannot guarantee that it will be an easy transition into being away from your phone. (They call it a digital detox for a reason!) You just need to give it a chance while you are forcing yourself to be away from constant contact. I promise it will get easier as you head out on the water and get wrapped up in fishing rather than what is going on in the world. #### Time with a loved one Fishing allows for uninterrupted bonding time. Going fishing with your spouse or friend will give you a chance to have one on one time with them that you might not have normally. When you are out on the water and it is just you and them, and it can completely open up the lines of communication. You may even learn something that you would never have known about the other person. Fishing has allowed Casey and I to communicate fully our intentions, problems, issues straight up and in the open because we are with just each other on a river for hours at a time. I have grown to love that time with just us on Saturday afternoons without my phone. #### An excuse to travel Another big one for us is that fishing gives you an excuse to travel. Travel is a huge thing for both of us. We love to try new locations, food, and new places to fish. Fishing allows us to travel all over the world and to get away from the negatives of our lives even for a bit and focus on the lake or ocean in front of you instead. At this point we have traveled to: Asheville, Galveston, New Braunfels, Maine, and we will be heading to Key West and Orlando on our honeymoon. Fishing has really allowed us to get out of our comfort zones and see the world. So next time you have a chance, pack a rod, head to a river and go tech free. ![author avatar](https://secure.gravatar.com/avatar/82d406d4460971f22d36968d14d1294a2a0c55c719c5b66a09acb2d2ad3872f2?s=300&d=mm&r=g) Rachel Ehrhardt Rachel Ehrhardt Streelman is from Houston , Texas. She has been a writer and contributor to Living Well with Epilepsy for two years. Rachel has had epilepsy since 9 months old. She comes from a family where her father, sister, and herself all have different forms of epilepsy. Rachel is married to Casey and they have a Cavapoo named Sheldon. [See Full Bio](https://livingwellwithepilepsy.com/author/rachel) [ ](https://livingwellwithepilepsy.com/author/rachel) **Categories:** Travel --- ### [3 tips for taking back your independence without a drivers license](https://livingwellwithepilepsy.com/life-with-epilepsy/taking-back-your-independence-without-a-drivers-license.html) **Published:** July 17, 2021 **Author:** Maureen Knorr **Excerpt:** Maureen shares practical tips on how to take back your independence when you don't have a license. **Content:** ###### We’ve included a few affiliate links in this article. When you buy something using the links in this story, we may earn a small commission. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/08/IMG_7247-300x300.jpg "IMG_7247 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/livingwell/survival-tips-for-no-drivers-license.html/attachment/img_7247)Let’s be honest, epilepsy can feel pretty isolating. Add to that, if your seizures aren’t under control (or you just plain don’t feel safe) then driving is off the table. Thankfully this is where the Internet of Things comes to the rescue. No license, no problem. Here we share 3 easy ways to help you take back your independence. Life with no driver’s license Has [epilepsy](https://livingwellwithepilepsy.com/start-here) ever prevented you from doing the things you love? Or prevented you from doing the simple everyday tasks that all human beings are expected to do? It sure has for me! I felt helpless and confined to my home. Even worse, I was totally dependent on others to do anything that required leaving the house. Thankfully these days there are companies that can help. #### Transportation [**Uber** ](https://www.uber.com/)has not only changed the lives of people in the tech industry, it has changed the lives for people that can’t drive and need an on-demand, reliable service. Remember those days when you called a taxi and an hour later they showed up!? Or sometimes they didn’t show up at all despite you calling 50 times! People of certain age (anyone over 30) remember those days and thank goodness they are behind us! With the Uber app, I can order my “taxi” through my phone and be connected with a driver. I can even see the drivers location on my phone. Uber is one not the only company in this industry, but being a global company it has been the best for me. One night [my flight was delayed](https://livingwellwithepilepsy.com/2016/epilepsy-blog-relay/jun-16-ebr-posts/maureen-finds-peace-despite-her-fears.html) and I arrived to Lyon, France very late. The taxi line was empty, all shuttle services were closed, and the airport was deserted. I opened my uber app and within 10 minutes a person was there to take me to my hotel. He didn’t speak English and I don’t speak French, but all I had to do was enter my hotel address in the app and it showed him where to go. Uber officially broke the language barrier and brought me safely to my hotel. There are several other apps similar to Uber. A few of these are **[Lyft, Curb, Mytaxi, Flywheel, Gett, and EasyTaxi](https://techboomers.com/apps-like-uber)**. Be sure to check to see which app is used most frequently in your area. [What’s your Epilepsy Transportation story? ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) #### Grocery Delivery [**Instacart** ](https://www.instacart.com/)is a grocery delivery service. You can search your favorites grocery stores inventory and add items to your virtual shopping cart. Once you place your order you have the ability to chat with your shopper – a live human being that is handpicking your order! You can add those last minute items you forgot (ice cream!) and provide more details on the items you are ordering, such as wanting overripe bananas. Instacart has even partnered with Costco, [Whole Foods](https://amzn.to/3ksOYUI), Safeway, Sprouts, Bevmo, [Petco,](https://www.petco.com) and other local shops in your neighborhood. My instacart story. Family Thanksgiving was moved last minute to my home. I literally had nothing to prepare a meal. There was no way I was going to push my way through a frenzy of last minute shoppers without my anxiety kicking in. I signed into Instacart and simply added everything I would need. Being a popular shopping week, there were many items that were sold out. My shopper was so patient and helpful by suggesting alternative replacements. My groceries arrived that afternoon and I pulled off my family Thanksgiving! #### Shop for everyday items [**Amazon**](https://amzn.to/3ksOYUI)[**.**](https://www.amazon.com/) Ok, if you haven’t heard of Amazon you must be living on mars. But, have you used it? If shopping is stressful for you, stop doing it. Amazon has everything you need. Books, clothes, household products, diapers, baby gear, and even furniture. They have everything. Amazon has changed lives for those unable to leave their home. People can now order their essentials from the comfort of their own home. If you haven’t checked out Amazon you need to! It is seriously a lifesaver when you aren’t able to drive to a shop. You can even **[get your prescriptions through Amazon now](https://amzn.to/3hKBIsT)**. Amazon acquired PillPack, an online pharmacy that will deliver all your meds packaged into little packs for each day. The team that developed the service is amazing and it can definitely save the trouble of going to the pharmacy! Another alternative is [**Bookshop.org**](https://bookshop.org). It’s a way to support your local indie bookstore AND have your books delivered straight to your house! #### Shop for unique items **[Etsy](https://www.awin1.com/awclick.php?gid=343891&mid=6220&awinaffid=909385&linkid=2220879).** Same goes. Etsy is a great place to find all those unique boutique items that used to require traveling to a new city and going store to store. But now you can just open your computer and find jewelry, home decor, masks, bags, scarves, gifts and more. [What’s your online shopping story? ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) #### Your turn I want to hear from you. How are you taking back your independence? Comment here ![author avatar](https://secure.gravatar.com/avatar/21dd1cb76084b50fb7cccc4f2b6135cd43d1c082e5b039d6d4a99606803dc749?s=300&d=mm&r=g) Maureen Knorr I’m Maureen, and I have epilepsy. You’re probably reading this because either you have epilepsy, or you love someone that has epilepsy. Whatever sparked your curiosity, I am happy to be sharing my experiences with you. From having seizures in foreign countries to begging pharmacists that don’t speak English for medication, I can definitely say that it's been an interesting journey. Hopefully reading about my ups and downs, and my everyday and not so everyday adventures will inspire you too! Welcome to my life of living well with epilepsy! [See Full Bio](https://livingwellwithepilepsy.com/author/maureen-knorr) [ ](https://livingwellwithepilepsy.com/author/maureen-knorr) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://maureenknorr) **Categories:** Life With Epilepsy **Tags:** Amazon, instacart, Internet of Things, Petco, PillPack, Uber, WholeFoods --- ### [8 most valuable (and brutal) life lessons everyone should learn](https://livingwellwithepilepsy.com/life-with-epilepsy/life-lessons-everyone-should-learn.html) **Published:** July 25, 2021 **Author:** Emily Lawrence (Nee Donoghue) **Excerpt:** Sometimes the most valuable life lessons can be the most brutal to learn. Emily reminds us why these lessons are worth it in the end. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/09/life-lessons-photo1.jpg "life lessons photo(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/livingwell/life-lessons-everyone-should-learn.html/attachment/life-lessons-photo1) #### Life Lessons Life has taught me a lot. I have learned a few new things since I was first diagnosed with epilepsy at age 10. Here are my favourite life lessons for you. #### 1) Acceptance I was okay with my initial diagnosis-mainly because I didn’t know what it was, and for me, I didn’t have anything to lose. I was no where near the age of being able to drive, I didn’t drink alcohol and I was still living at home, not working and starting senior school. But as I got older, that is where the diagnosis led me to suddenly live in fear and somewhat denial. My physical and emotional well-being took a turn. It was only once I began to truly accept my life the way it is, that I was able to focus on not just living but learning to thrive despite my diagnosis. To be the change I want to see in this world. #### 2) You are not defined by your conditions A friend of mine who I met at The Young Epilepsy Champions Awards, named Scott Barclay, spoke out and quoted ‘I may have Epilepsy, but it does not have me’ and I have never heard anything so true. We are much more than the conditions we have. We are not defined by our circumstances. I may have seizures but, I am much more than a person with Epilepsy. I haven’t allowed it to stop me from getting the job I worked hard for, I don’t let it keep me indoors with the fear of having a seizure on my outings. I am who I am. --- **Related:** [3 Survival tips for adults without a driver’s license](https://livingwellwithepilepsy.com/2018/livingwell/survival-tips-for-no-drivers-license.html) --- #### 3) Don’t take anything for granted My family member’s lives changed forever when they were told I had Epilepsy, their lives also stopped every time they got a call to say I was in an ambulance from work, or every time they heard a thud at home. I went from being a healthy young girl, sister, daughter, granddaughter, you know- to someone with an uncertain future. My life changed but I didn’t quite realise it. Now, instead, I try my best to treasure each and every moment as the gift it truly is, because you just never know. It’s hard, [some days you can’t really see anything bright](https://livingwellwithepilepsy.com/2017/livingwell/emily-challenges-the-status-quo-of-her-mood.html), but there is always something there. #### 4) You have to let go of your fear of the future A BIG one for me. In order to begin living your present, you have to [let go of the fear of what might come](https://livingwellwithepilepsy.com/2018/livingwell/travel/tech-free-unplugged-vacation-idea.html). Fear is debilitating. But why worry about something that has not happened yet, something that might not ever happen? Because it will only stop you from enjoying what is happening here and now. #### 5) Live Life I may not have control over how many seizures I have had over the years, or when my next one might strike, but how I face this challenge is in my control. A colleague of mine took me aside a few days ago and told me, if you look at the limitations that Epilepsy can give you, your quality of life will suffer. She told me to focus on my abilities , my ability to smile, to laugh, to make others laugh and to work hard, my life will brighten up. Focus on what your condition has given you the opportunities of-for example, I have met hundreds of amazing individuals through my Epilepsy. I was able to create my Epilepsy support group with my friend Gurvinder, which I never could’ve done if it wasn’t for having Epilepsy myself. #### 6) Always maintain hope for the future Having hope is one of the strongest things you can have. It brightens the dullest of days, and it allows you to power forward to what great things will come. Hope of a cure, and of better research, of understanding. #### 7) The lesson of life purpose We all have a life purpose , sometimes it takes a while to discover it! I found a few years ago that writing, speaking and working within health is what I am here for-for now! When we act on our talents, we notice that success comes more easily. I never knew writing was what I am here for until my first piece of poetry ever got published. I never knew Piano was my thing until I learned a song by ear. When you [find your purpose](https://livingwellwithepilepsy.com/2016/epilepsy-blog-relay/its-who-i-am.html) you will know it-because you will LOVE what you do. You will no longer regard work as a job. --- **Related:** [Alison’s Story: When a seizure happens at work](https://livingwellwithepilepsy.com/2018/livingwell/work/when-a-seizure-happens-at-work.html) --- #### 8) Everything happens for a reason [Find meaning](https://livingwellwithepilepsy.com/2018/guest-posts/poetry-to-cope-with-adversity-and-a-life-with-tle.html) in your challenge. I believe that there are life lessons in every circumstance joyous or otherwise. Obstacles present themselves for a reason and the experiences that these difficulties bring, allow us to evolve. ***“You can’t go back and change the beginning, but you can start where you are and change the ending.” ―C. S. Lewis*** ![author avatar](https://secure.gravatar.com/avatar/5523d28ae8bbaedc9d082d51d29393ca490379cd31464b99ab3c7d50a49362ac?s=300&d=mm&r=g) Emily Lawrence (Nee Donoghue) 25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England. Emily's Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10. Based in UK. [See Full Bio](https://livingwellwithepilepsy.com/author/emilyd) [ ](https://livingwellwithepilepsy.com/author/emilyd) **Categories:** Life With Epilepsy **Tags:** life lessons, living with epilepsy, tips --- ### [Epilepsy Blog Relay: Change of Scenery Can Make a World of Difference](https://livingwellwithepilepsy.com/epilepsy-stories/change-of-scenery-makes-world-of-difference.html) **Published:** April 5, 2022 **Author:** Lauren Brunell **Excerpt:** Lauren shares how a change of scenery made a world of difference as she adjusted to her new diagnosis of epilepsy. **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/laurenb.jpg "laurenb – Living Well With Epilepsy")How a change of scenery made a world of difference as one woman adjusted to her new diagnosis of epilepsy. This story is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay). #### The Date I was 24 years-old spending my Saturday at local surf break with Josh, a lifeguard who would have prospered on the show [Bay Watch](https://www.amazon.com/Baywatch-Dwayne-Johnson/dp/B07171V8FJ/ref=sr_1_1?crid=1NSWJO2FG7NDD&keywords=baywatch+movie&qid=1648933325&sprefix=baywatch+movie%2Caps%2C206&sr=8-1). (Beautiful abs – I hope he reads this) It was another sunny day in Pacific Beach, where I had spent the last few years teaching surf classes and living with my best friends. This was our third date, and I was trying to keep my cool. The night before, I’d gone out drinking, and I felt especially strange that morning. It felt like the world was spinning in all sorts of directions, and I couldn’t come up with the words I wanted to say. The coffee that morning didn’t seem to sit right either. I’d been drinking coffee all through college, but it seemed to randomly give me such a high that I felt like my head was above the clouds or on another planet altogether. As this high began to wear off, I could feel my brain vibrating and losing the ability to concentrate. But I would never tell anyone that. I was addicted to caffeine. No one would understand the feeling, and even doctors had attributed it to stress. #### **Life on track** Some background: at this point, my life was going according to the timetable I’d set for myself at age 18: 1) Bachelor’s degree at [San Diego State University](https://www.sdsu.edu/), 2) English Teaching Credential program, and 3) travel around the world teaching English as a Second Language. I was a short while away from moving to China, where I’d accepted a job teaching ESL near Hong Kong. My dreams were finally turning into reality, and I felt on top of the world. Not to mention that I was about to surf with a hot lifeguard. #### **In and out of consciousness** Wetsuit on, board in hand, we started walking towards the water until that strange feeling arose. I felt my brain vibrate, and my vision began to blur, so I put my board down on the sand and sat alongside it. I don’t remember what happened next, but according to Josh, the seizure lasted 10-15 minutes. I woke up on the beach with no memory of where I was and horrible pain in my right shoulder. During this first Grand Mal seizure, I had repeatedly hit my shoulder so hard on the sand that I fractured my rotator cuff. The next thing I remember is crying deliriously as Josh, and some EMTs helped me into the ambulance. I still remember the horrified look on one of the EMTs’ faces when I woke up on the way to the hospital screaming and demanding they tell me where I was and why my shoulder hurt so badly. I woke after surgery was performed on my shoulder. The doctor told me what happened and that I most likely have [Epilepsy](https://livingwellwithepilepsy.com/epilepsy) and would need an [EEG](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/alison-shares-her-experience-with-a-16-day-stereo-eeg-stay.html). With a one-track mind, I asked the doctor the first thing that came to me: Will I surf again? His answer was no. I soon realized I would no longer be going to China, either. #### **When old friends don’t show up** Surprisingly, the most challenging part of it all was learning that my best friends/roommates, one whom I’d known since kindergarten, weren’t going to be part of my timeline any longer, either. About three days after my seizure, I was elated to finally hear from them—as Josh had told them everything that had happened on our date. What I heard on the phone changed my view of our friendship. They were calling to let me know to get my “sh\*\*” out of the apartment. “Your food in the refrigerator stinks, and one of your suitcases is still in our living room.” My brain wasn’t working very well at the time, so it was hard to respond to my friends. I just listened and said, “ok.” Shortly after that conversation, my mother moved my stuff out of the apartment. I haven’t heard from them since. This flipped my world upside-down more than anything. How many of my friendships were like this? Did I make bad judgments of people in general? Looking back, what I experienced was heartbreak leading to social anxiety. I didn’t spend much time with other women my age for several years following—except for Mari. #### **It’s time to make new friends** I met Mari in a painting class. While moving back in with my parents, testing out debilitating drugs, and being unable to drive, my mother enrolled me in this class at a local community college. Mari had just moved to CA from Venezuela, and her life had recently been flipped upside-down as well. I slowly opened up about my diagnosis. I helped her with her English while she helped me with my paintings and took me to walk her dogs. She showed me that it wasn’t women I needed to avoid; it was unempathetic people. #### **A change of scenery** Fast forward six months, and I found an alternative route for the timeline I had made for my mid-20’s. I accepted a job teaching ESL to refugees in Seattle, Washington. While I was still having petit mal seizures and testing out different medications, I had a tough time putting my life on pause. With the support of my parents, I packed up my things and moved to WA for ten months. It turned out to be the best thing I’ve ever done. Because I’ve always been an ocean girl, I thought that I was moving to Seattle for the job, not for the environment. Boy, was I wrong! After a few boring weekends, I found hiking groups on the Meetup app. Members would often offer to pick me up at 5am and lend me their snow gear to climb different mountains throughout the state. Of course, I only joined on weekends when I felt well (no dizziness or “brain vibrations”). But I must admit, the bad weeks made days that I climbed to the top of mountains in the middle of nowhere in deep snow feel like miracles. #### **On showing up for yourself** It wasn’t all fun and games. According to my seizure journal, I was having episodes every couple of weeks. I did another at-home EEG and often felt very alone during weeks that I was suddenly having seizures again. The early sunsets after daylight savings DID NOT help with this sadness. Out of loneliness and desperation, I downloaded the [Bumble dating app](https://bumble.com/). Believe it or not, my first date was a miracle. I met Christian at a coffee shop on a Sunday. We made small talk, and at some point, he asked me why I couldn’t drive. I panicked inside. Do I tell men I’m dating that I have Epilepsy? I am such a terrible liar, so I just told him. It turned out Christian had just moved back home to WA after having a Grand Mal seizure in Spain, where he’d been teaching ESL for over two years. I’m not sure if there’s a God, but if there is, God was letting me know that I should be honest about my diagnosis when it comes up, even in my dating life. Through my time in WA, I proved to myself that even with my new diagnosis, I could be the independent, spontaneous woman I want to be. I slowly dissolved the shame I had felt in my diagnosis: In the beginning, I honestly felt like my Epilepsy must somehow be my fault. I gradually accepted that I would not be able to [live in other countries](https://livingwellwithepilepsy.com/2015/traveling-with-epilepsy/a-seizure-in-buenos-aires.html) until I better understood my mind and body. And that I still have a long way to go. #### **Life on a new track** Two years later and I am back in San Diego with another roommate. I bike to work at my part-time job at an Elementary School, eat too many tacos, and I’m even back to surfing. While my life did not go as planned, every day I’m seizure-free and feel good is a new opportunity to make more memories. I understand that many people with Epilepsy have daily seizures and still find a way to keep some inner peace. When I am feeling down, I think about these strong people. Everything is relative, and every day is different. This may sound obvious but understanding it and accepting it deep down is the only way to stay patient as you get closer to a combo of meds that work for you. Don’t miss tomorrow’s story in the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay). ![author avatar](https://secure.gravatar.com/avatar/d223333747679823a3fb6c602ff61876fd692ae1078795964827b69de2a2648c?s=300&d=mm&r=g) Lauren Brunell [See Full Bio](https://livingwellwithepilepsy.com/author/lauren) [ ](https://livingwellwithepilepsy.com/author/lauren) **Categories:** Epilepsy Stories **Tags:** College, Grand Mal, newly diagnosed, sports, Travel --- ### [Epilepsy Blog Relay: On life changing decisions and brain surgery](https://livingwellwithepilepsy.com/aboutepilepsy/treatments/epilepsy-blog-relay-life-changing-decisions.html) **Published:** April 28, 2022 **Author:** Guest Contributor **Excerpt:** Karen on brain surgery for epilepsy: My life was going well, epilepsy didn’t stop me doing anything and I thought why take the chance? **Content:** #### ***[![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/02/Image.jpg "Image – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/portfolio/mar-3-karen-conabeare/attachment/image-21)***Karen’s Story I was diagnosed around the age of 11. Since then, I haven’t seen epilepsy as an illness; it is just a part of me. I am very lucky my grand mal seizures are controlled by my medication as long as I don’t miss a dose. My epilepsy has never stopped me swimming, sailing, cliff jumping, back packing, moving to Canada and building my own business; if I could I would. Until recently. ***This story is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay).*** I feel lucky to have the support of my family and friends. Over time my epilepsy has changed, always with the grand mals then adding tonic, clonic, atonic and even hallucinations into the mix. At the present time, it is absence seizures. For years, my neurologist has suggested I might be a candidate for an operation. I even had testing at the EMU Unit (the Epilepsy Monitoring Unit) at Toronto Western Hospital. There I was monitored for several days through video and EEG recordings. They were looking for the source of my seizures. The outcome showed their initial prediction of 80% success was now 50-60%. At that time, they felt the epilepsy was moving between two parts of my brain. My life was going well, epilepsy didn’t stop me doing anything and I thought why take the chance? I was lucky, with grand mals well under control I was only suffering absence seizures. A hospitalization for seizure clusters a couple of years ago has changed things. I now find myself having increasingly grouped absence seizures and a newer problem of cognition/memory problems. I am hardly swimming; ocean sailing is a worry and my confidence has gone when travelling alone – no more cliff jumping; I don’t even climb ladders. I find I have days struggling with cognition too (not great in business). Adding all this up together, the once fearless woman felt that maybe it is time to reconsider that operation. #### Brain surgery So, I went for a MEG Test (Magnetoencephalography Test). This involved not sleeping the night before, being wired up, and sleeping in a room where they measured my brain’s activity to find out more about the location of the activity in my brain. They matched the results with an earlier Functional MRI from years prior. The team at Toronto Western Hospital are confident that I am a good candidate for a Lesionectomy; with this, the surgeon will go in to remove damaged tissue from the brain. This tissue was scarred before I was born. I have seen the image of my scar (lesion), it is so small! A smudge on the screen. Unbelievable, that a pesky little white smudge has caused my seizures throughout my life. On my last birthday (wow, 43 years old), I promised myself to make things better, either by drug changes or by operation. Now it is time to decide, as my epilepsy changes with my age who knows what the future will bring if I don’t make a change. Maybe, with the operation, I can even get control over the grand mals, wouldn’t that be nice? I am a positive person, I am off for another MRI before this blog is published to confirm these findings. Am I scared? Is it a risk? Yes, but I am also excited about new possibilities; swimming again or cliff jumping (maybe just climbing the ladders). Having gone to a surgery support group at the hospital, I met with people who had no seizures since surgery, some who still had seizures and one who had increased memory loss since surgery. I have taken it all in, already asked questions of the professionals and I am soon to put my questions to the surgeon in March. I also have questions to put to myself; what do I consider success? Totally clear from all seizures, partially clear. What about side effects? Could I live with side effects? I know it might not be a total fix (epilepsy free), but I am optimistic that this is a good move for me. Don’t miss tomorrow’s story in the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay). [PARTICIPATE IN THE JUNE EPILEPSY BLOG RELAY ](https://forms.gle/zAcBEQk8xTDthbBs7) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Treatments **Tags:** epilepsy surgery --- ### [Epilepsy Blog Relay: Choosing hope despite brain tumor related epilepsy](https://livingwellwithepilepsy.com/aboutepilepsy/seizure-types-syndromes/brain-tumor-and-epilepsy/brain-tumor-related-epilepsy.html) **Published:** June 1, 2022 **Author:** Guest Contributor **Excerpt:** Amber shares her story of brain surgery and brain tumor related epilepsy. She shares her struggle to find hope and create a life despite her challenges. **Content:** ## ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/05/f8bccb5b-28f4-44f8-a916-bae1d4fa6ed7-1024x768.jpeg "f8bccb5b-28f4-44f8-a916-bae1d4fa6ed7 – Living Well With Epilepsy") ## Amber’s Story Imagine at 19 receiving a death sentence… “We’re sorry, there’s just no hope.” In 1999 a brain tumor was found and I had surgery. My first night home I woke up and was unable to move or make sounds, for what seemed like an eternity. I was aware but stuck. The neurologist did an EEG. The results showed epileptic activity so I was told “no driving” until I was seizure free for a year. I had [brain tumor related epilepsy](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/brain-tumor-survivor-writes-her-first-book.html "Epilepsy Blog Relay: Brain Tumor Survivor writes her first book"). ## Brain Tumor related Epilepsy [Two brain tumors,](https://www.verywellhealth.com/brain-tumors-and-seizures-513567) a death sentence, and my freedom were ripped away in those two words! I know deep down past the “pissedoffness” is the desire to keep myself and others safe. I started taking anti-seizure meds. Increases, decreases, side effects, and missed doses, oh my! Over the years, breakthrough seizures continued despite seizure-free months. Things stabilized and I was able to go a year without a seizure, so I was able to drive again…until the next time. Since 1999, I have had to [stop driving many times due to epilepsy](https://livingwellwithepilepsy.com/2021/livingwell/taking-back-your-independence-without-a-drivers-license.html "3 tips for taking back your independence without a drivers license"). ## Lack of control My seizures went from controlled or unnoticeable to erratically disrupting my life. I lost the privilege to drive again which meant no teaching, or familiar ways of my previous life. I had to be dependent on others and it made me feel like a burden. My dad said, “When you become a mom you will understand”. Although my seizures were somewhat managed over the next 22 years, they still controlled my life. In 2020, I was cleared to drive again until I woke up in my car, off the road, in pain and confused. I was charged with a DUI. It consumed my time and money! In the end, my labs came back clean but the doctors echoed my least favorite words, “no driving”. Anger. Frustration. Disappointment. Understanding. ## Struggle to create a life These struggles were mild compared to what happened in 2021. I had the worst seizures. I had my first ever, multiple, [dangerously intractable, grand-mal seizures](https://livingwellwithepilepsy.com/2021/personal-epilepsy-stories/sheris-story-learning-live.html "Sheri’s Story: Learning to Live All Over with Refractory Epilepsy"), causing even more brain damage. I needed months of PT, OT, and ST. Crawling back to a life that was ripped from me. Again those words, which made me want to scream, “no driving”. Next I headed to Vanderbilt to see if non-medication treatments might help. My neurosurgeon amazed me when he simply said, “My one goal is to get you feeling better”. Prior to and after my hospitalization last year, epilepsy ruined my life more than ever. I hurt those I love, which pushed them away. This wasn’t a choice but a part of my epilepsy. None of us deserved the hell my brain was causing. Dad, Emma, Ethan, Noah and Jay you are strong, forgiving, and resilient. I appreciate y’all! ## Finding hope As my epilepsy became understood by those closest to me, I felt acceptance. My kids and I are on a path moving forward to a better place. My dad, my rock, worked tirelessly to learn about epilepsy as well as to [educate others.](https://livingwellwithepilepsy.com/2015/leilas-ideas/meet-leila-tackling-stigma-one-post-time.html "Meet Leila: Tackling stigma, one post at a time") My friend, Jay has done an exceptional job helping me with communication skills and confidence. My brain surgery story has much to tell. A second much more aggressive tumor appeared… Follow me, as I unfold a story I didn’t write, but traveled. It’s a story bursting to be told. A twist you might predict, but an ending you won’t believe…HOPE! Hope is not easy to find, especially with epilepsy. Surround yourself with those who encourage you and meet you where you are. Let their love encompass you, you deserve it. In my experience hope is found in God and others. No matter what…Choose Hope! ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Brain Tumor and Epilepsy --- ### [Epilepsy Blog Relay: Fran encourages others to seize adventure](https://livingwellwithepilepsy.com/life-with-epilepsy/travel/fran-encourages-others-to-seize-adventure.html) **Published:** November 10, 2022 **Author:** Guest Contributor **Excerpt:** Fran Turauskis, founder and editor of Seize Your Adventure, has taken a moment out of her busy schedule to share her own epilepsy story. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/11/10-2-300x200.jpg "Fran – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/nov-18-ebr-posts/fran-encourages-others-to-seize-adventure.html/attachment/10-2)***This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay). Follow along!*** [Francesca Turauskis](https://francescaturauskis.tumblr.com/) is founder and editor of [Seize Your Adventure](http://seizeyouradventure.com/). She is also an inspirational speaker. Fran has taken a moment out of her busy schedule to share her epilepsy story during the Epilepsy Blog Relay. #### Fran’s Story My first seizure happened more than 7 years ago, when I was 22 and in my last year of university, but it is only recently that I have discovered and become part of ‘the epilepsy community’. That first seizure was so confusing (not least because of the 30 minutes of post-ictal blankness). I had no history of epilepsy in the family but I did have episodes of syncope (fainting) in my teens, so the neurologist decided that this was a faint. But I remember the aching muscles after the episode, and the rush of noise in my ears. The [diagnosis](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/nov-18-ebr-posts/5-tips-for-dealing-with-an-epilepsy-diagnosis.html) of fainting didn’t feel right. A year later was the second ‘one-off’. This time, I gave my boyfriend the “most effective wake-up call, ever” when I had a [seizure in my sleep](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/epilepsy-blog-relay-is-it-a-seizure-or-a-dream.html). I had gone to sleep without a top on and woken up with some wires attached to my naked chest (and they say epilepsy isn’t sexy…) and a mask was over my face. If I was more of a morning person, this would probably be the point I freaked out, but instead I let my boyfriend maneuver me into clothes and into the ambulance. This neurologist agreed it was a seizure – but so far away from the first one, a seizure not worthy of the name epilepsy, yet. #### An epilepsy diagnosis It was around this time that I was working with [children with special needs](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/nov-18-ebr-posts/epilepsy-blog-relay-tips-on-creating-504-and-iep-plans-to-safeguard-your-child-with-epilepsy.html), some of whom had epilepsy. I underwent epilepsy training, was witness to many tonic-clonics and absences, and was able to get an idea from the other side. Despite this training, I didn’t recognize when I started getting auras and partial seizures a few months later. Looking back, I know that I was ignoring something I shouldn’t. I was starting to hear voices – which should have told me there was wrong with my head. External sounds would be muted, and I strained to make sense as lots of disembodied talking whispered to me at once. I would pause, and it would pass. This happened a couple of times, until one day at work I heard these whispers, and then I lost time. I was in the staff room, and then I was on the other end of the building. I felt sick. My head hurt. I could barely focus and barely made it home on the bus. Later that evening, I found a plate from the staff kitchen in my bag – apparently my seizing brain thought that was where it belonged! I think it was that evening my boyfriend saw me have another one. To be honest, they begin to blur. But at least the cluster of them meant the neurologists could confirm it: I have epilepsy. Tests ensued – the electrodes glued to my scalp, the CT scan, the light sensitivity, the sleep deprivation. All to give me the really useful diagnosis of ‘low seizure threshold’ with no noticeable trigger. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/11/Beach-on-Camino-640x427.jpg "Beach on Camino – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/nov-18-ebr-posts/fran-encourages-others-to-seize-adventure.html/attachment/beach-on-camino) #### Tengo Epilepsia Ironically, it was from the moment they told me I could say “I have epilepsy” that I began to feel more disconnected from the phrase. I started taking a medication, which controls my seizures and allows me to live a mostly-independent life. So when I was hitting a rut in my work life, there didn’t seem to be anything stopping me from going on an adventure. I decided to walk 500 miles of the [Camino de Santiago](http://santiago-compostela.net/) in Spain, by myself. It was hard at times, and I ached all over! But it was no worse than it feels after a seizure – we all know one can drain you for days. But epilepsy meant that I could not be as complacent and off-grid as I would have liked. I had the extra worry of getting enough medication to last the full length of my trip. Even without the seizures, the price of travel insurance was increased. I have to inform flight attendants whenever I get on a plane by myself and I had a little tag on my bag shouting “I have epilepsy” (the Spanish is tengo epilepsia) to anyone who is observant enough. #### An Advocate for Awareness – and Adventure As I walked, I talked to as many people as I could about my epilepsy – people from Spain, Portugal, US, UK, Germany, Peru, Argentina – most of whom knew little about the condition. Everyone had questions, the most common one being, “[what do I do if you have a seizure?!](https://livingwellwithepilepsy.com/2016/personal-epilepsy-stories/words-resonate-college-roomate-reconnects-epilepsy.html)“. Fear for me (of me?) was the expression I saw in most people and I saw that lack of awareness was a universal problem. When I returned home to no job, I wrote about my story and I found myself contacted by people with and without epilepsy. Some had taken on similar challenges, and some had never considered that adventure could be possible for someone like them. Through my adventure, I suddenly found that I was connecting with the epilepsy community and becoming an advocate for awareness at the same time. --- Related article: **[Clair and Riley share tips on epilepsy first aid](https://livingwellwithepilepsy.com/2018/aboutepilepsy/epilepsy-first-aid/tips-on-epilepsy-first-aid.html)** --- In Spring 2018, I launched [Seize Your Adventure](http://seizeyouradventure.com/), a unique platform that showcases positive stories of people with epilepsy defying expectations. The website has three aims: to share adventure stories from people who don’t let epilepsy map their lives; to encourage others to explore their own limits; and to spread awareness for epilepsy in all its guises. I’m enjoying collating the mixture of creative non-fiction, interviews and articles, photography and videos, and connecting the epilepsy and adventure communities. The path to my diagnosis was very hard. But my path going forward is making itself clearer, with crowdfunding imminent and collaborations to look forward to. If you have epilepsy and are into adventures, please get in touch to tell me about it! ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Travel **Tags:** adventure, epilepsy diagnosis --- ### [What the EF podcast with Jeff Parent](https://livingwellwithepilepsy.com/epilepsy-news-and-research/podcast/what-the-ef-podcast-with-jeff-parent.html) **Published:** May 9, 2023 **Author:** Landis Wiedner **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/05/Jeff_Parent-1024x1024.jpg "Jeff_Parent – Living Well With Epilepsy")We kick off Seizen 2 of [What the EF podcast](https://www.whattheefpodcast.com/) with professional powerhouse Jeff Parent, who’s a president of Toyota AND the Epilepsy Foundation of America Board. (no biggie.) We chat with Jeff about what it’s like when you, your dad, and two of your [kids have epilepsy](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/epilepsy-mom-reminds-us-to-let-our-kids-play.html "Epilepsy Blog Relay: One epilepsy mom reminds us to let our kids play"). And maybe grab the tissues—because the reason Jeff became an [advocate](https://livingwellwithepilepsy.com/2021/personal-epilepsy-stories/traveling-with-epilepsy.html "Traveling with epilepsy: from hiding epilepsy to advocate") is pretty beautiful. We’re now on [YouTube](https://www.youtube.com/watch?v=4Shq8EPK6LU)! Check it out and subscribe! Available on: [YouTube](https://www.youtube.com/@WhatTheEFPodcast), [Spotify](https://open.spotify.com/show/4rOV3qJjUwJxY7gKCl8z6m), [Apple](https://podcasts.apple.com/us/podcast/what-the-ef/id1649361278), [Google Podcasts](https://podcasts.google.com/feed/aHR0cHM6Ly9hbmNob3IuZm0vcy9iM2RjZjlhYy9wb2RjYXN0L3Jzcw), [Amazon Music](https://music.amazon.com/podcasts/f1311e20-cb73-44de-b5f0-14d4457e6002/what-the-ef), & [Audible](https://www.audible.com/pd/What-the-EF-Podcast/B0BHZLVX7D?qid=1665590894&sr=1-1&ref=a_search_c3_lProduct_1_1&pf_rd_p=83218cca-c308-412f-bfcf-90198b687a2f&pf_rd_r=MSGJFHHWHH7GTYXJA9PK) Follow us on Instagram! [@whattheefpodcast](https://www.instagram.com/whattheefpodcast/) Join our email fam! [whattheefpodcast.com](https://www.whattheefpodcast.com/) -Landis & Lexi ![author avatar](https://secure.gravatar.com/avatar/19f5d1347b7f55432fb2ccf0b0547690de128dddd6f088aac79df9f670cd34f1?s=300&d=mm&r=g) Landis Wiedner Landis is a Chicago-based writer, whose work has been featured on [NBCNewsTHINK](https://www.nbcnews.com/THINK), [Wired](https://www.wired.com/) and [Chicago Tribune](https://www.chicagotribune.com/). She is a writer and Editor for Living Well With Epilepsy. Landis brings a humorous perspective to life with epilepsy. Diagnosed at 32 years old, she sheds light and laughs on managing a new life with seizures. Landis strives to create a touchstone for the chronically ill and those who support them. She is currently finishing a humorous memoir, “My Brain Tumor’s Boyfriend.” [See Full Bio](https://livingwellwithepilepsy.com/author/landiswiedner) [ ](https://livingwellwithepilepsy.com/author/landiswiedner) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://twitter.com/BillieTopanga) **Categories:** podcast --- ### [International Epilepsy Day: from Ireland to Australia with refractory epilepsy](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/from-ireland-to-australia-with-refractory-epilepsy.html) **Published:** February 12, 2024 **Author:** Guest Contributor **Excerpt:** Maria Elizabeth invites us along on her twenty-one year journey with refractory epilepsy as she travels the world and completes her doctorate. **Content:** ## **[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/10/image1-300x225.jpeg "image1 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/portfolio/nov-4-maria-jackson/attachment/image1-3)**Maria’s story The Real ‘E’ Word was a blog that documented Maria Elizabeth’s twenty-one year journey with refractory epilepsy. Despite a diagnosis of [Focal Cortical Dysplasia](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3403799/), she tries to remain upbeat, but real. Born in Northern Ireland, she has travelled extensively, including living in Australia for most of the last decade. When we connected in 2018 she was working on a doctorate and was passionate about supporting others on their epilepsy journey. ## Coming to terms with limitations Part of [living well with epilepsy](https://livingwellwithepilepsy.com/about-epilepsy), of living life with it, is coming to terms with the limitations of the diagnosis. It seems like an obvious statement; epilepsy is life-altering. Limitation should be a familiar experience to us veteran patients. In many ways, twenty one years into my epilepsy journey, I am accustomed to it. The practical lifestyle adjustments it requires are routine. I barely notice that I formulate an unconscious exit strategy every time I am in public. By now, it’s easy to unemotionally intellectualise swim safety and the presence of an anti-suffocation pillow on my bed. Dozens of other mundane, epilepsy determined choices hardly feature on my radar. But it’s not the pragmatics of day-to-day life, that I speak of. It’s the larger limitations, those that have implications on sense of self, that prove more challenging. Oftentimes there emerges friction between our individual potential, and our epilepsy reality. That ongoing identity negotiation is, for me, the most challenging aspect of living with epilepsy. Epilepsy is a never-ending exercise in perseverance and strength of character. What I am guilty of overlooking, is that my greatest limitations have often been the source of my eventual fortitude. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** International Epilepsy --- ### [5 reasons to have a Seizure Action Plan](https://livingwellwithepilepsy.com/aboutepilepsy/seizure-action-plans/5-reasons-to-have-a-seizure-action-plan.html) **Published:** July 18, 2024 **Author:** Jessica K. Smith **Excerpt:** Here are 5 reasons you might want to have a seizure action plan as an adult. **Content:** ## [![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/06/4-1024x1024.png "seizure action plan – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2023/06/4.png)Seizure Action Plan The value of having a seizure action plan may seem intangible and could even seem like a liability in some cases. But having a well thought out plan does not necessarily mean you need to share it with everyone you meet or add it to your Instagram profile. Recently I shared an article that addressed what a [seizure action plan](https://livingwellwithepilepsy.com/2023/aboutepilepsy/rescue-medication/what-is-a-seizure-action-plan.html "What is a seizure action plan?") is and why many adults living with epilepsy might not have one. Here are 5 reasons you might want to have a seizure action plan as an adult. ## 1. Take back some control Living with epilepsy can often make people feel isolated. It also gives us a sense that we have lost control over our own bodies. By taking a little time to think about how you want people to care for you if you have a seizure, and creating a Seizure Action Plan, you are able to take back a little bit of control. ## 2. You are facing a stressful situation Stress is often a trigger for adults living with epilepsy. And let’s face it, it’s pretty hard to avoid stress in this life. However, sometimes are more stressful than others. I recently found this as I was caring for aging parents, and a sick child and found out I was diagnosed with cancer. This would have been a perfect situation for a Seizure Action Plan. ## 3. When you change jobs The time has gone by where we get a job with a company and stay there for our whole career. [According to Indeed](https://www.indeed.com/career-advice/starting-new-job/how-often-do-people-change-careers), from ages 18 to 24, people change jobs an average of 5.7 times. Between 25 and 34 years old, they change jobs an average of 2.4 times. ## 4. Stay safe when you travel Air travel or any travel for that matter can present a whole set of challenges for people with epilepsy. But I would encourage you to be prepared, have a plan and check out [Maureen’s articles on traveling with epilepsy](https://livingwellwithepilepsy.com/2015/traveling-with-epilepsy/traveling-with-epilepsy-a-pharmacy-in-croatia.html "Traveling with Epilepsy: A Pharmacy in Croatia"). She’s an inspiration to me and I’m sure she will be to you too! ## 5. Be prepared for any physical changes This is true for men and women. But as a woman I know it to be especially true for women. Each month our body faces the potential seizure trigger of our period. And then of course there is the massive overhaul that is [pregnancy](https://livingwellwithepilepsy.com/2023/epilepsy-blog-relay/epilepsy-blog-relay-pregnancy-planning-and-epilepsy.html "Epilepsy Blog Relay: Pregnancy planning and Epilepsy") and menopause. Both cause major hormonal changes resulting in an increased risk of seizure activity. And just for fun here’s a video that gives some more info on seizure action plans: ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Seizure Action Plans --- ### [Traveling with Epilepsy: Takeoff!](https://livingwellwithepilepsy.com/life-with-epilepsy/travel/traveling-with-epilepsy-takeoff.html) **Published:** July 5, 2015 **Author:** Maureen Knorr **Excerpt:** Meet Maureen Knorr, Living Well With Epilepsy's newest writer. She's traveling with epilepsy around the world - pills and all. I hope you enjoy her lighthearted approach to what can be some pretty complicated situations. **Content:** [![LLWE_Takeoff!](http://livingwellwithepilepsy.com/wp-content/uploads/2015/07/LLWE_Takeoff-300x200.jpg "LLWE_Takeoff! – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/07/LLWE_Takeoff.jpg)*Meet Maureen Knorr, Living Well With Epilepsy’s newest [writer](http://livingwellwithepilepsy.com/about-us/writers). She’s traveling with epilepsy around the world – pills and all. I hope you enjoy her lighthearted approach to what can be some pretty complicated situations.* #### Traveling with Epilepsy I love traveling, even though it comes with some serious baggage. Like waking up at 5 am for an 8 am flight, and then having to take my laptop out for security. I always “beep-beep-beep” the metal detector even though I have emptied my pockets. And somehow, I always manage to over or under pack – so I’m either washing my garments mid-trip or lugging around a big suitcase with clean clothes! #### Counting the days Traveling with [epilepsy](http://livingwellwithepilepsy.com/epilepsy-101) adds another level of complications. You’re not just counting out undies, you’re counting out meds. I take 9 pills a day (4 red and white ones, 2 big whites, 2 little whites, 1 mini-yellow, and sometimes a mini-white ) so for a weekend vacation I need to bring 18 pills (8 red and white ones, 4 big whites, 4 little whites, 2 mini-yellow, and mini-whites for just in case). For a week vacation I need 49 pills (you get the idea). It’s not rocket science but it is a pain in the butt – especially for the mathematically challenged. Plus, when you are packing something this important, something your life depends on, it’s hard not to double, triple, quadruple check your counting like a million times! And somehow still feel anxious it. #### We vacation too It’s not just the obsessive pill counting. There is also the challenge of getting your [meds](http://livingwellwithepilepsy.com/medications)! I’ll explain. I’m allowed to fill 4 weeks of medication at once. If I have 1 week left of those 4, but am planning a two-week vacation I have to fight the pharmacist to refill my prescription before I leave! I mean, come-on! > *Dear Pharmacists,* > *No one in the world is taking anti-epileptic drugs recreationally. They’re not fun pills.* > *Also, for future reference, people with epilepsy do go on vacation.* > > *Love,* > *Twitchy People* #### [![LWWE_Takeoff!_02](http://livingwellwithepilepsy.com/wp-content/uploads/2015/07/LWWE_Takeoff_02-225x300.jpg "LWWE_Takeoff!_02 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/07/LWWE_Takeoff_02.jpg)The Danger Zone Pill counting and feisty pharmacists are just the beginning of travel stressors. Once you are on your vacation is when you truly enter the danger zone. Before leaving the hotel for the day, have you ever asked yourself, “Do I bring my passport and cash with me or leave it here?” You weigh the risks of being pick-pocketed vs. the chance of a dodgy maid or thief. While having your passport stolen sucks, you can’t even compare it to losing your epilepsy medication. For a two-week vacation I’ll have 100 pills with me. Do I carry those around and risk them being stolen, or leave them in my room and risk the maid calling the DEA on me!? I think it is a good rule of thumb is to treat medicine like it is cash. Bring enough with you for the next three days (just in case!) and then hide the rest in your suitcase and cross your fingers no one takes it. #### Scary but not impossible Traveling with epilepsy is scary but I know firsthand that it’s possible! I highly encourage you to challenge yourself and step out of that comfort zone. Let your fears go and take the risk! #### How about you? What is the biggest concern YOU have about traveling with epilepsy? Comment below. ![author avatar](https://secure.gravatar.com/avatar/21dd1cb76084b50fb7cccc4f2b6135cd43d1c082e5b039d6d4a99606803dc749?s=300&d=mm&r=g) Maureen Knorr I’m Maureen, and I have epilepsy. You’re probably reading this because either you have epilepsy, or you love someone that has epilepsy. Whatever sparked your curiosity, I am happy to be sharing my experiences with you. From having seizures in foreign countries to begging pharmacists that don’t speak English for medication, I can definitely say that it's been an interesting journey. Hopefully reading about my ups and downs, and my everyday and not so everyday adventures will inspire you too! Welcome to my life of living well with epilepsy! [See Full Bio](https://livingwellwithepilepsy.com/author/maureen-knorr) [ ](https://livingwellwithepilepsy.com/author/maureen-knorr) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://maureenknorr) **Categories:** Travel **Tags:** Travel --- ### [Traveling with Epilepsy: A Pharmacy in Croatia](https://livingwellwithepilepsy.com/life-with-epilepsy/travel/traveling-with-epilepsy-a-pharmacy-in-croatia.html) **Published:** December 13, 2015 **Author:** Maureen Knorr **Excerpt:** My husband and I decided to do a weekend getaway to Zadar, Croatia. Part of going on vacation with epilepsy is doing the pill count thing. **Content:** [![LWWE_Croatia02](http://livingwellwithepilepsy.com/wp-content/uploads/2015/12/LWWE_Croatia02-300x225.jpg "LWWE_Croatia02 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/12/LWWE_Croatia02.jpg)My husband and I decided to do a weekend [getaway](http://livingwellwithepilepsy.com/2015/traveling-with-epilepsy/traveling-with-epilepsy-takeoff.html) to Zadar, Croatia. (Sidebar: USA people are thinking, “holy cow a weekend getaway in Croatia!” While the Euro people are thinking, “a three hour flight is way too long for a weekend getaway…” Anyways!) Part of going on vacation with [epilepsy](http://livingwellwithepilepsy.com/portfolio-type/nov-2015-epilepsy-blog-relay) is doing the pill count thing. I’m obsessive about it because missing a single pill will ruin my trip; missing an entire day could have dire consequences. So, I always bring more meds than I need just in case a flight gets canceled, there’s a storm, or some type of zombie apocalypse and I’m never allowed to travel home again. Always prepared! Well, en route to our weekend getaway, I lost my medication. Now I’m not so prepared… #### An Adventure to the Pharmacy My relaxed vacation just turned into a pharmacy hunt. The scary thing about being in other countries is they have different regulations. In Mexico, they’d ring it right up. In the USA, you’d have to wait all day in the ER and then pay and arm and a leg. I was hoping Croatia was more like Mexico. It wasn’t… A condescending pharmacist looked me up down, drilling me with questions. “Why do you take this medication? How long have you taken it for? When did you arrive to Croatia? Where are you from?” In the end, she rolled her eyes and stated, “How does a woman with a serious illness just go on vacation without their medication – that’s just stupid.” I was beginning to despise this woman, but remained calm and respectful. Eventually she agreed to give us the medication with a doctors prescription, although she informed us that she didn’t know of any doctor’s offices open Saturday mornings. My doctor in Ireland was not open for a few hours but I decided to email her a copy of the prescription I had backed up on dropbox and check back that afternoon to see if that was acceptable. #### Staying Positive You may think I was freaking out but I wasn’t. In fact, it was my husband who was chattering away as his cortisol levels skyrocketed. I had decided that the worst-case scenario was that we hop a flight back to Ireland that evening. It really isn’t the end of the world. And who knows… maybe the crazy pharmacist will lighten up after her coffee. We returned that afternoon and another man was working. He didn’t speak English so I decided to keep my story short. I told him the meds I needed and that my prescription was in the system. He sold them to me! Can you believe it!? Just like that! I ran out of there as fast as I could, afraid the mean pharma lady would cancel the transaction. So, I was lucky. And, I was able to enjoy an amazing weekend of swimming, hiking, and biking in Zadar. Thankfully 🙂 [![LWWE_Croatia04](http://livingwellwithepilepsy.com/wp-content/uploads/2015/12/LWWE_Croatia04-225x300.jpg "LWWE_Croatia04 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/12/LWWE_Croatia04.jpg) ![author avatar](https://secure.gravatar.com/avatar/21dd1cb76084b50fb7cccc4f2b6135cd43d1c082e5b039d6d4a99606803dc749?s=300&d=mm&r=g) Maureen Knorr I’m Maureen, and I have epilepsy. You’re probably reading this because either you have epilepsy, or you love someone that has epilepsy. Whatever sparked your curiosity, I am happy to be sharing my experiences with you. From having seizures in foreign countries to begging pharmacists that don’t speak English for medication, I can definitely say that it's been an interesting journey. Hopefully reading about my ups and downs, and my everyday and not so everyday adventures will inspire you too! Welcome to my life of living well with epilepsy! [See Full Bio](https://livingwellwithepilepsy.com/author/maureen-knorr) [ ](https://livingwellwithepilepsy.com/author/maureen-knorr) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://maureenknorr) **Categories:** Travel **Tags:** epilepsy, Epilepsy Awareness, medication, pharmacy, Travel --- ### [Traveling with Epilepsy: A seizure in Buenos Aires](https://livingwellwithepilepsy.com/life-with-epilepsy/travel/a-seizure-in-buenos-aires.html) **Published:** August 3, 2015 **Author:** Maureen Knorr **Excerpt:** After college I moved to Buenos Aires, Argentina to teach English. The thought of being tethered to my neurologist and pharmacy drove me insane! Being told that I couldn’t travel alone simply inspired me to do so! The fact is, having epilepsy means you have a higher risk of early death, which for me translates to “experience what life has to offer, right now!” **Content:** [![LWWE_Argentina_02](http://livingwellwithepilepsy.com/wp-content/uploads/2015/07/LWWE_Argentina_02-e1438382519679-1024x625.jpg "LWWE_Argentina_02 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/07/LWWE_Argentina_02.jpg)As I sat across the table from Ricardo, my landlord, I could feel my blood boiling. In Argentine Spanish, he explained that my rent was going to double, and smiled when he added it was still “a very good deal.” His once charming accent now seemed offensive. Our chat that was supposed to be a quick contract renewal, had turned into an afternoon debate. I had a million questions – why, how, is this legal? It wasn’t legal, but I was working on a tourist visa, so who was I to be reporting dodgy situations. I kept wondering if this was a joke, maybe a miscommunication, but after persistently asking the same questions I realized that he was serious, there were no language barriers, and he was expecting double the rent on the 1st. To give you some context, after college I moved to [Argentina](http://www.ncbi.nlm.nih.gov/pubmed/17164564) to teach English. The thought of being tethered to my neurologist and pharmacy drove me insane! Being told that I couldn’t [travel alone](http://livingwellwithepilepsy.com/category/traveling-with-epilepsy) simply inspired me to do so! The fact is having [epilepsy](http://livingwellwithepilepsy.com/epilepsy-by-the-numbers) means you have a higher risk of [early death](http://livingwellwithepilepsy.com/sudep), which for me translates to “experience what life has to offer, right now!” #### Bossa Nova in Buenos Aires [![LWWE_Argentina](http://livingwellwithepilepsy.com/wp-content/uploads/2015/07/LWWE_Argentina-300x225.jpg "LWWE_Argentina – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/07/LWWE_Argentina.jpg)I left Ricardo’s office holding back the tears, and refusing to commit to another year. My [mind was too clouded to be signing](https://livingwellwithepilepsy.com/?p=100071) contracts. He was right; it was still a good deal. I lived in a beautiful, lofty flat, in the heart of San Telmo. I had high, wood-beamed ceilings, with exposed brick walls. There was a small balcony that overlooked Defensa, a quirky cobble-stoned pedestrian street, and every Sunday I woke up to live Bossa Nova music from the street fair. The location was unbeatable, and the apartment was quintessential Argentina. But double the rent would mean picking up extra classes, doubling my workload, and a complete lifestyle change. Maybe it was time for a new apartment, or maybe it was time to go back to California. #### Thoughts of leaving I could feel sweat start to stain my blouse as I rushed through the busy streets. I was late to class. The summer sun highlighted the city’s beauty, which stirred up feelings of nostalgia. Buenos Aires was a beautiful city. I loved the freshly painted doors with elaborate handles, gold trim detailing, and black lacquered balconies with potted flowers. And the almost florescent green trees evenly spaced down the sidewalks were hypnotizing. I didn’t want to leave! I tried to push these thoughts out of my head and focus on today’s lesson plan but that scoundrel Ricardo was now creeping into my thoughts. A tug-of-war of emotions and sensory neurons were shooting wildly through my head from catching scent of the blossoming trees to wondering how the job market was in San Francisco. My thoughts were everywhere. #### *And then darkness…* I snapped into reality to find a man’s hands strongly holding my shoulders, moving his lips but no sounds were reaching my ears. His eyes seemed kind, but who was he? Where was I? The street was set in shades of grey, colorless, war-torn. Even the mans skin was smog color. Why was he grabbing me, I thought, becoming anxious and trying to escape his grasp. I could feel my face morph into an oversized, clown frown as I started to wail. I tried to twist away, but my body was heavy, my movements uncoordinated, and my legs unable to fully support my weight. Even if I could escape, I didn’t know where I was or which way to go. I looked up and down the street. It was desolate, deserted and blanketed in shadows. The man was now looking deep in my eyes, putting his finger to his lips and encouraging me not to cry. He gave me a big bear hug and I suddenly felt as if we were old friends and found comfort in his big brown eyes. He was trying to help me, to save me. Why was I so confused when he seemed so confident? Maybe there had been a war. An explosion would explain why I couldn’t hear, my confusion, the dust. We must be survivors. Is the world just rubble now, I sadly contemplated? I wondered what evils lurked in the shadows but I saw no movement in the haze. He must understand this post-war story that we were living in. “Who are you and where are we?” I tried to ask. His words were muffled, but his eyes said we were a team. I timidly leaned into him, putting my head to his chest, happy for a moment to relax and collect myself. #### The doctor is on the way Then, a woman appeared from nowhere and was talking to my friend. I examined her face but I had no recognition of who she was. She must be a survivor joining our group. She placed her hands on my shoulders and started moving her lips at me. Finally, my ears popped. “Love, do you speak English?” I was confused. “Love, do you speak English? Cómo te llamas? Do you understand me?” Her curly hair made me dizzy as she put her face closer to mine. “Love, we called the doctor. Can you hear me? The doctor is on the way.” Hearing “doctor” repeatedly drew me back into “reality.” I looked up at the man I had melted into and suddenly could see how awkward he was with his arms around me. I was just a stranger clinging to him! He was desperate to get out of this situation, and negotiating his exit plan with the woman. He slid away from me and pushed my jello body towards her, giving my shoulder one last squeeze with a warm half-smile. I felt abandoned watching him walk away. I felt alone. And I was starting to realize I was in an entirely different reality than the man I had believed was my teammate. > *“Miss, do you know what happened? Do you speak English?”* An ambulance seemed to have arrived the moment I turned my head. “What’s your name?” The one with the tattoos and bushy eyebrows asked while the fat one took my pulse. “My name?” I couldn’t remember. “I’m on my way to a movie…” I mumbled. It was the only thing I could think to say as the fat one continued to poke and prod me. I looked down the street to see if anyone or anything was familiar. Jamais Vu. “My friends are over there…” I pointed up the street with my chin. I was lying but hopeful. “Miss, you were found unconscious in the middle of the street. We don’t think your friends would leave you like that, and there is no movie theater nearby. You have a concussion and need to come with us.” The tattooed man stated while dilating my pupils. I didn’t want to go anywhere with him or that fat man! They could be kidnappers! My panic kicked in and I started looking up and down the street for my friends and the brown-eyed man. Where were they? The curly haired woman was now pulling me to my feet, “don’t worry, love. They’ll take good care of you.” I resisted and put all my weight in my heels, but the two men picked me up effortlessly. These could be bad guys, here to kill me, or worse, I thought. The world was still in shades of grey as fear knocked me unconsciousness. #### Sarah and Mary to the rescue [![LWWE_Argentina_03_Mary](http://livingwellwithepilepsy.com/wp-content/uploads/2015/07/LWWE_Argentina_03_Mary-300x225.jpg "LWWE_Argentina_03_Mary – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/07/LWWE_Argentina_03_Mary.jpg)I woke up in an overstuffed hospital with a doctor scrolling through my phone. “Who would you like me to call?” he asked, welcoming me back to reality. Names and faces flashed through my mind. Everything was clear and understandable. “Sarah & Mary.” I smiled because life was in color. The war was over. Sarah arrived in what felt like minutes. Bright, blue eyed, Sarah! My partner-in-crime and movie-marathon friend. Minutes later Mary rushed in the room. Mary, my voice of reason and dance partner! Both of them were here, they were real. The war-torn, colorless world didn’t exist. I lived in a beautiful world with wonderful friends! Appreciation for lucidity is a sensation that I never was able to pinpoint until I lost it. Being present is an indescribable feeling that I am incredibly thankful for! And a feeling many take for granted. Surviving that war-torn, alternate reality gave me a deeper appreciation for the simple things. It also amazed me how an afternoon like that could put my life challenges into perspective, streamlining even the most difficult of decisions. ![author avatar](https://secure.gravatar.com/avatar/21dd1cb76084b50fb7cccc4f2b6135cd43d1c082e5b039d6d4a99606803dc749?s=300&d=mm&r=g) Maureen Knorr I’m Maureen, and I have epilepsy. You’re probably reading this because either you have epilepsy, or you love someone that has epilepsy. Whatever sparked your curiosity, I am happy to be sharing my experiences with you. From having seizures in foreign countries to begging pharmacists that don’t speak English for medication, I can definitely say that it's been an interesting journey. Hopefully reading about my ups and downs, and my everyday and not so everyday adventures will inspire you too! Welcome to my life of living well with epilepsy! [See Full Bio](https://livingwellwithepilepsy.com/author/maureen-knorr) [ ](https://livingwellwithepilepsy.com/author/maureen-knorr) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://maureenknorr) **Categories:** Travel **Tags:** argentina, buenos aires, seizure, Travel --- ### [Traveling with Epilepsy: A Sleepover](https://livingwellwithepilepsy.com/life-with-epilepsy/travel/traveling-with-epilepsy-a-sleepover.html) **Published:** January 10, 2016 **Author:** Maureen Knorr **Excerpt:** Whether it's hiking in Spain or a sleepover at a friend's house, having Epilepsy presents challenges to overcome. **Content:** [![Traveling with Epilepsy: A sleepover](http://livingwellwithepilepsy.com/wp-content/uploads/2016/01/9761341522_a582210166_k-300x200.jpg "9761341522_a582210166_k – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/9761341522_a582210166_k)*Photo flickrTim RT*The hot pavement must have been what brought me back into reality. I was walking in the middle of the road and the black asphalt had become unbearable. I quickened my pace, skipping in efforts to alleviate the pain and suddenly realized the situation. I had no idea where I was. I had no idea where I was coming from, or where I was going. I was afraid, running away, and my bare feet were starting to blister. I felt as if I were in a nightmare, a lucid dream, or perhaps belligerent. Everything around me was blurry but slowly it cleared and I saw that there were green lawns and wide sidewalks to save my feet. “So why was I in the middle of the road?” I thought #### Awareness slowly returns I lumbered to the safety of the white sidewalk. I suspected it was early morning as I stumbled past a couple drinking coffee on their front porch. They gave me a disapproving look, so I avoided eye contact and pretended that I knew where I was going, what I was doing, who I was… Every house looked the same. I wandered on as I tried to connect the dots. [What was happening?](http://livingwellwithepilepsy.com/2010/epilepsy-news/are-you-seizure-smart.html) I was wearing my nightgown, braless, hair uncombed and wild, and I had blood on my face. The blood on my face was from biting my tongue. I now realized that I had must have just had a seizure. It is common after a [tonic clonic](http://livingwellwithepilepsy.com/diagnosis) (grand mal) seizure for the victim to be scared, confused and act bizarre. It is also common for the victim to not know who they are, what year it is, or even recognize family. Slowly, I started to step back into reality. I was suddenly aware of how wildly inappropriate I looked walking down a street that only saw fit runners and dog walkers, but I had no plan to get out of this situation. I needed help. I walked by driveway after driveway, porch after porch, praying that someone would come to my rescue, but every pair of eyes I met looked at me in disgust and turned away. #### A sleepover gone awry Things were coming back to me faster and faster. I was at a sleepover at Mara’s house, my best friend. “How long had I been walking? Is her house near?” I thought. My bleeding bare feet suggested I had been walking for a long time. Now I knew that I had to get back to her house. I wandered on but it seemed no one was going to help a girl staggering around barefoot in a nightgown. I was sure this neighborhood had never seen such a thing! I caught a man’s eye while he was watering his lawn. “Please, please, I need to use your phone. My words were slurred as my bitten tongue had swelled. ” He turned his back to me but I walked on the grass towards him. “Please, this is an emergency!” My voice cracked and I inhaled big gulps of air while I spoke. “Please, call me a taxi. I need a taxi! Sir, help me!” He threw down his hose, marched inside and returned with a cordless phone. I heard him mumbling on the phone. “A taxi will be here in 20 minutes,” he stated without eye contact as he ducked inside never to be seen again. I suddenly felt overwhelmed with emotion. I couldn’t hold back the huge sobs that knocked me to my knees and shook my body. I sat at the edge of that perfectly manicured lawn rocking back and forth on my knees with my palms and forehead on the ground, unable to control the tears. I cried because I was so thankful that this was over. Now I was back to reality. Words could never describe the terror I feel in that alternate universe I visit during my seizures. I now knew where I was going and who I was. I cried because that man didn’t realize how much calling a taxi meant to me. I felt indebted to him. I cried because I was humiliated. I cried because I felt that it was unfair that I had epilepsy. And I cried because I felt alone. How could anyone ever understand how I felt? The cab took me to Mara’s house, only 1 mile down the road. Mara raced out of her house and flung her arms around me. “You had a seizure. It was so scary! Then you stood up pushed me away and ran out the front door. You had this horrible look in your eyes that I had never seen. You didn’t even know who I was. I didn’t know what to do! You just ran!” Her voice was quivering. My best friend was holding back the tears as she told the story over and over. I should have felt joy for having such a concerned friend, but all I felt was guilt. I had ruined her day and I had absolutely no control over my actions. #### Taking some measure of control It took me a long time to realize that although I had no control of epilepsy, I did have control of how I lived with it. And long ago, I had already decided to take [chances](http://livingwellwithepilepsy.com/2015/traveling-with-epilepsy/traveling-with-epilepsy-takeoff.html), and [not let fear](http://livingwellwithepilepsy.com/2015/blog-relay/traveling-with-epilepsy-they-say-you-cant-skydive.html) of the unknown dictate my agenda and activities. **What have you done to take control over how you live with your epilepsy? Share what has helped you feel more in control in the comments below.** ![author avatar](https://secure.gravatar.com/avatar/21dd1cb76084b50fb7cccc4f2b6135cd43d1c082e5b039d6d4a99606803dc749?s=300&d=mm&r=g) Maureen Knorr I’m Maureen, and I have epilepsy. You’re probably reading this because either you have epilepsy, or you love someone that has epilepsy. Whatever sparked your curiosity, I am happy to be sharing my experiences with you. From having seizures in foreign countries to begging pharmacists that don’t speak English for medication, I can definitely say that it's been an interesting journey. Hopefully reading about my ups and downs, and my everyday and not so everyday adventures will inspire you too! Welcome to my life of living well with epilepsy! [See Full Bio](https://livingwellwithepilepsy.com/author/maureen-knorr) [ ](https://livingwellwithepilepsy.com/author/maureen-knorr) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://maureenknorr) **Categories:** Travel **Tags:** control, seizures, tonic clonic, Travel --- ### [Epilepsy Blog Relay: Traveling as an Autistic with Epilepsy](https://livingwellwithepilepsy.com/life-with-epilepsy/travel/epilepsy-blog-relay-traveling-as-an-autistic-with-epilepsy.html) **Published:** July 1, 2019 **Author:** Audra Sisak **Excerpt:** Have you ever wondered what it’s like to travel as an autistic with epilepsy? Here are a few tips on how to manage the independence needed to travel. **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/06/17012227-2E2F-4271-ACFF-CF5FACD0EE1E-1-e1561912031226-291x300.jpeg "17012227-2E2F-4271-ACFF-CF5FACD0EE1E-1 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/um_user_photos/us-and-our-animals-2/attachment/17012227-2e2f-4271-acff-cf5facd0ee1e-1)This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** Have you ever wondered what it’s like to travel as an [autistic adult with epilepsy](https://livingwellwithepilepsy.com/category/autism-and-epilepsy)? There are many barriers that can hold us back. It can be even more challenging when you have a child who is [autistic with epilepsy](https://livingwellwithepilepsy.com/category/autism-and-epilepsy) as well! It is about planning, researching, and taking charge! Let’s explore what options are available for those with disabilities and different abilities. This is for all those wanting independence to travel, but not sure how to find it. #### Excerpt from Article Epilepsy can change many parts of the lives of those who live with it every day. We lose our independence from driving a vehicle, taking a bath, and traveling. Planning a trip locally takes less energy and effort but traveling distances can be a daunting task. So, what happens when someone wants to travel farther lengths or internationally? Let’s take a look at a few areas to think about when an epileptic need to travel for a long length of time or distance. Also, an interview with the parent of an [autistic teenager with epilepsy](https://livingwellwithepilepsy.com/category/autism-and-epilepsy) who is planning a trip to Italy, desperately seeking answers. [Read More ](https://ourlifewithautismsite.wordpress.com/2019/06/27/autistics-with-epilepsy-traveling/) ![author avatar](https://secure.gravatar.com/avatar/b21a0aa498334f5594b605bcb69144d40cce7b2037684d4b246b1590d7b07d35?s=300&d=mm&r=g) Audra Sisak My name is Audra (Momma Employee) and I have a son The Boss. We are both autistic and have epilepsy! We are both trying to navigate this complex world, together. He runs my schedule and we experience love and life as one family. Our journey comes with ups and downs, but it’s our lives. Welcome to our crazy, funny, weird, socially awkward, introverted, anxiety-ridden, happy, joyful page!We are both supportive of neurodiversity! Momma Employee- QASP, CAS, BCCS, Freelance Writer, Advocate. I love working with my community! I support SCERTS model, DLT model, and therapy to include CBT/ACT. [See Full Bio](https://livingwellwithepilepsy.com/author/audrasisak) [ ](https://livingwellwithepilepsy.com/author/audrasisak) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/2015hlwa/) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://2015hlwa1) **Categories:** Travel --- ### [Traveling with Epilepsy: Finding Adventure in Slovenia](https://livingwellwithepilepsy.com/life-with-epilepsy/travel/adventure-in-slovenia.html) **Published:** July 11, 2021 **Author:** Maureen Knorr **Excerpt:** Sometimes, finding adventure means ignoring fears and jumping in with both feet. Going canyoning in Slovenia required just that! **Content:** ![DCIM100GOPRO](http://livingwellwithepilepsy.com/wp-content/uploads/2016/07/canyoning_fratarica_bovec-300x223.jpg "DCIM100GOPRO – Living Well With Epilepsy")No biking, no swimming, no driving, and don’t even think about having fun! That’s how a conversation with an [epileptologist](http://livingwellwithepilepsy.com/diagnosis) sounds. (They don’t actually say the “no fun” part, I just interpret it that way.) Reading alone? No, you could suffocate in your pillow! Soaking in a Jacuzzi? Do you want to drown? Repelling from a 50-meter waterfall? Ha, don’t even think about it! Honestly, I only got an eye-roll from my doctor when I mentioned repelling down waterfalls, so I took this as an off-record approval and booked a weekend getaway with my husband and friends to Bled, Slovenia. My goal: be brave and adventure! #### The Adventure We booked a private [canyoning](http://www.bled.si/en/what-to-do/summer-sports/canyoning) trip with an experienced guide. My husband and I were nervous for two reasons. First, we aren’t athletes and canyoning is an all day event. You wake up early, eat protein bars, hike into the canyon (might I add that the hike is up a mountain in a wet-suit) and then, like a crazy person, you boulder your way down; jumping off big rocks into freezing cold water and repelling down steep cliffs and waterfalls. When I say it aloud, it actually doesn’t sound safe for even the strongest of [athletes](http://livingwellwithepilepsy.com/category/epilepsy-and-fitness)! We must be crazy! The obvious reason we were nervous is because of my epilepsy. I can’t help but think, “what if I have a seizure right now?” when I am in a potentially dangerous situation. Especially because losing consciousness at the wrong time means I could really hurt myself, or worse. But as my readers know, I’ve learned that I can’t let that fear dictate my life. As planned, we woke up early Saturday morning and hiked up the mountain in our rubbery wet-suits. I was exhausted by the time we reached the top! My calves ached and my heart was racing, but I was so excited for the adventure to come I still felt energized and ready to go. We jumped, slid, and scrambled down boulders like pros, or so it felt! The sun was shining, the air was brisk, and we were all smiles! Of course my mind drifted to the “what-ifs” but I didn’t let it stop me from taking the leap and enjoying the moment. And then, I fell. In fact, I wiped out and ended up face down in the river. I jumped up fast but could already feel a boulder size bruise developing on my thigh. My husband’s eyes were wide with the “was that a seizure, or are you just clumsy?” look. I was 75% sure it was just a slip, but to be safe I took a long time to gather my thoughts and guts before I continued. #### The Waterfall The rest of my climb down was safe and fall-free, other than the intended falls! The grand finale was repelling down a 50-meter waterfall! I opted for the “floating down” option, allowing our guide to support 100% of my weight, instead of taking the rope in my own hands. It was a safe choice for those that could have a seizure at any moment! Slowly gliding down that waterfall, entrusting my life to a thin rope, was incredibly exhilarating. I felt safe but also felt anything could happen. The day’s adventure wasn’t just about canyoning; it was about ignoring my fears, the “what-ifs,” and experiencing the day with an open heart. [![DCIM100GOPRO](http://livingwellwithepilepsy.com/wp-content/uploads/2016/07/GOPR0959-1024x768.jpg "DCIM100GOPRO – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2016/traveling-with-epilepsy/adventure-in-slovenia.html/attachment/dcim100gopro) ![author avatar](https://secure.gravatar.com/avatar/21dd1cb76084b50fb7cccc4f2b6135cd43d1c082e5b039d6d4a99606803dc749?s=300&d=mm&r=g) Maureen Knorr I’m Maureen, and I have epilepsy. You’re probably reading this because either you have epilepsy, or you love someone that has epilepsy. Whatever sparked your curiosity, I am happy to be sharing my experiences with you. From having seizures in foreign countries to begging pharmacists that don’t speak English for medication, I can definitely say that it's been an interesting journey. Hopefully reading about my ups and downs, and my everyday and not so everyday adventures will inspire you too! Welcome to my life of living well with epilepsy! [See Full Bio](https://livingwellwithepilepsy.com/author/maureen-knorr) [ ](https://livingwellwithepilepsy.com/author/maureen-knorr) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://maureenknorr) **Categories:** Travel **Tags:** epilepsy, Epilepsy Awareness, Living Well With Epilepsy, seizures, Stigma, Travel --- ### [Traveling with epilepsy: from hiding epilepsy to advocate](https://livingwellwithepilepsy.com/life-with-epilepsy/travel/traveling-with-epilepsy.html) **Published:** November 16, 2021 **Author:** Guest Contributor **Excerpt:** You may know Laura as "Traveling with Epilepsy" from Instagram. Here she shares her epilepsy story from newly diagnosed to epilepsy advocate. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/11/Screen-Shot-2021-11-15-at-6.01.14-PM-e1637017856648.png "Screen Shot 2021-11-15 at 6.01.14 PM – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2021/11/Screen-Shot-2021-11-15-at-6.01.14-PM-e1637017856648.png)You may know Laura as [Traveling with Epilepsy](https://www.instagram.com/travelingwithepilepsy/) from her beautiful instagram page. Here she shares her epilepsy story from newly diagnosed to epilepsy advocate. #### Laura’s Story I grew up as any “normal” kid being active and enjoying the outdoors, camping, playing, singing. My life as a “normal” child ended at around age eight when my mom noticed my spacey moments, which at the time we did not know were seizures. I would be in the middle of a conversation and she would see a look on my face like I was upset. I had no idea because my seizures were the type of an absence seizure known as a partial complex seizure. My mom took me to doctors and then neurologists. I had EEG’s, MRIs but nothing came up. When we moved to Southern California I was referred to a neurologist who put me onto anti-epileptic drugs. It did not make them stop, but because my episodes were so short and minimal, my neurologist thought they were just auras (the feeling you get before an actual seizure). #### What is an aura? According to the University of Michigan, “an aura is the term used to describe symptoms that may occur before a seizure. An [aura](https://livingwellwithepilepsy.com/2016/aboutus-lwwe/emilys-perspective/emilys-perspective-auras.html) is often the first sign that you are going to have a seizure.” More recently research has shown that an aura is actually the first part of a [focal seizure](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/deja-vu-and-temporal-lobe-epilepsy.html) before consciousness is impaired. #### Years until a diagnosis After about five different neurologists, I was put on medicine that controlled them during the day and they now only happen at night. When I would have a slumber party or stay up late, my friends would see my “episodes.” Unless I felt very comfortable with a person I would make up excuses for what they were like saying I was thinking of something sad, or I was just daydreaming, or even humming a song. It wasn’t until college that I was technically diagnosed with having Epilepsy. #### Then came stigma and discrimination I had test after test and multiple hospital stays to get answers but they led to nothing. It was confusing to explain to other people because I didn’t truly understand it all myself. Because I was in the performing arts, if I had one during a rehearsal I was being watched and it became embarrassing. I only had one ever during an evening rehearsal and my acting teacher just thought I was caught up in the sad scene. When I told my director later that it was a seizure their response was “Why didn’t you tell me this before I cast you as the main role?” I will NEVER forget that day. It was the first time that I felt discriminated against for having a neurological disorder. However, the show must go on, and I continued to act and sing. #### “Trust me there have been many uneducated people who thought I was going to be a liability because of my epilepsy.” #### – Lauren, [@travelingwithepilepsy](https://www.instagram.com/travelingwithepilepsy/) #### Hiding my epilepsy From that moment in high school, I avoided telling people that I had seizures. If anything, I swept it under the rug. I took my pills, went to appointments and continued on in life. I refused to be labeled which pushed me to go out and take on the world. Only my best friends, boyfriends and family members knew. In college, I studied abroad and got a huge travel bug while living in Spain. I bought a one way ticket in my mid-twenties to Europe where I lived for over a year teaching English. One suitcase was filled with just epilepsy medications. I was almost seizure free the entire time I lived in Europe because I was less stressed. Stress is one of my only triggers that I can pin point besides lack of sleep. When I returned back to the states, I switched seizure medications and had a bad reaction with it and a birth control pill that I was on. I had to be hospitalized for over 5 days and then decided to come out with a blog about being more open with having Epilepsy. Now, I want to inspire others to not only live their lives with Epilepsy but also travel and THRIVE with it. Since being diagnosed with epilepsy, I have traveled to South East Asia by myself and multiple countries around the world (over 25). #### “I want to inspire others to not only live their lives with epilepsy but also to travel and THRIVE with it.” #### – Lauren, [@travelingwithepilepsy](https://www.instagram.com/travelingwithepilepsy/) #### Who do you know that has epilepsy? One out of twenty-six people live with Epilepsy which is about one child in every classroom, at least two or three passengers on every plane, so chances are you know someone who has or will have it. It is not something you can spread or catch but that is a lot of people who have Epilepsy in the world. Also, everyone has a 10% chance of having a seizure in their lifetime. I will continue my dedication to helping others with this neurological disease and spread awareness to end the stigma that all seizures are alike. Please follow my instagram for more information or if you have any questions [@travelingwithepilepsy](https://www.instagram.com/travelingwithepilepsy/) Stay strong warriors! [![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/11/Screen-Shot-2021-11-15-at-5.57.30-PM.png "Screen Shot 2021-11-15 at 5.57.30 PM – Living Well With Epilepsy")](https://www.instagram.com/travelingwithepilepsy/) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Travel **Tags:** Auras, Travel, traveling with epilepsy --- ### [Epilepsy Blog Relay™: Dave on being an Epilepsy Dad](https://livingwellwithepilepsy.com/life-with-epilepsy/fathers-day/dave-on-being-an-epilepsy-dad.html) **Published:** November 26, 2017 **Author:** Guest Contributor **Excerpt:** From Dave: My son wakes up every day and takes a handful of pills. He may have already had a few seizures and he has to will himself to get ready for school. **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/11/lake-henry-fall-2016-140-1-768x512-300x200.jpg "lake-henry-fall-2016-140-1-768x512 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/dave-on-being-an-epilepsy-dad.html/attachment/lake-henry-fall-2016-140-1-768x512)This post is part of the Epilepsy Blog Relay™ which will run from November 1 to November 30, 2017. Follow along!*** #### Excerpt from Epilepsy Dad My son wakes up every day and takes a handful of pills. He may have already had a few seizures that disturbed his sleep. He has to will himself to get ready for school. He eats his high fat, mayonnaise, and soy flour donuts and drinks his vitamins that sometimes upset his stomach. The drugs kick in and his brain swims in mind-altering medicine. His school is crowded, loud, and hard, but he walks through those doors and up those stairs and waves back at us as he passes through the glass atrium with a smile. [Read Dave’s Post ](http://www.epilepsydad.com/) --- NEXT UP: Be sure to check out the next post tomorrow by Leila at [livingwellwithepilepsy.com](http://livingwellwithepilepsy.com). For the full schedule of bloggers visit [livingwellwithepilepsy.com](http://livingwellwithepilepsy.com). TWITTER CHAT: And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Fathers Day --- ### [Sproutflix](https://livingwellwithepilepsy.com/life-with-epilepsy/sproutflix-2.html) **Published:** July 25, 2017 **Author:** Leila Shields **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/07/image003-e1505479199353.jpg "image003 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/epilepsy-news/sproutflix-2.html/attachment/image003) Sproutflix has released more short films, adding to their [Sproutflix](http://sproutflix.org/) catalogue, the largest and most diverse assortment of films featuring people with I/DD on the marketplace. [**Brooklyn Love Tales** ](http://sproutflix.org/all-films/brooklyn-love-tales/) 12 min. / documentary / USA A personal look into the lives of three couples with intellectual and developmental disabilities. This is the latest film made by Anthony Di Salvo, Sprout’s ED. [**Navigation**](http://sproutflix.org/all-films/navigation/) 4 min. / dance / Spain A modern dance performance – Navigating through life makes every human face different situations; some are in favor of and others are against the tide – cutting through the waves of time and always moving forward. [**Someone Like Me** ](http://sproutflix.org/all-films/someone-like-me/) 9 min. / documentary / USA Two young adults with Fetal Alcohol Spectrum Disorder spend a day exploring Seattle together, and discuss the difficult realities of living with a preventable disability. Our [Sprout Touring Film Festival](http://www.sprouttouringfilmfestival.org/) will be visiting the following cities. If your agency would like to sponsor a Sprout Film Festival please contact me or visit our website for additional info. Columbia, MD ~ Saturday, June 24 [The Arc of Howard County](http://www.archoward.org/) & [Howard County Autism Society](http://www.howard-autism.org/) Rockford, IL ~ Saturday, August 5 [The Arc of Winnebago, Boone and Ogle Counties](http://www.arcwbo.org/home0.aspx) Jamestown, NY ~ Friday, Sept. 29 [The Resource Center](http://resourcecenter.org/) Atlanta, GA ~ Saturday, Sept. 30 [Hi-Hope Center](http://hihopecenter.org/) Duluth, MN ~ Thursday, Oct. 5 [Arc Northland](http://arcnorthland.org/) Like our Facebook page to stay updated on new additions to Sproutflix and the upcoming Sprout Touring Film Festivals: [www.facebook.com/sproutfilmfestival](http://www.facebook.com/sproutfilmfestival) ![author avatar](https://secure.gravatar.com/avatar/4cebf381fbce646cb0dbabef2348282b941c67524a3f03f08d6e328fa6c976cb?s=300&d=mm&r=g) Leila Shields Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania. [See Full Bio](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPGcgY2xpcC1wYXRoPSJ1cmwoI2NsaXAwXzM0M18xMDE2KSI+CjxwYXRoIGQ9Ik03Ljk5OTk5IDBDMTIuNDE4MyAwIDE2IDMuNTgxNzMgMTYgNy45OTk5OUMxNiAxMi4wOTAyIDEyLjkzMDMgMTUuNDYzIDguOTY5MjEgMTUuOTQxNFYxMC40NDQ3TDExLjEzMzQgMTAuNDQ0N0wxMS41ODIzIDhIOC45NjkyMVY3LjEzNTM5QzguOTY5MjEgNi40ODk0NSA5LjA5NTkxIDYuMDQyMjYgOS4zODY1NyA1Ljc1NjU2QzkuNjc3MjYgNS40NzA4NCAxMC4xMzE5IDUuMzQ2NjIgMTAuNzg3OCA1LjM0NjYyQzEwLjk1MzggNS4zNDY2MiAxMS4xMDY2IDUuMzQ4MjcgMTEuMjQyMiA1LjM1MTU3QzExLjQzOTQgNS4zNTYzOCAxMS42MDAxIDUuMzY0NjcgMTEuNzEyIDUuMzc2NDRWMy4xNjAzMkMxMS42NjczIDMuMTQ3ODkgMTEuNjE0NSAzLjEzNTQ3IDExLjU1NTQgMy4xMjMyNEMxMS40MjE0IDMuMDk1NTQgMTEuMjU0OCAzLjA2ODgzIDExLjA3NTcgMy4wNDUzN0MxMC43MDE2IDIuOTk2MzYgMTAuMjcyOSAyLjk2MTU0IDkuOTcyOTIgMi45NjE1NEM4Ljc2MTYgMi45NjE1NCA3Ljg0NjE0IDMuMjIwNjggNy4yMDcxMyAzLjc1NzQ2QzYuNDM1OTIgNC40MDUyNyA2LjA2NzM5IDUuNDU3NDggNi4wNjczOSA2Ljk0NjU5VjcuOTk5OTlINC40MTc3MlYxMC40NDQ3SDYuMDY3MzlWMTUuNzY0NEMyLjU4Mjg4IDE0Ljg5OTkgMCAxMS43NTE4IDAgNy45OTk5OUMwIDMuNTgxNzMgMy41ODE3MyAwIDcuOTk5OTkgMFoiIGZpbGw9IiM0MzQ5NjAiLz4KPC9nPgo8ZGVmcz4KPGNsaXBQYXRoIGlkPSJjbGlwMF8zNDNfMTAxNiI+CjxyZWN0IHdpZHRoPSIxNiIgaGVpZ2h0PSIxNiIgZmlsbD0id2hpdGUiLz4KPC9jbGlwUGF0aD4KPC9kZWZzPgo8L3N2Zz4K) ](https://www.facebook.com/leila.zorzie) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://lzorzie) **Categories:** Life With Epilepsy --- ### [Epilepsy Blog Relay: Andrea prepares for a tour with her band Motion Device](https://livingwellwithepilepsy.com/epilepsy-stories/andrea-prepares-for-a-tour-with-her-band-motion-device.html) **Published:** June 13, 2018 **Author:** Guest Contributor **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/06/andrea_EP_pic-300x300.jpg "andrea_EP_pic – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/jun-18-ebr-posts/andrea-prepares-for-a-tour-with-her-band-motion-device.html/attachment/andrea_ep_pic)**This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from June 1 to June 30, 2018. Follow along!** #### Andrea’s story When people see Andrea Menoudakis, whether it’s in a Youtube video or on stage with her rock band [Motion Device](https://motiondevice.net/), for the most part they will see one thing – a musician. She just turned 21 and has already been playing piano for sixteen years and bass for over a decade. It’s safe to say she feels most comfortable with an instrument at her finger tips but there’s a lot more to her than meets the eye. After Andrea finished high school with honours she immediately began working full-time as an instructor in an after-school tutoring program. Besides teaching, keeping busy with her music and playing in a rock band, she also has one more unique quality about her… Andrea has [epilepsy](https://livingwellwithepilepsy.com/2018/leilas-ideas/epilepsy-blog-relay-epilepsy-isnt-my-only-story.html). #### Diagnosed with epilepsy At the age of seven, Andrea’s parents noticed she started having short staring spells. She would stop whatever she was doing for a second or two and then continue where she left off as if nothing happened. The staring spells began to occur more frequently and last longer than a few seconds as she grew older so the time came to seek out a medical opinion. After seeing her doctor, a few specialists and getting some tests done, she was diagnosed with epilepsy. The doctors told the family Andrea had been having absence seizures. Although the seizures seemed to disrupt Andrea’s life more often as the years passed by, she still managed to lead a normal life. Her family decided to try and avoid prescribed medication for some time and tried to treat her holistically but nothing really helped. However after a couple grand mal seizures her parents decided to again seek out medical treatment. Andrea was prescribed an antiepileptic drug by an epilepsy specialist and she’s been taking it ever since. It’s the only medication she takes and it seem to have helped keep the grand mal seizures under control and minimize her petit mal seizures as well – but she still has ‘daydreams’ as she calls them a few times a day. In fact, she composed a song on piano about epilepsy called [‘Daydream’](https://www.youtube.com/watch?v=6gxw8hARBX8) when she was sixteen. #### Andrea and Motion Device Andrea has learned to cope with epilepsy and not let it get in the way of her aspirations to be a full-time musician and hopefully tour the world with her band mates from Motion Device… which include her 16 year old sister Sara, who sings lead vocals, their 19 year old brother David, who plays drums, and their 24 year old first cousin Josh Marrocco who plays guitar for the band. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/06/MDKSPIC-640x427.jpg "MDKSPIC – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/jun-18-ebr-posts/andrea-prepares-for-a-tour-with-her-band-motion-device.html/attachment/mdkspic) Motion Device has gained quite a following with over 90,000 social media fans who have donated more than $100,000 over a span of three years to see the band release a 5-song EP called ‘Welcome to the Rock Revolution’ in 2014, a full-length album called ‘Eternalize’ in 2015, and a double-CD concept album called ‘Wide Awake’ last year – all funded through Kickstarter. Watch Andrea play her six-string bass in the band’s single ‘Soul Shaker’ on Youtube: #### The ‘HIGH ROAD’ Tour Andrea’s current crowd-funding campaign is called the ‘High Road’ tour and is all about bringing her band Motion Device to the U.S. for a three-city mini tour with stops in Indianapolis, Atlanta and New York – something their American fans have been asking for quite some time.You can visit the Kickstarter project page and pledge for show tickets, meet & greet V.I.P. passes, signed merchandise and more. In addition ALL backers get an added bonus… the band’s new album coming out in 2019. **Visit Motion Device’s Kickstarter here:** A good portion of Andrea’s fans know about her epilepsy. In fact some of them have epilepsy themselves and have told her and the band many times over how much Motion Device’s music means to them. The band writes original music that is both soft and melodic and pretty heavy at times, but always has something deeper to share within its lyrics, which is a big reason why so many have fallen in love with their sound. One thing is for sure – Andrea is determined to make a life out of her music. Although having epilepsy can be a huge obstacle for a musician, it has also given Andrea the strength and inspiration to show others that life truly can be a beautiful and incredible journey. Join Andrea on Kickstarter, and help Motion Device bring awareness to the millions of others who have epilepsy, and the millions more who need to know more about it. --- **NEXT UP:** Be sure to check out the next post by Alison at [http://www.shedlightonepilepsy.org/.](http://www.shedlightonepilepsy.org/) **TWITTER CHAT:** Save the date for the #LivingWellChat on June 30 at 7PM ET. [![epilepsy blog relay](https://livingwellwithepilepsy.com/wp-content/uploads/2018/05/june-2018-social-EBR1-150x150.png "june 2018 social EBR(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-participants/attachment/june-2018-social-ebr1)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our [generous sponsors and partners](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-sponsors-and-partners)! [Participate as a November Blogger ](http://bit.ly/Nov18EBRForm) [Become a November Sponsor ](http://bit.ly/1819EBRMk) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories --- ### [Epilepsy Blog Relay: Epilepsy helps Shonet reconnect with her creative side](https://livingwellwithepilepsy.com/life-with-epilepsy/creative-side.html) **Published:** June 29, 2018 **Author:** Guest Contributor **Excerpt:** Maternity leave found Shonet longing to go back to work. But a baby and a relapse in seizures made her rediscover her creative side to keep her mind active. **Content:** **[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/05/FB_IMG_1510029434476-300x300.jpg "shonet – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/portfolio/june-29-shonet-dsouza/attachment/fb_img_1510029434476)This post is part of the** [**Epilepsy Blog Relay™**](https://livingwellwithepilepsy.com/epilepsy-blog-relay)**, which will run from June 1 to June 30, 2018. Follow along!** #### Shonet rediscovers her creative side There is something about sitting out on the patio with music playing in the background and painting that picture of Elsa from Frozen (ok disclaimer: I do have a 4 year old ☺). That was me a year ago when I decided to play an active role in bringing some balance to my life and start reconnecting with some of the things that I loved. Growing up I played the piano, I sang, I danced, I painted and I read (a lot!). Fast forward to the 21st century, I worked, worked, worked, and worked. Much like many of us, I was caught up building a better life for myself without realizing I had become part of the rat race within the corporate world. I was doing the daily grind like it was second nature to me and before I knew it, my career had become my life. #### When career becomes your whole life I first started to realize this when I was on maternity leave in 2014. I had just given birth to my daughter and had taken the year off. Besides the typical tasks of looking after a new baby and dealing with the emotional and physical challenges of motherhood, I started feeling really bored of being home and longed to go back to work. I am a person who loves to be busy and needed something to do. But for the first time in years, I couldn’t think of anything other than things related to my work. I always had interests but didn’t really pursue them actively as I worked. My career and work had become such a huge part of my being that I didn’t know how to live a life without it, which was really sad. So I decided to start reading again and began to enjoy incorporating it back into my day. I went to the library regularly and rented out books I had wanted to read for a while. Before I knew it, it was time to go back to work and I slid right back into the daily routine of work and family life. I did keep up with my reading though, which was a step in the right direction. #### Back to square one In 2017, after 2 years of being seizure free, I had a seizure relapse which then set off a chain of seizures over the next few months. I was on the highest dosage of medication I could possibly be on and so my only option seemed to be taking some time off work to relax my mind, rest, and make a lifestyle change. My initial seizure journey began about 6 years ago with a nocturnal seizure, which then lead to complex partial seizures that I had on a regular basis. After several years of trying different medications, I finally managed to get them under control for 2 years. But this breakout seizure had now changed the game again. Given how career driven I was, I had to make one of the hardest decisions of my life and take time off. However, in hindsight, that advice from my doctor was one of the best things I ever did for myself. I put my health first and focused on how to work around this chronic illness that seemed to be a big part of my life. #### Rediscovering creativity During the first few weeks, I noticed my seizures instantly reduced however I started to get bored again. I started re-organizing areas of my home (p.s. organization is one of my passions and problems sometimes☺). While I did take the time to rest, relax and read, I picked one area of my home each day and started decluttering, donating and selling things I didn’t need. Working towards a minimalist lifestyle, I started to feel less stressed and more relaxed as days went by. I was naturally organized as a person, so it wasn’t too hard, but I still had a lot of stuff I just didn’t need or use. It’s amazing all the things we collect over time! As I was doing this, I came upon some old art pieces like stained glass, painted pots, calligraphy sketches, etc. that I had done growing up. This ignited a bit of a fire in me to get back into my creative side and explore those areas of my mind. I started thinking of other things I could do around the house that were creative. I decided to make candles from scraps of old candles….my own mishmash candles as I called them! I put together flower arrangements from the dried hydrangeas I had saved after the summer. I did cool DIY alterations on some of my clothes. I spent more quality time with my daughter by actively playing, colouring and painting with her. I enjoyed the activities even more than she did sometimes, so I did them even when she wasn’t around! Hence, colouring Elsa on the patio. As time went by, I started enjoying all of these little things I did and my seizures were close to none at this point. I really made a conscious effort to be present in everything I did and focus on each task one on one. I [slowed down my life](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/jun-18-ebr-posts/living-with-side-effects.html), planned my activities around my illness and reduced my stress as a result. In an attempt to maintain a healthy diet, I also tried to experiment with new and innovative recipes or make things my Mom made when she was around. [I started journaling](https://livingwellwithepilepsy.com/2018/aboutepilepsy/adjusting-to-a-medication-change.html) for the first time ever to free my mind and open myself up emotionally. I joined the gym and started doing Zumba, Yoga and strength training classes. Dancing and sweating it out while exercising was a huge bonus! At first I experienced a lot of pain and discomfort, especially from the strength training, as my muscles had deteriorated over time due to the medications (it’s a common side effect of AED’s). But I worked around that by taking a rest day and it got better over time. Tapping into my [creative side](https://livingwellwithepilepsy.com/2018/guest-posts/poetry-to-cope-with-adversity-and-a-life-with-tle.html) had somehow helped in calming down my mind and made me a happier person all around. I probably would not have done this if it wasn’t for my epilepsy diagnosis. #### A new perspective So fast forward to now, thanks to my change in lifestyle, I am on a much lower dosage and my seizures are under control. I have completely changed my perspective on life and see firsthand the value of living a more balanced lifestyle. **I don’t see my professional work as the only thing about me but as just one part of it. I actively ensure that I pursue my creative interests/hobbies and be more present for my family**. **I play an active role in spreading awareness around Epilepsy in any way I can.** While I would like to believe that I can overcome the limitations of my chronic illness, I now accept the reality that this will be my new normal and I plan my life around the symptoms and side effects of it. I feel like I have finally taken control of my life and chosen a better path of living a purposeful life. And that is MY FIGHT SONG! --- **NEXT UP:** Be sure to check out the next post by Jessica on how to participate in the Twitter Chat at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com). **TWITTER CHAT:** Save the date for the #LivingWellChat on June 30 at 7PM ET. [![epilepsy blog relay](https://livingwellwithepilepsy.com/wp-content/uploads/2018/05/june-2018-social-EBR1-150x150.png "june 2018 social EBR(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-participants/attachment/june-2018-social-ebr1)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our [generous sponsors and partners](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-sponsors-and-partners)! [Participate as a November Blogger ](http://bit.ly/Nov18EBRForm) [Become a November Sponsor ](http://bit.ly/1819EBRMk) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Life With Epilepsy --- ### [Epilepsy Blog Relay™: Leila's Epilepsy Resolution Update](https://livingwellwithepilepsy.com/life-with-epilepsy/new-years-resolutions/leilas-ideas-epilepsy-resolution-update.html) **Published:** June 16, 2017 **Author:** Leila Shields **Excerpt:** In January, I made a few Epilepsy Resolutions. I wanted to re-energize myself and do a better job at managing my epilepsy. I promised to keep you updated on how I’m doing...it’s not pretty, but here’s my first self-evaluation. **Content:** ***[![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/06/IMG_20150103_231530-300x300.jpg "IMG_20150103_231530 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/leilas-ideas/leilas-ideas-epilepsy-resolution-update.html/attachment/img_20150103_231530)This post is part of the [Epilepsy Blog Relay™](http://livingwellwithepilepsy.com/) which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!*** In January, I made a few [Epilepsy Resolutions](http://livingwellwithepilepsy.com/2017/leilas-ideas/leilas-ideas-epilepsy-resolutions.html). I wanted to re-energize myself and do a better job at managing my epilepsy. I promised to keep you updated on how I’m doing…it’s not pretty, but here’s my first self-evaluation. #### **Resolution 1: Consistently document my episodes** I told you that I was terrible at this. Update: I’m still terrible. I can come up with excuses: I’m busier at [work](http://livingwellwithepilepsy.com/2017/leilas-ideas/leilas-ideas-starting-new-job.html) with less time to pull out my spreadsheet, I’m planning a wedding and am focusing on that and not my brain, I simply forget to use my tool. Those excuses are useless though…it really comes down to me not prioritizing this part of my healthcare. I realize that I’ve come to accept a lot of the headaches/migraines/seizures that I have and just chalk them up to a part of my life. I have neglected to remind myself that I don’t have to accept these things; these events can potentially be decreased if I actually put work into keeping track of them. #### **Resolution 2: Use a pillbox** Confession: I’ve failed at this one. I didn’t get out my old pillbox and I didn’t purchase a new one. Again, there’s a slew of excuses I could use, but it won’t rid myself of the responsibility I have. I can say, though, that I’ve added additional pills since January and have successfully integrated them into my routine. I’ve only slipped up once, when I took 1 of my nighttime pills in the morning. Luckily, it didn’t cause too many problems other than complete exhaustion at work! Believe me, I understand the importance of taking my pills and not skipping, so I have not been neglecting my responsibility of taking them. They are one of the first things I do when I wake up and one of the last I do before I go to bed. Maybe I’ll go home today, fish out my old pillbox, and actually follow through with this one. #### **Resolution 3: Staying Away from Triggers** Good news: I have stuck to this resolution! Despite my initial thoughts, I was able to avoid both of my triggers. I cannot eliminate these triggers, as both of them are functions of my job. That being said, the one I thought I could not avoid worked itself out. The second, being spending too much time at laptop screen, I remedied. I take breaks at work and walk around my little office. Sometimes I put on some music and dance around! I also space out paperwork I can complete with a pen and paper so it is spread throughout my day, giving my eyes a break from the screen. I have also limited myself to my phone use after work. I don’t spend as much time on social media, so less time is spent staring at my phone screen. If I was tracking my episodes, I could tell you exactly how much this resolution has helped. I can’t do that, but I can say that I am not experiencing as many migraines. When I do, I am better able to determine a trigger. If I know that I have not spent much time behind a screen during the day, there must be something else causing it. #### **More Later** I wish I had a better report for you. Please don’t lose faith in me! I’m thankful to have done well with at least one of my resolutions and am optimistic that I can complete the other two. I’ll have another update in a few months for you. In the meantime, please let me know how you’re managing your epilepsy and encourage each other to take control of our health. --- ***NEXT UP: Be sure to check out the next post tomorrow by Carys at for more on epilepsy awareness. For the full schedule of bloggers visit [livingwellwithepilepsy.com](http://livingwellwithepilepsy.com/epilepsy-blog-relay).*** Don’t miss your chance to connect with bloggers on the #LivingWellChat on June 30 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/4cebf381fbce646cb0dbabef2348282b941c67524a3f03f08d6e328fa6c976cb?s=300&d=mm&r=g) Leila Shields Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania. [See Full Bio](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/leila.zorzie) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://lzorzie) **Categories:** New Years Resolutions **Tags:** Epilepsy Blog Relay, Epilepsy Everyday, Leila's Ideas --- ### [Epilepsy Blog Relay™: Beth's story shows love always has the last word](https://livingwellwithepilepsy.com/life-with-epilepsy/relationships/epilepsy-blog-relay-beths-story-shows-love-always-has-the-last-word.html) **Published:** March 1, 2018 **Author:** Guest Contributor **Excerpt:** When my seizures returned after 10 years, I realized who I wanted to be by my side as my partner for the rest of my life. My epilepsy had put that into stark relief. My seizures helped me realize just how important it is to have people who love and support you when dealing with a condition like epilepsy. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/02/IMG_4472-1-768x1024.jpg "IMG_4472 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/epilepsy-blog-relay-beths-story-shows-love-always-has-the-last-word.html/attachment/img_4472)***This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay) which will run from March 1 to March 31, 20178. Follow along!*** #### A new diagnosis I sat in a hospital in Indianapolis, dazed, and on the phone with my sister. I had just had my first grand mal seizure in ten years, and was dealing with a new diagnosis of epilepsy. During our conversation, she asked me if I wanted her to let my boyfriend know what happened. I told her yes, knowing full well that he was at a family wedding in another state far away. #### Sometimes showing up is half the battle As I was sitting in the ER, some cousins of mine (well, second and third cousins) who lived in a town nearby showed up. It turns out my mother, who was in yet another state, had called them to tell them what had occurred. They very kindly offered to have me come home and stay with them while I recovered. I got to their home and immediately went to their guest room to sleep. I awoke, and my mom and a close family friend were walking in the door to my room. Turns out, as soon as I had the seizure, my mom got in a car and drove four hours in order to be with me and make sure I was okay. As I was sitting there talking to my mom, who should arrive but my boyfriend. I started crying, I was so surprised to see him. Turns out my sister caught him at the airport, and he was able to change his flight to come be by my side and fly with me back home. He didn’t want anyone to worry about me trying to navigate an airport in a post-seizure induced haze. #### A love that continued to grow In looking back, I realized it was at that moment that I knew who I wanted to be by my side as my partner for the rest of my life. My epilepsy put that into stark relief. It also helped me realize just how important it is to have people who love and support you when dealing with a condition like epilepsy. I had an entire village, across many states, going out of their way to help me. Since then, that circle of love has continued to grow. The boyfriend is now my husband, and constant protector. He helps to make sure I take my medicine, get enough sleep, and checks in if I just seem out of it on any given day. He has held my hand through more seizures and their aftereffects, has supported me as I’ve made changes in my career, that while mean I am going down the career ladder – nonetheless lead to a healthier me. He’s also been there by my side as we’ve brought a child into this world. A testament to our love, and proof that even in unexpected or hard circumstances, life and love always have the last word. --- NEXT UP: Be sure to check out the next post tomorrow by Jes Armstrong at [www.wishesformercy.com](http://www.wishesformercy.com). TWITTER CHAT: Save the date for the #LivingWellChat on April 2 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Relationships --- ### [Special thank you for Mother's Day](https://livingwellwithepilepsy.com/women-epilepsy/mothers-day/special-thanks-for-mothers-day.html) **Published:** May 2, 2018 **Author:** Leila Shields **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/04/LeilaMattWedding-0129-300x200.jpg "Leila+MattWedding-0129 – Living Well With Epilepsy") **Reflecting on my life with epilepsy, I remember the medications and how they made me feel, the hospital stays, and the many, many doctor appointments. This Mother’s Day, it’s time for a special thanks to my mom who was there through it all.** #### Looking back on the early days When I look back at my [life with epilepsy](https://livingwellwithepilepsy.com/about-epilepsy), countless things come to mind. I remember the medications and how they made me feel, the first time I could swallow a pill, the nervousness of [telling my classmates](https://livingwellwithepilepsy.com/2016/leilas-ideas/leilas-ideas-remembering-stigma.html) about epilepsy, the hospital stays, and many, many doctor appointments. Through all of those memories, a couple of things are consistent and one of the biggest ones is my mom. (Don’t worry Dad, you’re in there too–you’ll read about that later.) As I have adjusted to adulthood and managing [my epilepsy](https://livingwellwithepilepsy.com/2015/leilas-ideas/12975.html), I grow more and more thankful for all of the things my mom did to keep me as healthy as she could. Going to all those doctor appointments couldn’t have been easy and it must have been hard trying to keep all of my history straight. She is an amazing keeper of my records and shows me the notebooks she filled with details. I applaud her for sitting on hold with the insurance companies for hours and working with the[ insurance](https://livingwellwithepilepsy.com/2016/epilepsy-blog-relay/leilas-ideas-navigating-medial-insurance.html) representatives…the older I get, the more I appreciate her patience! #### Mom was a source of constant support There was a point in school where it was clear the seizures were hurting my functioning. I went from straight A’s in school to barely comprehending simple stories. My working memory was low and medications made my hands shake so bad, Mom bought me weights to wear on my wrists. When I started working with children, I gained insight as to how hard it must have been for her to watch this decline with little control over it. Though my medication was switched and I grew to higher functioning, I struggled to gain what information I lost during that time in school and find a friend group that fully accepted me. She calmed me while I experienced insomnia due to medication and watch me do “normal” things while constantly worrying about my well-being, never letting me see how difficult it must have been. #### Thank you on Mother’s Day and every day The coolest thing I notice when I look back at my younger days is the [never-wavering support from my mother](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/a-moms-perspective.html). She was at every appointment, [many activities](https://livingwellwithepilepsy.com/2015/leilas-ideas/walking-to-fight-epilepsy-stigma.html), each hospital stay, and all the pricks of blood work. I never noticed how tiring it must have been, how frustrating it was to see her daughter’s ups and downs, and how much she fought for me to have [a normal and functioning life](https://livingwellwithepilepsy.com/2013/aboutepilepsy/latest-update-sudep.html). The gratitude I have for her is never-ending and successfully navigate life because of each lesson I learned while watching her fight for me. Mom, in case I haven’t told you enough–thank you. ![author avatar](https://secure.gravatar.com/avatar/4cebf381fbce646cb0dbabef2348282b941c67524a3f03f08d6e328fa6c976cb?s=300&d=mm&r=g) Leila Shields Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania. [See Full Bio](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/leila.zorzie) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://lzorzie) **Categories:** Mothers Day **Tags:** epilepsy, Epilepsy in Everyday Life, Leila's Ideas, mother, Mother's Day, seizures --- ### [Epilepsy Blog Relay: Dad's turn for thanks on Father's Day](https://livingwellwithepilepsy.com/life-with-epilepsy/fathers-day/thanks-on-fathers-day.html) **Published:** June 15, 2018 **Author:** Leila Shields **Excerpt:** For Father's Day, this bride sends her Dad a note of thanks. **Content:** **This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from June 1 to June 30, 2018. Follow along!** #### Thanks to Dad Last month I wrote about how instrumental [my mom](https://livingwellwithepilepsy.com/2018/livingwell/mothers-day/special-thanks-for-mothers-day.html) has been to my success with epilepsy. This time, it’s Dad’s turn! My dad is one of the kindest people you can ever meet. He has given his time to teach Sunday school and build houses with Habitat for Humanity. He does more listening than talking and speaks with intent. He is super knowledgeable and will always help others. He has always made sure that our family is provided for and sets us all up for success. He taught me how to ski and throw a ball, how to ride a bike and passed on a love for roller coasters. I was the kid with no fear who would try just about anything once. [Epilepsy](https://livingwellwithepilepsy.com/about-epilepsy) leads us into the unknown, though. I have to imagine that my diagnosis was difficult for him. My diagnosis and subsequent medications threw a wrench into my development. The activities I once excelled at now were a challenge and the person I was developing in to was changed. I lost many things; among those was confidence. #### True dedication We always joke about how bad I was at softball–.000 batting average bad. I remember feeling low while going into the dugout game after game with absolutely no contact with the ball. [Softball life](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/epilepsy-blog-relay-alyssas-story-shadow-light.html) improved when Dad became my coach. I still didn’t play tremendously but I remember liking it more. I don’t know how I appeared at that point, but it was nice having someone who loved me in the dugout to make it easier to fail.[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/06/00083_p_17aq2trqaf0148-640x856.jpg "00083_p_17aq2trqaf0148 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/thanks-on-fathers-day.html/attachment/00083_p_17aq2trqaf0148) I took dance class for years. I recall the times when Dad took me very clearly. I think I just really enjoyed spending that time with him. I’m really thankful for those times. Dad’s work day could be pretty long and probably stressful. Sometimes he would fall asleep while waiting for me to finish. (Sorry if you didn’t want the world to know.) It confused me a little bit at the time but over the years it shows me how dedicated my dad was…and how tiring a long day of work is! #### Still in my corner As an adult, he still encourages me. He’ll send me encouraging emails, some with words to carry me through the day, some that contain dad jokes–we all know those quality quips. I’ve saved every one. When meds are really throwing me for a loop or I think about how different life might be if epilepsy wasn’t part of it, I read them through to help me through those times. Sometimes he sends me emails during those struggles without even knowing how much I need one. #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/06/LeilaMattWedding-0130-640x960.jpg "Leila+MattWedding-0130 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/thanks-on-fathers-day.html/attachment/leilamattwedding-0130) #### Unconditional love I can’t name all of the activities Dad and I did together. I could name many but I’m sure I’d miss some. That’s how Dad carried me through epilepsy problems. He helped distract me from the frustrations I felt (and maybe even his own). I think it’s a dad’s job to love and encourage their child unconditionally. I imagine that’s harder to do at some points. I don’t know how difficult it was to navigate all the changes from seizures and medications. I’m [forever thankful](https://livingwellwithepilepsy.com/2018/livingwell/mothers-day/note-of-thanks-to-mum.html) that he found a way and [gave me the confidence](https://livingwellwithepilepsy.com/2016/epilepsy-blog-relay/its-who-i-am.html) that has lasted into adulthood. Happy Father’s Day to all the dads out there. ![author avatar](https://secure.gravatar.com/avatar/4cebf381fbce646cb0dbabef2348282b941c67524a3f03f08d6e328fa6c976cb?s=300&d=mm&r=g) Leila Shields Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania. [See Full Bio](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/leila.zorzie) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://lzorzie) **Categories:** Fathers Day **Tags:** bride, father daughter dance --- ### [Sickness and Health: This couple's vows were tested just a month after the wedding](https://livingwellwithepilepsy.com/life-with-epilepsy/relationships/in-sickness-and-in-health.html) **Published:** July 30, 2018 **Author:** Leila Shields **Excerpt:** Our wedding was perfect, we said the vows, danced to some favorite songs, and enjoyed our ranch dressing fountain. Just a month later, I had a tonic clonic seizure. It was the first one in over a decade, and the first one my husband has had to witness. **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/01/LeilaMattWedding-0582-1024x683.jpg "Leila+MattWedding-0582 – Living Well With Epilepsy")*Our ranch dressing fountain was a dream come true Photo httpwwwjoeltphotographycom*#### The wedding day On September 16, 2017, I became married to my handsome husband and best friend. We said the vows, danced to some favorite songs, and enjoyed our ranch dressing fountain. It was a statement of our love for one another and devotion of our lives together: for better or worse, richer or poorer, in sickness and health. I still can’t stop looking at wedding pictures and reminiscing about the best day with the most wonderful man. #### The seizure October 17, 2017 is when I had a tonic clonic seizure. It was the first one in over a decade, and the first my husband has had to witness. All of a sudden, our wedded bliss was turned into a test of our vows. I never doubted the dedication to one another, but it’s difficult to be happy with life when it’s turned upside down. My medications began to change, bringing new side effects and new worries. My license was taken away, which threw my job into question, as it is one of the requirements. Matt was constantly worrying about my well-being, wondering when or if I would have another seizure, if the medication was working, what each odd movement or sound might mean as it relates to seizures, what testing would show, and how it changes his role. #### Taking on the challenge together One of the things that I love about my relationship with Matt is that we are partners. We support each other constantly and face life head on, hands held and heads up. Whatever we face, we face it together. But this left us on unequal footing. It was devastating to me to have a seizure and have my world rocked. Fortunately, I’ve been through this before. I’ve switched medications, gone through all of the tests, explained my experience to doctors, been on hold with the insurance company, etc. I know how to take the situation and deal with it by pulling emotion out and putting logic in. Dealing with this event was hard to face together, head on, because I was much farther ahead than he was. Again–I’ve been through it before. He hasn’t. #### Living with epilepsy It was really hard. We haven’t been tested in this situation. And, in just over the first month of marriage?! Come on, it seemed truly unfair. Honestly, in a way, it still does. Every change in medication, every weird stomach pain and headache, every EEG & MRI result is a test for us, individually and as a couple. But, every day I don’t have a seizure is a joy, causing us to celebrate in a new way that we didn’t have before. We have always been thankful that I had controlled seizures and never taken it for granted, but these celebrations are a bit more meaningful. Epilepsy is tough for everyone involved. It changes life for those closest to it. The great thing about love, though, is that it overcomes all–even epilepsy. ![author avatar](https://secure.gravatar.com/avatar/4cebf381fbce646cb0dbabef2348282b941c67524a3f03f08d6e328fa6c976cb?s=300&d=mm&r=g) Leila Shields Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania. [See Full Bio](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPGcgY2xpcC1wYXRoPSJ1cmwoI2NsaXAwXzM0M18xMDE2KSI+CjxwYXRoIGQ9Ik03Ljk5OTk5IDBDMTIuNDE4MyAwIDE2IDMuNTgxNzMgMTYgNy45OTk5OUMxNiAxMi4wOTAyIDEyLjkzMDMgMTUuNDYzIDguOTY5MjEgMTUuOTQxNFYxMC40NDQ3TDExLjEzMzQgMTAuNDQ0N0wxMS41ODIzIDhIOC45NjkyMVY3LjEzNTM5QzguOTY5MjEgNi40ODk0NSA5LjA5NTkxIDYuMDQyMjYgOS4zODY1NyA1Ljc1NjU2QzkuNjc3MjYgNS40NzA4NCAxMC4xMzE5IDUuMzQ2NjIgMTAuNzg3OCA1LjM0NjYyQzEwLjk1MzggNS4zNDY2MiAxMS4xMDY2IDUuMzQ4MjcgMTEuMjQyMiA1LjM1MTU3QzExLjQzOTQgNS4zNTYzOCAxMS42MDAxIDUuMzY0NjcgMTEuNzEyIDUuMzc2NDRWMy4xNjAzMkMxMS42NjczIDMuMTQ3ODkgMTEuNjE0NSAzLjEzNTQ3IDExLjU1NTQgMy4xMjMyNEMxMS40MjE0IDMuMDk1NTQgMTEuMjU0OCAzLjA2ODgzIDExLjA3NTcgMy4wNDUzN0MxMC43MDE2IDIuOTk2MzYgMTAuMjcyOSAyLjk2MTU0IDkuOTcyOTIgMi45NjE1NEM4Ljc2MTYgMi45NjE1NCA3Ljg0NjE0IDMuMjIwNjggNy4yMDcxMyAzLjc1NzQ2QzYuNDM1OTIgNC40MDUyNyA2LjA2NzM5IDUuNDU3NDggNi4wNjczOSA2Ljk0NjU5VjcuOTk5OTlINC40MTc3MlYxMC40NDQ3SDYuMDY3MzlWMTUuNzY0NEMyLjU4Mjg4IDE0Ljg5OTkgMCAxMS43NTE4IDAgNy45OTk5OUMwIDMuNTgxNzMgMy41ODE3MyAwIDcuOTk5OTkgMFoiIGZpbGw9IiM0MzQ5NjAiLz4KPC9nPgo8ZGVmcz4KPGNsaXBQYXRoIGlkPSJjbGlwMF8zNDNfMTAxNiI+CjxyZWN0IHdpZHRoPSIxNiIgaGVpZ2h0PSIxNiIgZmlsbD0id2hpdGUiLz4KPC9jbGlwUGF0aD4KPC9kZWZzPgo8L3N2Zz4K) ](https://www.facebook.com/leila.zorzie) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://lzorzie) **Categories:** Relationships **Tags:** epilepsy, Epilepsy in Everyday Life, Leila's Ideas, love --- ### [Epilepsy Blog Relay: Coach gets honest about her epilepsy diagnosis](https://livingwellwithepilepsy.com/aboutepilepsy/seizure-types-syndromes/grand-mal-tonic-clonic/metabolic-therapist-goes-public-about-an-epilepsy-diagnosis.html) **Published:** June 4, 2022 **Author:** Guest Contributor **Excerpt:** Despite fear and shame from stigma, this metabolic coach is ready to go public about her epilepsy diagnosis. Read how she found the strength to share her story. **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/04/heart-1024x706.jpg "heart – Living Well With Epilepsy") ## Going public about epilepsy I am ready to COME OUT to you. I’m ready to go public about my epilepsy diagnosis. I’m stretching to accept and advocate for Epilepsy, aka my “seizure disorder” that began 6 years ago. My first seizure happened while sleeping. I had an aura that night before bed, which is a unique “funny feeling” that signals a seizure is coming. It felt like déjà vu to me and I’d never really felt that before. I woke in the morning after two [grand mal seizures](https://livingwellwithepilepsy.com/category/types-of-epilepsy/grand-mal), and was taken to the hospital for testing. Nothing was found on the brain scans and I was told to go home and rest. Six months later when I was overworked and running on fumes, it happened again and I was formally diagnosed as having epilepsy. Damn. I denied this term and focused on being “seizure free” thru diet and lifestyle. ## How did this happen? Did this happen because I was [“plant based”](https://thehappypear.ie/) for so long, mal-nourished and developed insulin resistance? Was it because I was burnt out and in a toxic relationship trying to prove my worth thru building a community wellness retreat? What about taking all those antibiotics, asthma meds and experimental birth control as I grew up? I’ve spent countless hours in attempt to figure out why I was diagnosed with epilepsy, yet what matters most are the huge strides I’ve made with medical ketogenic therapies to keep my seizures at bay. ## Is epilepsy a liability? Another major adjustment — soon after all this began, I was seen as a liability. I was asked to leave what I’d built at Hawaiian Sanctuary. It didn’t make sense at the time, yet five years later, I acknowledge that as good news. I’ve had a lot of success and made plenty of mistakes too. I don’t like to have seizures, yet each has forced me to slow down and reassess what’s important. ## Feelings of embarrassment and shame For the last six years I’ve looked at epilepsy when I’ve had to, yet otherwise attempted to not really tell people as I’ve felt embarrassed and shame. I’d even lost the privilege to drive for two years after a seizure post intense workout. I didn’t know that going all out can aggravate the nervous system, so now I stick to yoga and long walks. I’ve come to understand how harmful stress can be on our precious organs. ## Surprise seizure I want to tell you that earlier this spring I had a seizure and it surprised me. I had only 2 last year which was a success since the two years prior I dealt with more. I’ve felt further and further away from these scary black out convulsive experiences where I awaken with memory loss, a bitten tongue + aches and pains. That Monday night was different though as I felt funny after a long day’s work. I was finishing up with a client program where we shared a wonderful in home dinner together. I had worked from sunrise that morning without a break and that gear isn’t sustainable for me anymore. I remember seeming to hit a wall once we were done with dinner, and I excused myself. I let myself cry a little tear on the way home, feeling proud of our progress. I caught myself when the emotion felt overcoming and remembered that seizure post intense workout and tried to relax in the moment. “What a strange memory in this moment” I thought to myself and didn’t want to attract another seizure. It had been so long. Nevertheless, that night I woke up to my sweetheart Evan bringing me an icepack for my head and said I’d just had a seizure. My skull and neck were aching and I felt scared and disappointed. Had that premonition earlier been an aura? ## About Terra After this recent seizure, I was forced to slowed down. I felt nervous then insecure, yet so grateful to be loved and supported while in recovery. I’m choosing to share all this because I want you to know more about me. Yes, I have expert skills in [metabolic therapies](https://www.themetabolictherapist.com/) to support medical conditions. Although I’m not a doctor, I can work with you and your doctor to overhaul your diet and lifestyle to take less meds and live with less pain and suffering. I’ve done it in my own life and have helped dozens of others in 1:1 and group programs to re-align their fuel + lifestyles. PLUS I’m available for more than carb counting and pantry purges. I’ll continue to promote removing nasty seed oils that cause free radicals in your beautiful body, yet my coaching programs expand far beyond [ketogenic therapies.](https://charliefoundation.org/) Here’s my passionate WHY. I am committed to a heart-centered coaching focused on service and connection. Trust me, burn-out has real consequences to life and all relationships. The more we slow down to SELF CONNECT, the more we tune in to inner wisdom that is present to guide us. ## Learn More Are you feeling stress? Are you wanting to be listened to without judgment? Do you want a safe place to explore areas of your life that are challenged? A lot happens when people sit with me. I will help you transform your life. This message is an action step to extend fierce loving into powerful relationships. I am cheering you and me on to success. I deeply appreciate your engagement today and would love to read your courageous comments and shares. Stay tuned for more on living well, accepting what is and committing to fierce love. [Coaching with Terra ](https://www.themetabolictherapist.com/) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Grand Mal / Tonic Clonic --- ### [What the EF Podcast featuring Dr. Alexa King](https://livingwellwithepilepsy.com/women-epilepsy/pregnancy/what-the-ef-podcast-featuring-dr-alexa-king.html) **Published:** February 7, 2023 **Author:** Landis Wiedner **Content:** ## So…can I have kids? ![Dr. Alexa King](https://livingwellwithepilepsy.com/wp-content/uploads/2023/02/DrKing_5-1024x1024.jpg "DrKing_5 – Living Well With Epilepsy")Dr. King educates us on that burning question that many of us females have…[can I have kids](https://livingwellwithepilepsy.com/2022/personal-epilepsy-stories/epilepsy-and-pregnancy.html "Epilepsy Blog Relay: On Epilepsy and Pregnancy"), and if so, what is that going to look like for me? An epileptologist who specializes in women’s health, Dr. King shares her vast knowledge on birth control, [med changes/adjustments](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/adjusting-to-a-medication-change.html "Epilepsy Blog Relay: Five tips for adjusting to a medication change"), and how to work with your own doctor during this journey. Listen here: [Spotify](https://open.spotify.com/show/4rOV3qJjUwJxY7gKCl8z6m), [Apple](https://podcasts.apple.com/us/podcast/what-the-ef/id1649361278), [Google Podcasts](https://podcasts.google.com/feed/aHR0cHM6Ly9hbmNob3IuZm0vcy9iM2RjZjlhYy9wb2RjYXN0L3Jzcw), [Amazon Music](https://music.amazon.com/podcasts/f1311e20-cb73-44de-b5f0-14d4457e6002/what-the-ef), & [Audible](https://www.audible.com/pd/What-the-EF-Podcast/B0BHZLVX7D?qid=1665590894&sr=1-1&ref=a_search_c3_lProduct_1_1&pf_rd_p=83218cca-c308-412f-bfcf-90198b687a2f&pf_rd_r=MSGJFHHWHH7GTYXJA9PK) Subscribe to What the EF podcast here: [whattheefpodcast.com](https://www.whattheefpodcast.com/) ![author avatar](https://secure.gravatar.com/avatar/19f5d1347b7f55432fb2ccf0b0547690de128dddd6f088aac79df9f670cd34f1?s=300&d=mm&r=g) Landis Wiedner Landis is a Chicago-based writer, whose work has been featured on [NBCNewsTHINK](https://www.nbcnews.com/THINK), [Wired](https://www.wired.com/) and [Chicago Tribune](https://www.chicagotribune.com/). She is a writer and Editor for Living Well With Epilepsy. Landis brings a humorous perspective to life with epilepsy. Diagnosed at 32 years old, she sheds light and laughs on managing a new life with seizures. Landis strives to create a touchstone for the chronically ill and those who support them. She is currently finishing a humorous memoir, “My Brain Tumor’s Boyfriend.” [See Full Bio](https://livingwellwithepilepsy.com/author/landiswiedner) [ ](https://livingwellwithepilepsy.com/author/landiswiedner) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://twitter.com/BillieTopanga) **Categories:** Pregnancy **Tags:** epilepsy, pregnancy and epilepsy, seizures --- ### [Epilepsy Blog Relay: Women with Epilepsy](https://livingwellwithepilepsy.com/women-epilepsy/women-with-epilepsy.html) **Published:** March 3, 2023 **Author:** Jessica K. Smith **Excerpt:** Women with epilepsy have found that our seizures are directly impacted by everything from hormones during puberty to pre-eclampsia during pregnancy. **Content:** ## [![](https://livingwellwithepilepsy.com/wp-content/uploads/2011/03/3C1C2C10-F1D5-4BC0-9558-A343B681B444_1_105_c.jpeg "3C1C2C10-F1D5-4BC0-9558-A343B681B444_1_105_c – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2011/03/3C1C2C10-F1D5-4BC0-9558-A343B681B444_1_105_c.jpeg)Women with Epilepsy Epilepsy is a chronic condition that can last a lifetime. Women with epilepsy have found that the disease raises an additional set of issues. These issues can range from how you feel about yourself to whether or not you want to have children to aging well. In honor of Women’s History Month, and of course all the women who have struggled with these decisions, this post is dedicated to the ladies out there. ## Feeling Hormonal As if it wasn’t bad enough that we bleed once a month, research is now being done to determine what sort of impact the hormones, estrogen and progesterone, have on brain activity (including seizures). This can have a marked impact as puberty begins. If you find that your seizures seem to get worse around the time of your period, be sure to mention it to your neurologist. You may have what is referred to as [Catamenial Epilepsy](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3469236/). ## Time to get sexy When you are feeling a little sexy, be sure to consider your whole body. Epilepsy and Sex are a fine pair but you will need to be sure that you are taking all the necessary precautions. Sounds romantic doesn’t it. Some anticonvulsants can make birth control pills less effective putting you at risk for pregnancy. Conversely, some birth control can make some anticonvulsants less effective putting you at risk of having a seizure. ## **Pregnancy and Epilepsy** If you are concerned about taking your medication during pregnancy be sure to read all the literature available (there is new information every day). Depending on your medication, and when you become pregnant, and the research available at the time, you may be able to stay on your medication, and/or your doctor may recommend an increase in dosage. Additionally, you may want to consider adding Folic Acid to protect you and any potential baby from a neural tube defect. Women with epilepsy are at higher risk for pre-eclampsia and post partum depression. As such, be sure to talk through these risks and strategies to handle them with your health care provider. ## After the baby comes As my dad used to say, “Pick your spots.” He just meant you can’t hold your breath through life, but you can be careful about the choices you make. Make sure friends and family know about your epilepsy so they can pitch in if need be. Having extra hands can be especially important when that baby won’t sleep for days on end. And we all know how important sleep is for people living with epilepsy. ## Aging well Since hormone patterns change during menopause it stands to reason that seizure patterns could change too. I’ve linked here for information on [Menopause and Epilepsy](https://practicalneurology.com/articles/2019-oct/women-epilepsy). I hope you find this helpful. Share where you are on your journey with epilepsy. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Women and Epilepsy **Tags:** #menopause, #womenandepilepsy, Pregnancy --- ### [Emily's Perspective: A review of "Dings," by Dr. Lance Fogan](https://livingwellwithepilepsy.com/epilepsy-news-and-research/emilys-perspective-review-dings-dr-lance-fogan.html) **Published:** July 30, 2015 **Author:** Jessica K. Smith **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2015/07/11745802_1619161835004024_4763853340448691942_n.jpg "11745802_1619161835004024_4763853340448691942_n – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/11745802_1619161835004024_4763853340448691942_n) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2015/07/11755926_1619161825004025_8053600949987996257_n.jpg "11755926_1619161825004025_8053600949987996257_n – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/11755926_1619161825004025_8053600949987996257_n) On the 31st of May 2015 I received a book written by Dr. Lance Fogan. He had been in touch with me the week before and told me he wanted to send a free, signed copy for me to read. He was inspired to do so after he read about me. I was delighted. As I opened it up, I read the message “For Emily, a champion in raising Epilepsy awareness, Lance May 31 2015”. I was so happy. #### Dings I read it straight away and I didn’t want it to end! The book is titled ‘Dings’. It is a short novel about the chronic Neurological condition, [Epilepsy](http://livingwellwithepilepsy.com/epilepsy-101). Lance is a retired Neurologist and he wrote this book with the intention of reaching out to people in order to raise awareness. The book portrays the voice of a mother whose 8 year old son begins having seizure-like symptoms. As a reader, you get the chance to accompany the family in the story as they travel their fascinating clinical and emotional journey to help their son. At the end of the book there is a practical epilepsy glossary, which is useful for the reader. The novel begins with Conner suffering from a [generalised](http://livingwellwithepilepsy.com/diagnosis) attack. Not all seizures can be easily defined as either focal or generalised. Some people have seizures that begin as focal seizures but then spread to the entire brain. Other people may have both types of seizures but with no clear pattern. This is what makes the book even more enlightening; you get the chance to learn about different types of attacks. Conner is rushed to the emergency department as he experiences a prolonged post-ictal phase. You may have heard of this as I have suffered from this state many times. Post-ictal state is the altered state of consciousness after an epileptic seizure. The family goes through hell with Connors health and it really hit home for my own family. I found the story so relatable and I am so thankful that this book was written, as I truly believe it will help many people around the world. Conner’s dad, in the novel, is on a combat tour in Iraq. The doctors and teachers assume Conner’s stress and anxiety over his father at war have restricted his school work, and they don’t take into account is seizures. His mother, Sandra, is resentful that she has to deal with her son’s problem alone. Conner then begins to have blank outs that are not understood or appreciated. His school friends think that he acts strange sometimes. A psychologist identifies the boys’ anxieties and works to help Conner lower his stress levels. Later on in the novel Sandra’s husband returns from Iraq, she can’t wait to have him back, not only because she misses him but because she will finally have some support. Things don’t get much better, She recognizes Sam’s PTSD symptoms: he begins to drink more, he snaps at the family and has bad dreams, but he denies anything is wrong. We follow the family’s journey, do they manage to work things out to keep the family together? #### A Novel for Everyone Dr. Fogan had something important to say and he said it incredibly well. I know for sure that parents, teachers, children, friends, and anyone who works with children will benefit from this amazing novel. For my Mum it is an eye-opening book, and even so for me as I live with the condition myself. It is a good read; not only does it raise awareness, but it also offers hope. It is a book that I will never forget. Thank you Dr. Fogan for this amazing book & gift. #### Get your own copy You can buy Dr. Fogan’s book as an [e](http://www.amazon.com/Dings-Lance-Fogan/dp/1626463042)[-copy or hardback](http://amzn.to/1h6pBUN). Please let me know if you read it, I’d love to hear everyone’s reviews too! ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** News and Research **Tags:** #epilepsy #seizures, Emily's Perspective, Epilepsy Awareness --- ### [Emily's Perspective: Thoughts on the show "Epilepsy & Me"](https://livingwellwithepilepsy.com/epilepsy-news-and-research/thoughts-on-epilepsy-me.html) **Published:** August 27, 2015 **Author:** Emily Lawrence (Nee Donoghue) **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2015/08/Screen-Shot-2015-08-15-at-14.39.13-300x209.png "Screen Shot 2015-08-15 at 14.39.13 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-news-and-research/thoughts-on-epilepsy-me.html/attachment/screen-shot-2015-08-15-at-14-39-13) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2015/01/009-e1420909268794-300x200.jpg "009 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/aboutepilepsy/newlydiagnosed/new-to-epileptic-seizures.html/attachment/009) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2015/03/EDDSC_0010-e1427647721160-300x200.jpg "Young Epilepsy Awards 2015 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-stories/emilys-perspective/emilys-perspective-at-the-young-epilepsy-awards-2015.html/attachment/eddsc_0010) #### Living with Epilepsy It’s scary, living in fear, living the unknown, not knowing when your next seizure will strike, if it’ll strike again at all. That’s what it’s like, living with an invisible disability. It’s hidden and sometimes, without warning, it can strike. I’ve lived the last 11 years of my life with [Epilepsy](http://livingwellwithepilepsy.com/epilepsy-101), walking through school, college, [work](http://livingwellwithepilepsy.com/2015/emilys-perspective/emilys-perspective-back-to-the-working-world.html), walking down the street, working in the classroom or helping people at work when one of my seizures has struck me. You [don’t know](http://livingwellwithepilepsy.com/2015/leilas-ideas/epilepsy-stigma-why-leila-is-tackling-this-obstacle-in-her-own-way.html) what people will say or how they will react. [![Young Epilepsy Awards 2015](http://livingwellwithepilepsy.com/wp-content/uploads/2015/03/EDDSC_0010-300x200.jpg "Young Epilepsy Awards 2015 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/03/EDDSC_0010-e1427647721160.jpg)For years I have felt alone with this condition, but then I found Young Epilepsy. They honestly changed my life by changing the way I thought about and saw myself. I am proud to say I have helped them fundraise, taken part in their event, even got the chance to attend their Champion Awards in London, which you can read about [here](http://livingwellwithepilepsy.com/2015/emilys-perspective/emilys-perspective-at-the-young-epilepsy-awards-2015.html). #### Epilepsy & Me On the 29th of July, Young Epilepsy surprised everyone with the news that they were going to be on TV! [Epilepsy & Me](http://stpiers.education/) was a short film about people who have extreme forms of Epilepsy, cases where their seizures can be a daily occurrence and they have to be watched 24 hours a day. In this film viewers follow four young people at a crucial point in their lives when their futures are being decided. This hit home for my family and me, and I couldn’t wait to see it. When people’s lives are not controlled by a condition or a disability, they are able to finish school, college or [university](http://livingwellwithepilepsy.com/2015/leilas-ideas/getting-an-advanced-degree-with-epilepsy.html) freely without having to think about what will happen in the next minute, let alone the next year. In the show we meet Jack, Amy, Olivia, and Thomas. When meeting 21 year-old Jack, we learn that he rarely gets through a day without having a convulsive seizure. He needs constant supervision, but is determined to take his new girlfriend Olivia out on a date – which is made even more complicated when he has to bring his support worker along. Amy, 24, is leaving her residential college and needs to find somewhere to live, but where will be safe, happy and allow her more independence? Olivia is 21 years old and hasn’t had a seizure for four years and wants to prove to others that she’s ready to learn to drive – something most people around her believe isn’t possible. And 14 year-old Thomas has recently developed epilepsy because of a newly discovered brain tumour. #### [![Screen Shot 2015-08-15 at 14.39.13](http://livingwellwithepilepsy.com/wp-content/uploads/2015/08/Screen-Shot-2015-08-15-at-14.39.13-300x209.png "Screen Shot 2015-08-15 at 14.39.13 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/08/Screen-Shot-2015-08-15-at-14.39.13.png)St. Piers College: Supporting Students Young Epilepsy has a [college](http://college.youngepilepsy.org.uk/) which is shown to us on the TV series. Many of the young adults at the college also have learning and behavioural difficulties as well as specific medical or physical requirements. At St Piers College they are able to thrive, thanks to a calm, structured, safe environment and the support of a team of highly experienced professionals. In addition to the college, the organization has a non-maintained special school for pupils aged five to 19. It has state-of-the-art facilities, highly skilled staff and a warm, caring atmosphere. It’s a fantastic place for children with neurological conditions and behavioural difficulties to learn new skills, grow in confidence and make new friends. The children in Young Epilepsy’s school – some as young as five – are living with the most severe epilepsy and associated conditions, experiencing up to 40 seizures a day. Their current school is becoming unfit for their students complex needs and desperately needs replacing. As a result Young Epilepsy have to turn young people away, some of whom have nowhere else to go. #### Sharing the journey of Epilepsy The program was an emotional journey for everyone involved, and I couldn’t wait to share this coverage with you. If you have not yet seen the show, go over to BBC [iplayer](http://www.bbc.co.uk/iplayer/episode/p02w1yft/epilepsy-me) to catch up, it is worth it. #### If you watched the program, leave a comment with your thoughts about it! To donate to Young Epilepsy, follow the following link: To watch the documentary Epilepsy & Me, use one of the following links: In the UK: In the US: ![author avatar](https://secure.gravatar.com/avatar/5523d28ae8bbaedc9d082d51d29393ca490379cd31464b99ab3c7d50a49362ac?s=300&d=mm&r=g) Emily Lawrence (Nee Donoghue) 25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England. Emily's Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10. Based in UK. [See Full Bio](https://livingwellwithepilepsy.com/author/emilyd) [ ](https://livingwellwithepilepsy.com/author/emilyd) **Categories:** News and Research **Tags:** Emily's Perspective, epilepsy, living with epilepsy, seizures, young epilepsy --- ### [Emily's Perspective: Parenting with Epilepsy](https://livingwellwithepilepsy.com/women-epilepsy/parenting-with-epilepsy.html) **Published:** October 6, 2015 **Author:** Emily Lawrence (Nee Donoghue) **Excerpt:** Many people living with Epilepsy are also parents. In this article, I offer suggestions for parenting while managing Epilepsy. **Content:** #### [![DSCN1032](http://livingwellwithepilepsy.com/wp-content/uploads/2015/10/DSCN1032-e1444094893733-300x281.jpeg "DSCN1032 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2015/emilys-perspective/parenting-with-epilepsy.html/attachment/dscn1032)Parenting with Epilepsy In this month’s column I’d like to talk about parents living with Epilepsy. Children need answers. If epilepsy or another health problem affects you as a parent, it is best to give the facts and let your child ask questions. Epilepsy is like any other condition; it affects everyone. It is often found that your relationship will be strengthened when you communicate with each other. One of my biggest tips is to tell the truth. Explain the severity of your Epilepsy, explain what type you have, and how it may affect you. #### Kid-Friendly Language Be sure to use language and explanations that are appropriate for children’s ages. My brother was 7 when I began having seizures, I remember him being so confused before we got answers. I was so upset that I had to explain to him that I had an incurable condition because, at the time, I didn’t understand it myself. I didn’t know how it was going to affect my life and those around me. Mum told him all about it at the time. When you explain to your child, try not to use complex medical terms that are hard for kids to understand; even now when I use terms like Status epilepticus or aura, ictus, and postictal states people look at me in a confused manner. You know your children best. Just speak to them in the same terms you would use to talk about other things. #### Be Curious Encourage your children to ask questions, no matter how old they are. If you are confused about anything yourself, try getting a brochure on Epilepsy terms, facts and statistics so you and your family always have something to look at for answers. You can often find resources like these in the hospital (Neurology department). If your child asks something that you cannot answer, say that you will find the information as soon as you can. Then follow through. You may find the answer on [Living Well with Epilepsy](http://livingwellwithepilepsy.com/), or you may need to talk to the doctor or nurse. The most important message for any child is that people with epilepsy are just like everyone else. They deserve respect and understanding. #### Be Prepared If you feel your child is old enough to learn what to do during a seizure you could teach them the following [rules](http://livingwellwithepilepsy.com/epilepsy-first-aid): - stay with you, so they don’t get lost - get help from someone else, for example a neighbour or friend - help you themselves, if they know what to do. (try to teach them basic first aid) Some people wear [medical jewelry](http://livingwellwithepilepsy.com/2015/leilas-ideas/medical-id-bracelets-where-do-you-stand-on-the-issue.html) or carry an ID card saying what to do if they have a seizure. Even if children are too young to manage seizures, they may be able to tell other people that you have a card or medical jewelry. I always wear an ID wrist band, you can find these online or from a local store in your area. #### Caring for Your Child If you are worried about caring for your child whilst you are getting your Epilepsy controlled, speak with your doctor on what you could do to make you and your family feel safe. If you have any close friends or family members, don’t be afraid to seek their advice and help. One of the biggest concerns for parents is how to look after a small child when you have seizures. Some tips I have found when people have asked me for advice on caring for an infant are: - Try your best to give your child a bath when there is somebody else with you. This is because, if you had a seizure, the infant would be at risk. If you are alone, try to wash your child with water from a shallow bowl. - When changing or dressing your child, it is safer to do this on the floor rather than on a changing table or a bed. If you had a seizure your child is safer being at a lower height rather than being at risk of falling from a height. Remember it is always OK to ask for some [help](http://livingwellwithepilepsy.com/surviving). This doesn’t make you any less of a parent than those who do not have epilepsy. *“Without the dark, we’d never see the stars.”* ![author avatar](https://secure.gravatar.com/avatar/5523d28ae8bbaedc9d082d51d29393ca490379cd31464b99ab3c7d50a49362ac?s=300&d=mm&r=g) Emily Lawrence (Nee Donoghue) 25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England. Emily's Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10. Based in UK. [See Full Bio](https://livingwellwithepilepsy.com/author/emilyd) [ ](https://livingwellwithepilepsy.com/author/emilyd) **Categories:** Women and Epilepsy **Tags:** children, Emily's Perspective, epilepsy, parenting, seizures --- ### [Emily Donoghue shortlisted for Young Epilepsy Award](https://livingwellwithepilepsy.com/epilepsy-news-and-research/emily-donoghue-shortlisted-young-epilepsy-award.html) **Published:** April 11, 2016 **Author:** Jessica K. Smith **Excerpt:** The team at Living Well With Epilepsy is thrilled to announce that Emily Donoghue, who writes Emily's Perspective, has been shortlisted for a Young Epilepsy Inspirational Shining Star Award. **Content:** [![](http://livingwellwithepilepsy.com/wp-content/uploads/2016/04/105626590-e1460231439850-296x300.jpg "105626590 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/?attachment_id=14162)The team at Living Well With Epilepsy is thrilled to announce that Emily Donoghue, who writes [*Emily’s Perspective*](http://livingwellwithepilepsy.com/category/emilys-perspective) has been shortlisted for an [Inspirational Shining Star Champion Award](http://www.youngepilepsy.org.uk/for-parents-and-carers/help-and-advice/champions-awards-celebrating-achievement/champions-awards-2016-categories.html). This is one of the [Young Epilepsy](http://www.youngepilepsy.org.uk/) Champion Awards honoring those people, groups or organizations who have gone above and beyond, overcome challenges or supported those with epilepsy. The Inspirational Champion Award celebrates the achievements of a person living with epilepsy, between the ages of 20 and 25, who is a true inspiration to everyone around them. Emily reached out the other day to let me know that she had been shortlisted and I was so thrilled for her that I wanted to share our conversation with you. **Emily:** I have been shortlisted for the **Inspirational Shining Star** Champion Award! I just want to thank you so much for your continued support. Before I started writing for Living Well With Epilepsy I was so withdrawn, but now when I write, I feel like I am achieving something, and even if I help just one individual with my work then it is definitely something to keep up. I love what I do and without Living Well, I would never have continued with my work and I would never have achieved what I have today. **Jessica:** Yahoo!!!!!!! I’m so happy you were shortlisted. You offer the same inspiration for me! Without you, the site could not have grown as it has. You deserve the award. I am thrilled for you. **Emily:** Your words of wisdom and encouragement in each email mean a lot to me, so thank you for knowing exactly when to tell me what I want to hear, when I need to hear it the most. **Jessica:** You do the same for me. You are always right there with an encouraging note when I need it the most. If you missed any of Emily’s posts, you can find them all [here](http://livingwellwithepilepsy.com/category/emilys-perspective). Keep your fingers crossed for Em, she certainly deserves the award! #### If Emily’s words have inspired you please comment below. I’d love Em to hear from you. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** News and Research **Tags:** Awards --- ### [Emily's Perspective: On Auras](https://livingwellwithepilepsy.com/aboutepilepsy/seizure-types-syndromes/auras/emilys-perspective-auras.html) **Published:** April 29, 2016 **Author:** Emily Lawrence (Nee Donoghue) **Excerpt:** Aura is the term used to describe symptoms that may occur before a seizure. There are several different types and some of them might surprise you. **Content:** [![105626590](http://livingwellwithepilepsy.com/wp-content/uploads/2016/04/105626590-e1460231439850-296x300.jpg "105626590 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2016/epilepsy-news/emily-donoghue-shortlisted-young-epilepsy-award.html/attachment/105626590)Aura is the term used to describe symptoms that may occur before a seizure, but it is not uncommon for a seizure to not follow. You may have an aura from several seconds up to 60 minutes before a seizure. They vary massively for each individual, some will experience seeing bright lights, distortions in the size or shape of objects and hallucinations. I have met people who experience strange smells like metal or smoke, one lady told me she would smell strong coffee or toast before her seizure occurred. #### My Aura About 2 years ago I could wake up and know that I was going to have a seizure that day. I don’t know if this was because I was having seizures everyday so I just had a gut feeling, or whether it was an Aura from the start. I would get a feeling of fear; it was overwhelming and sometimes unbearable. I didn’t want to leave the house and getting to work felt impossible, I was crippled with Anxiety. Right before my seizure I would feel disconnected. It would feel as if I were watching my life from outside my body, and that I was not really there. At one point I could not even use the toilet because I felt like I wasn’t really there and it looked so big that I was afraid I would fall in and not be able to escape. I would often repeatedly do something with no control, like clapping my hands together, wipe them down or make chewing motions. It was odd as I could often interact with my family or colleagues, but I would feel confused. Since I’ve been taking a stable dose of Keppra and Lamotrigine I no longer experience an aura and my seizures are controlled, but sometimes I feel unsafe as I do not know if a seizure is going to occur or not. #### Your Auras I asked readers online what Auras they experience, or what their children experience. I found the most common symptom was a **visual** aura. These are characterised by visual hallucinations such as flashing or flickering lights, spots or other shapes. The second most common experience was a **Cephalic** aura. These are characterised by a sensation in the head such as light-headedness or headaches, and a feeling of disconnection. I’ve even heard from readers who said, “I get a deep sense of a very strong smell I believe to be sulfur like. Not that I have smelled sulfur but that’s what comes to mind. Is this normal or what have you read and what do you understand about the aura?” This is known as an olfactory hallucination. These make you detect smells that aren’t really present in your environment. I have met people who smell foul odours, and others smell pleasant ones such as coffee. #### What Auras do you experience? I am interested in hearing about **your** Aura experiences. **Sensory aura** A [**sensory aura**](https://www.epilepsydiagnosis.org/seizure/aura-overview.html) involves a sensation without an objective clinical sign. Sensory aura include the following types: - Somatosensory - Visual - Auditory - Olfactory - Gustatory - Epigastric - Cephalic **Experiential aura** An [**experiential aura**](https://www.epilepsydiagnosis.org/seizure/aura-overview.html) involves affective, mnemonic (memory) or perceptual subjective phenomena including depersonalization and hallucinatory events; these may appear alone or in combination. Experiential aura include the following types: - Affective - Mnemonic - Hallucinatory - Illusory #### How can auras help? Auras are not only helpful to individuals with Epilepsy, allowing them to get to a safe place in preparation for a seizure, they can also help healthcare professionals pinpoint the area of the brain where the seizure is originating. Since auras occur prior to a seizure, it’s thought that they may play a protective role allowing people to get to a safe place before the rest of their seizure occurs. #### Your turn Comment below to share your experience with auras. ![author avatar](https://secure.gravatar.com/avatar/5523d28ae8bbaedc9d082d51d29393ca490379cd31464b99ab3c7d50a49362ac?s=300&d=mm&r=g) Emily Lawrence (Nee Donoghue) 25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England. Emily's Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10. Based in UK. [See Full Bio](https://livingwellwithepilepsy.com/author/emilyd) [ ](https://livingwellwithepilepsy.com/author/emilyd) **Categories:** Auras **Tags:** Auras --- ### [Epilepsy Blog Relay: Lily on living with Temporal Lobe Epilepsy](https://livingwellwithepilepsy.com/aboutepilepsy/seizure-types-syndromes/temporal-lobe-epilepsy/lily-on-living-with-temporal-lobe-epilepsy.html) **Published:** November 13, 2018 **Author:** Guest Contributor **Excerpt:** Lily was diagnosed with Temporal Lobe Epilepsy in her 40s. She shares her journey from diagnosis to a treatment that works for her. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/11/library-pic-e1542077717859-640x426.jpg "library-pic – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/library-pic)***This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from November 1 to November 30, 2018. Follow along!*** #### Lily’s Story I am a 52 year old Mexican American woman living with epilepsy. I was diagnosed with epilepsy in 2014. My story is similar to others but we are all unique. I have temporal lobe epilepsy and suffer from absence and partial seizures. For 22 years, my career included work as a pre-school teacher, a nanny, an elementary public school teacher and later a university and college student advisor. My career was booming. I loved traveling, and driving long distance. #### Epilepsy diagnosis One day in October 2014, I was working with a student in the computer lab. As she sat next me, she asked me questions about what classes she could register for the Spring semester at San Antonio College. I went silent. I could hear her ask me if I was okay, but my mind was “floating”. There is not much recollection about that day. After being in the emergency room at Metropolitan Methodist Hospital in San Antonio for several hours, and the many tests given, I was admitted. I had several seizures during my five days at the hospital. Dr. Silva, a hospital neurologist, diagnosed the epilepsy. There were many unsure answers to the questions he asked. According my mother, I had several hospital stays as an infant for high fever, that resulted in febrile seizures. In my early child hood years, I was a slow learner, unable to make high grades, no A honor rolls. I recall several times in my life when I felt “out of my body” experiences. --- Related article: [**Survival tips for adults without a driver’s license**](https://livingwellwithepilepsy.com/2018/livingwell/survival-tips-for-no-drivers-license.html) --- #### VNS to manage seizures I took several anti epileptic medications, but the still made ER visits on a monthly basis. On January 23, 2018, I had surgery. I had a VNS implant, which has helped me cope with my seizures. I know I still have them, but at least now I know what to do before, during and after seizure activity. I have taught my best friend and my family what to do when I have an episode. --- **NEXT UP:** Be sure to check out the next post by Chanda at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/start-here) **TWITTER CHAT:** Save the date for the #LivingWellChat on December 6 at 12 Noon ET. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/11/EBR-Nov18-150x150.png "EBR - Nov18 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/november-2018-participants)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our generous sponsors and partners! [Become a Sponsor ](https://livingwellwithepilepsy.com/2018-19-media-kit-_all) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Temporal Lobe Epilepsy **Tags:** drivers license, epilepsy diagnosis, temporal lobe epilepsy, VNS --- ### [Emily's Story: Absence Seizures - Part 1](https://livingwellwithepilepsy.com/aboutepilepsy/seizure-types-syndromes/absence-seizures/emilys-story-absence-seizures-part-1.html) **Published:** March 3, 2013 **Author:** Jessica K. Smith **Content:** [![7](http://livingwellwithepilepsy.com/wp-content/uploads/2013/02/7-150x150.jpg "Emily – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2013/02/7.jpg)I sat in class, as my friends and I chatted about how we would love to be police officers. A police officer stood at the front of the room chatting about not talking to strangers. “Do you know why you shouldn’t talk to strangers?” the officer asked. My hand shot up, I knew the answer. I was so excited to talk to a police officer. But then my vision started to blur and I felt my eyes drifting back. I could hear my teacher say my name to answer the question, but I couldn’t reply…my hand remained up and that was it…I was completely absent…I couldn’t hear, speak or move.“Emily? Emily you can answer the question, put your arm down” Their voices were faint but I could hear them. My vision came back and I looked around the room only to find everyone looking at me. A few children were smirking and my teacher was looking at me confused, and the officer smiled to let me know she was listening. I began to cry, I was so confused and didn’t know how long I was absent for. I shook my head and my teacher took me out of the classroom. “Emily I think I need to talk to your Mum, I have noticed you go absent a few times today. Do you feel ok?” How could I explain what happened, if I didn’t know myself? How could I explain that I wasn’t being rude, and that I couldn’t control my daydreams. “I feel…[embarrassed](http://livingwellwithepilepsy.com/dealing-with-stigma)” At that point my teacher went to speak with my Mum, who conveniently worked at my primary school. That is my earliest memory of what is called Petit mal epilepsy. Petit Mal is an [absence seizure](http://livingwellwithepilepsy.com/diagnosis), commonly mistaken as a daydream, ignorance or tiredness, which is why my seizures went unnoticed for a while. I have always been a bit of a daydreamer. I use to plan stories in class, get home and jot a whole story out that I had planned in a Math class. But one day, as we were crossing the main road in Belper to go for a walk, I had a seizure. My parents were walking ahead with my younger brother, and I was walking behind them, talking to them but just walking slowly. As the lights turned from green to red, I went absent, in the middle of the road. I began to hear the horns from the cars, but that is all. 2 minutes that seizure lasted. My Mum took me to my GP a few days later, I didn’t know this but she was watching me at home to see how often I ‘daydreamed’. She calculated a total of 21 absences a day. My doctor asked me a few questions, for example; “Do you know when you are going to go absent?” or “what does it feel like?” “When does it happen most?” She referred me straight to the hospital where I had an EEG scan. EEG stands for [electroencephalogram](http://livingwellwithepilepsy.com/diagnosis). It is a recording of the ‘brainwaves’ – the electrical activity of the brain. The nurse told me to blow on a piece of paper, and it triggered off one of my seizures.I was petrified before my eeg, I had no idea what was going to happen, or why I was even there. I remember the lady put what looked like vaseline in my hair, onto my scalp and attached little stoppers to my head. I was then [diagnosed](http://livingwellwithepilepsy.com/diagnosis) with Petit mal epilepsy and photosensitive epilepsy-although I have photosensitive [epilepsy](http://livingwellwithepilepsy.com/epilepsy-101), lights don’t tend to trigger my fits off, they just make me feel like I am going to have a seizure. I was put on a medication called Ethosuximide which I gradually took more of, until I was on the highest dosage to suit me. I suffered from a few side effects like tiredness, weakness, headaches and sickness, but they went away after I was on a secure dosage. After two years, at the age of 13, I came off my medication and was seizure free. I was really happy to be able to do some of the things I was not allowed to do when I had epilepsy. I no longer had fits when swimming, or running, or anything, I was delighted. A year later, my fits started up again, completely out of nowhere. We went straight to hospital because we knew we needed to get them under control. I was falling behind with school work, I was going absent all the time and I was getting so embarrassed. People laughed as I stopped still in the halls and when I didn’t answer what the teacher was asking. This time my medication didn’t cause me any trouble and my fits stopped straight away. I was taken off Ethosuximide quite quickly-at the age of 16, my epilepsy returned quite viciously and my fits lasted longer and were more frequent. I was missing a lot of exam work and my paediatrician was worried that Ethosuximide wouldn’t be enough to control my fits as I was getting older, so they put me on Lamotrigine and Ethosuximide. It was a lot to deal with, especially as coursework was piling up and exams were getting closer. I was [violently ill](http://livingwellwithepilepsy.com/finding-a-treatment), I had night shakes, sickness, stomach cramps, nightmares, I suffered from hallucinations so bad that I saw clowns and spiders coming out of my walls. It was so real that I thought I was dreaming when my Mum told me there was nothing there. **Next up: Part 2 of Emily’s Story** ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Absence Seizures **Tags:** Personal Stories, Petit Mal, types of seizures --- ### [Chlo's Story: Newly diagnosed with absence seizures](https://livingwellwithepilepsy.com/aboutepilepsy/newlydiagnosed/chlos-story-newly-diagnosed-absence-seizures.html) **Published:** July 27, 2015 **Author:** Guest Contributor **Content:** #### [![WIN_20150719_210218](http://livingwellwithepilepsy.com/wp-content/uploads/2015/07/WIN_20150719_210218-300x169.jpg "WIN_20150719_210218 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/07/WIN_20150719_210218.jpg)The Beginning I was in the car with my mum driving to school like I usually do. I felt fine and I didn’t know anything would happen. In school, I had Science after break. I went into class and I remember feeling dizzy and weird; then I can’t remember anything else. All of a sudden, I saw a Teachers Assistant (TA) who asked me if I was okay. I remember feeling pretty confused. I was taken to the medical room and was asked lots of questions like “how are you feeling” and other stuff I didn’t know the answers to. I couldn’t really answer questions that well. The TA said I blacked out completely. I was confused! The medical lady phoned my mum to come pick me up. When my mum arrived, she took me home. That day, I just relaxed at home; at that point my mum thought I just had a virus. Later that evening, my grandma told me she was calling my name but I didn’t reply. I don’t remember hearing her at all. The school suggested mum take me to the doctor to find out what was going on. #### Finding Answers My mum took me to our local general practitioner (GP) who was really nice and understanding. She suggested I go to the hospital to see a specialist to get tested for [epilepsy](http://livingwellwithepilepsy.com/epilepsy-101). It took a few weeks for the letter to come through but it finally did. We were called into a room and asked questions by the specialist. In one of the tests, she made me hyperventilate to bring on a seizure. It worked and I had one. #### Newly Diagnosed I was [diagnosed](http://livingwellwithepilepsy.com/diagnosis) with [absence epilepsy](http://livingwellwithepilepsy.com/2013/epilepsy-news/emilys-story-absence-seizures-part-1.html). The specialist told my mum and I that I needed to have a [EEG](http://livingwellwithepilepsy.com/2015/emilys-perspective/emilys-perspective-help-child-eeg.html) done. I had lots of tests and it felt like we were there for ages! At the end it was finally time to go home and I was happy. #### Living Life With a New Diagnosis Life since being newly diagnosed with epilepsy is a lot different than it used to be. The first week after I was diagnosed was especially hard; I kept crying every day and didn’t have faith in myself. I’m learning to understand my epilepsy but I still feel pretty down about it sometimes. I also have Tourettes, Autism, Dyspraxia, OCD and a sleep disorder linked to my autism. I take a lot of tablets like Melatonin and Keppra 750 mg twice a day for my epilepsy. After being diagnosed 2 months ago, I’m used to it now. #### Let Chlo know she’s not alone by leaving a comment below. #### Or, [submit your personal story](http://livingwellwithepilepsy.com/share-your-epilepsy-experience) to Living Well With Epilepsy today. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Newly Diagnosed **Tags:** absence seizures, autism, newly diagnosed --- ### [Absence Seizures Won't Keep Andrea from Becoming a Full-Time Musician](https://livingwellwithepilepsy.com/aboutepilepsy/seizure-types-syndromes/absence-seizures/absence-seizures-wont-keep-andrea-from-becoming-a-full-time-musician.html) **Published:** March 13, 2021 **Author:** Jessica K. Smith **Excerpt:** Andrea has learned to cope with epilepsy and not let it get in the way of her aspirations to be a full-time musician. In fact, the group has recently released a beautiful piano cover of Boston’s "More Than A Feeling." **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/03/A-5849266-1499355798-5146.jpeg.jpg "A-5849266-1499355798-5146.jpeg – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2021/03/A-5849266-1499355798-5146.jpeg.jpg)Andrea is living with absence seizures but that doesn’t stop her from performing beautiful music with her band [Motion Device](https://motiondevice.net/). In fact, the group has recently released a beautiful piano cover of Boston’s “More Than A Feeling.” #### Andrea’s story Andrea has learned to cope with epilepsy and not let it get in the way of her aspirations to be a full-time musician. When people see [Andrea](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/jun-18-ebr-posts/andrea-prepares-for-a-tour-with-her-band-motion-device.html) in a Youtube video or live on stage with her rock band [Motion Device](https://motiondevice.net/), for the most part they see one thing – a musician. Motion Device is an independent hard rock band from Canada led by vocalist Sara Menoudakis, along with Josh Marrocco on guitar, Andrea Menoudakis on bass/keys and David Menoudakis on drums. They just released their fourth studio album titled ‘Motion Device IV’. The album was recorded, produced, mixed and mastered by the band in their own fan-funded recording studio. With over 100,000 social media fans and more than 20 million views on their channel, they’re quickly becoming one of the brightest up and coming bands in North America. #### Diagnosed with epilepsy At the age of seven, Andrea’s parents noticed she started having short staring spells. She would stop whatever she was doing for a second or two and then continue where she left off as if nothing happened. The staring spells began to occur more frequently and last longer than a few seconds as she grew older so the time came to seek out a medical opinion. After seeing her doctor, a few specialists and getting some tests done, she was diagnosed with epilepsy. The doctors told the family Andrea had been having absence seizures. Although the seizures seemed to disrupt Andrea’s life more often as the years passed by, she still managed to lead a normal life. Her family decided to try and avoid prescribed medication for some time and tried to treat her holistically but nothing really helped. However after a couple grand mal seizures her parents decided to again seek out medical treatment. Andrea was prescribed an antiepileptic drug by an epilepsy specialist and she’s been taking it ever since. It’s the only medication she takes and it seem to have helped keep the grand mal seizures under control and minimize her petit mal seizures as well – but she still has ‘daydreams’ as she calls them a few times a day. In fact, she composed a song on piano about epilepsy called [‘Daydream’](https://www.youtube.com/watch?v=6gxw8hARBX8) when she was sixteen.[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/06/MDKSPIC-640x427.jpg "MDKSPIC – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/jun-18-ebr-posts/andrea-prepares-for-a-tour-with-her-band-motion-device.html/attachment/mdkspic) It’s safe to say Andrea feels most comfortable with an instrument at her finger tips but there’s a lot more to her than meets the eye. After she finished high school with honours she immediately began working full-time as an instructor in an after-school tutoring program. Besides teaching, keeping busy with her music and playing in a rock band and of course Andrea has epilepsy. --- ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Absence Seizures --- ### [Emily's Perspective: Newly diagnosed with epilepsy or epileptic seizures?](https://livingwellwithepilepsy.com/aboutepilepsy/newlydiagnosed/new-to-epileptic-seizures.html) **Published:** June 2, 2021 **Author:** Emily Lawrence (Nee Donoghue) **Excerpt:** Are you new to Epilepsy? Have you had a recent diagnosis of epileptic seizures in your family? Maybe I can help ease the anxiety with this column. **Content:** [![Emily's Perspective: Epileptic Seizures](http://livingwellwithepilepsy.com/wp-content/uploads/2015/01/009-300x200.jpg "009 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/01/009.jpg)***This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay) which will run from June 1 to June 30, 2021. Follow along!*** Are you new to Epilepsy? Have you had a recent diagnosis of epileptic seizures in your family? Maybe I can help ease the anxiety with this column. #### Epileptic seizures Before diagnosis, when everything is still very raw, very scary, very “new,” it’s hard to get your head around things. It is important to understand that seizures take many forms. Before your doctor can prescribe the right treatment, he or she must figure out which type (or types) you have. Yes, you can have more than one type! The tests can be scary, but to help you will find the purpose of all the tests discussed in the [Diagnosis section.](http://livingwellwithepilepsy.com/diagnosis) These tests will help your doctor determine not just to tell whether you have epilepsy, but also to tell what kind. #### Seizure Types Over the years, after tests, scans, appointments, both Mum & Myself seem to have become experts in epilepsy! Well not quite, but it’s amazing what you learn from something so scary. One thing we have learned is the commonly used names for seizure types. Seizures are generally put into two major groups of seizures, primary generalized seizures and partial seizures, which maybe you knew already. #### Generalized Seizures The difference between these types is how and where they begin. For example, primary generalized seizures begin with a widespread electrical discharge that involves both sides of the brain at once. When I was first diagnosed, my EEG results showed epileptic discharges affecting my entire brain. I was originally diagnosed with having Petit-Mal seizures. Other types of generalized seizures include: myoclonic seizures and generalized tonic-clonic seizures. #### Partial Seizures Secondly there are partial seizures. These begin with an electrical discharge in just one limited area of the brain. Many different things can cause partial seizures, for example head injury, brain infection, stroke, tumor, or changes in the way an area of the brain was formed before birth. Many times, no known cause is found, but genetic factors may be important in some partial seizures. #### Simple vs. Complex [Partial seizures](http://epilepsy.about.com/od/typesofseizures/fl/Partial-Seizures.htm) can be broken down further, depending on whether a person’s awareness or consciousness (the ability to respond and remember) is affected. It may seem confusing, but it’s really good to know all the facts about different epileptic seizures, and it is also really interesting! A partial seizure can be categorized as two types: We firstly have the simple partial seizure. If you experience a simple partial seizure, you will not lose consciousness, and it will last for a minute or less. You will remember what happened after the seizure has passed. Then there is the complex partial seizure. If the seizure is complex, you may lose consciousness and you will not remember what happened. A complex seizure can last for a minute or two and may be preceded by a warning sign (an aura), such as a feeling of uneasiness or nausea. You may feel sleepy and confused afterwards, too. #### New “Normal” Having epilepsy does not make you weird, strange, odd, and it is not contagious. A lot of my old school friends thought they could catch it off me, they also thought I was very strange because I looked a bit “silly” when I was staring. My friends use to think that just because I didn’t jerk or convulse, that I couldn’t have epilepsy. But there are over 40 different types of seizures! When you first start a new school, job or if you are meeting new people, it is difficult to know whether you should tell them about your condition (or your child’s condition if they are in school). I feel it is VERY important to let people know, because if something were to happen it is useful to have an “eyewitness account.” If you had to go to the hospital the witness could explain what happened and whether or not you hurt yourself. But not everyone agrees. You will have to make that decision for yourself (or your child). I wear an epilepsy band that has my details on in case I have a seizure in public. #### It can happen to anyone Anyone can have a seizure or a diagnosis of epilepsy, no matter their class, their lifestyle, how much money they have, anybody! If anyone wants to learn more, or if you have any questions, please leave a comment below and we will get back to you. ### Are you newly diagnosed? Share your experience in the comments below. ![author avatar](https://secure.gravatar.com/avatar/5523d28ae8bbaedc9d082d51d29393ca490379cd31464b99ab3c7d50a49362ac?s=300&d=mm&r=g) Emily Lawrence (Nee Donoghue) 25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England. Emily's Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10. Based in UK. [See Full Bio](https://livingwellwithepilepsy.com/author/emilyd) [ ](https://livingwellwithepilepsy.com/author/emilyd) **Categories:** Newly Diagnosed --- ### [Jessica Smith, Founder of Living Well With Epilepsy, shares her epilepsy journey](https://livingwellwithepilepsy.com/aboutus-lwwe/jessica-smith-shares-her-epilepsy-journey.html) **Published:** November 4, 2020 **Author:** Guest Contributor **Excerpt:** Jessica Keenan Smith, Founder of Living Well With Epilepsy shares her epilepsy journey with fellow epilepsy advocate Derra Howard, Founder of Saving Grace Epilepsy Foundation. **Content:** [![Jessica K Smith](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767566881-271x300.jpg "IMG_3837 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/about-us/founder-jessica-keenan-smith/attachment/img_3837)*Jessica Keenan Smith Founder Living Well With Epilepsy* [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/Screen-Shot-2020-11-02-at-3.40.22-PM-150x150.png "Screen Shot 2020-11-02 at 3.40.22 PM – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/aboutus-lwwe/jessica-smith-shares-her-epilepsy-journey.html/attachment/screen-shot-2020-11-02-at-3-40-22-pm)*Derra Howard Founder Saving Grace Epilepsy Foundation*[Derra Howard, Founder of Saving Grace Epilepsy Foundation](https://www.sgepilepsyfdn.org/our-team), sat down with our founder, Jessica Keenan Smith to talk origin stories. Derra wanted readers to know more about Jessica’s journey with epilepsy. Below you will find Derra’s insightful and thought provoking questions: #### **Derra Howard: Tell me when you first had a seizure.** **Jessica Keenan Smith:** I had my very first seizure as a baby. It was a fever seizure. But my first “unprovoked” seizure happened when I was around age 12. It was the summer between seventh and eighth grade. I was preparing to go on vacation with my best friend’s family. I remember I was really looking forward to the trip. #### **DH: Where was it?** **JKS:** The seizure happened in the upstairs hallway in my childhood home. I remember the rough feel of the green rug underneath me as I my consciousness returned. It was a pretty severe grand mal or tonic clonic seizure. Sadly, I was wearing a bathrobe and heading to take a shower. Needless to say, I was not happy to find myself splayed out in the hallway for a bunch of medics and my parents. As a pre-teen that may have been the worst part at least initially. #### **DH: How did that affect you?** **JKS:** That’s a big question. I’m still trying to answer that one. I’ll be honest, there have been positives and negatives. Having epilepsy has affected my sense of self, and the lens through which I see the world. It has affected where I live and who I choose to love. It has impacted my brain, my bones, my blood and my skin. It has affected my career choices and what is important to me. #### #### #### **DH: Where you Alone?** **JKS:** My parents have talked about hearing a thud come from upstairs. They have talked about how my dad ran upstairs to see what was happening. He did not know he should not put anything in my mouth and with no regard for his own safety he put his own fingers in my mouth during the seizure. This was a problem because I had pretty intense braces at the time. The poor man walked around with bandages on his hands for a while. #### **DH: Are you seizure free now?** **JKS:** Yes, I have been seizure free for about 18 years. My last seizure was just after my daughter was born. #### #### #### **DH: What have you learned about your epilepsy?** **JKS:** Honestly, I have not learned too much about my own epilepsy. I am still diagnosed with idiopathic epilepsy. Over the years I have had CT Scans, MRIs, Video EEGs, Sleep deprived EEGs, EEGs at home and still nothing. It is true, I have been living with this disease for more than 30 years without answers. However, I am lucky to live in a first world country, with access to the latest medication, some of the best neurologists in the world and state of the art technology. This has made me wonder for many years how can we expect **[the 80% of people with epilepsy](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2912535/)** who are living in developing nations to thrive when they lack access to medication, medical care by a neurologist, or diagnostic technology. #### **DH: Are you on any medication?** **JKS:** Yes, I have been on a cocktail of anticonvulsant medications since I was a pre-teen. I still take medication every morning and night. I had one year that I was able to be free of medication. But sadly, my seizures returned, and I was put back on medication. I will be on meds for the rest of my life. My age, type of seizures and length of time I have been living with epilepsy all **[increase my risk for SUDEP](https://www.cdc.gov/epilepsy/about/sudep/index.htm)**. Thank you to Derra Howard for your interest in Living Well With Epilepsy. We are planning to co-host a Twitter Chat later this month. So watch this space for more information. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** About Us --- ### [What the EF: New Epilepsy Podcast](https://livingwellwithepilepsy.com/epilepsy-news-and-research/podcast/what-the-ef-new-epilepsy-podcast.html) **Published:** January 3, 2023 **Author:** Landis Wiedner **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/12/WTEF_CoverArt-1024x1024.png "WTEF_CoverArt – Living Well With Epilepsy") [What the EF](https://open.spotify.com/show/4rOV3qJjUwJxY7gKCl8z6m) is a podcast to share, laugh, and cry at all our epilepsy WTF moments. Laughter has made epilepsy survivable for me. My co-host, Lexi, agrees. Which is perfect because [we met at an epilepsy conference](https://open.spotify.com/episode/28atb1JANBwk2wsyuPyq1W?si=IckEXCZBRli-DpGhPHPmHA), where I had a seizure and believed the pillows smelled like pickles. Lexi assured me they did, and thus began our friendship–bonding over the weird sh\*t that happens with epilepsy. We believe that laughter facilitates learning and conversation sparks change, so we made an accessible and free resource to tackle the day-to-day and big picture challenges (just like Living Well With Epilepsy!). In [What the EF](https://www.whattheefpodcast.com/) podcast we discuss, point out, and chuckle at the ridiculous, [poignant](https://livingwellwithepilepsy.com/2011/epilepsy-news/stuart-ross-mccallum-shares-his-story.html "Stuart Ross McCallum shares his story in Beyond My Control"), heartbreaking, and sometimes funny stuff that happens with our condition. Our guests are experts, celebs, and regular folks who shed light on the annoying, [beautiful](https://livingwellwithepilepsy.com/2022/epilepsy-blog-relay/one-week-as-an-epilepsy-camp-counselor-changed-my-life.html "Epilepsy Blog Relay: One week as an epilepsy camp counselor changed my life"), and traumatic aspects of life with epilepsy. Like pickle pillows. Our goal is to create a touchstone (and hopefully a laugh) for people not only in the epilepsy sphere, but the chronic illness community as a whole. ## Seizen 1: January & February 2023 Starts January 10, 2023 with guest [DJ HAPA](https://www.hapaworld.com/)! Subscribe to our [newsletter](https://www.whattheefpodcast.com/) and you’ll be entered to win merch from epilepsy entrepreneurs [Temporal Tees](https://www.etsy.com/shop/TemporalTeesNY) or [Lola’s Luv](https://lolasluv.com/)! What the EF is available on: [Spotify](https://open.spotify.com/show/4rOV3qJjUwJxY7gKCl8z6m), [Apple](https://podcasts.apple.com/us/podcast/what-the-ef/id1649361278), [Google Podcasts](https://podcasts.google.com/feed/aHR0cHM6Ly9hbmNob3IuZm0vcy9iM2RjZjlhYy9wb2RjYXN0L3Jzcw), [Amazon Music](https://music.amazon.com/podcasts/f1311e20-cb73-44de-b5f0-14d4457e6002/what-the-ef), & [Audible](https://www.audible.com/pd/What-the-EF-Podcast/B0BHZLVX7D?qid=1665590894&sr=1-1&ref=a_search_c3_lProduct_1_1&pf_rd_p=83218cca-c308-412f-bfcf-90198b687a2f&pf_rd_r=MSGJFHHWHH7GTYXJA9PK) ## Drop us a line! Have a topic you’d like to hear about? Or just wanna say hi? Reach out to us via our website: [whattheefpodcast.com](https://www.whattheefpodcast.com/). ![author avatar](https://secure.gravatar.com/avatar/19f5d1347b7f55432fb2ccf0b0547690de128dddd6f088aac79df9f670cd34f1?s=300&d=mm&r=g) Landis Wiedner Landis is a Chicago-based writer, whose work has been featured on [NBCNewsTHINK](https://www.nbcnews.com/THINK), [Wired](https://www.wired.com/) and [Chicago Tribune](https://www.chicagotribune.com/). She is a writer and Editor for Living Well With Epilepsy. Landis brings a humorous perspective to life with epilepsy. Diagnosed at 32 years old, she sheds light and laughs on managing a new life with seizures. Landis strives to create a touchstone for the chronically ill and those who support them. She is currently finishing a humorous memoir, “My Brain Tumor’s Boyfriend.” [See Full Bio](https://livingwellwithepilepsy.com/author/landiswiedner) [ ](https://livingwellwithepilepsy.com/author/landiswiedner) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://twitter.com/BillieTopanga) **Categories:** podcast **Tags:** epilepsy, Epilepsy Awareness, epilepsy podcast, epilepsy resources, epilepsy stigma --- ### [Epilepsy Blog Relay: Is there more than one type of seizure?](https://livingwellwithepilepsy.com/aboutepilepsy/seizure-types-syndromes/is-there-more-than-one-type-of-seizure.html) **Published:** April 8, 2022 **Author:** Jessica K. Smith **Excerpt:** People will often ask if there is more than one type of seizure. The answer is yes and each one is unique (you know, like snowflakes...) which is annoying because it makes them that much more difficult to treat. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/04/pexels-miguel-a-padrinan-745364-1024x681.jpg "pexels-miguel-á-padriñán-745364 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2022/04/pexels-miguel-a-padrinan-745364-scaled.jpg)It’s true the seizure type most commonly seen in the media is the Grand Mal or Tonic Clonic seizure. You know the one, the full body thrashing about, turning slightly blue and possibly foaming at the mouth kind. Or as I like to refer to them “my special party trick.” But seriously, people will often ask if there is more than one type of seizure. The answer is yes and each one is unique (you know, like snowflakes…) which is annoying because it makes them that much more difficult to treat. This story is part of the Epilepsy Blog Relay™. ### There are different types of seizures? Yes, there are more than 40 known types of seizures a person may experience. A few of them are discussed below. There are also what are now referred to as epilepsy syndromes. ### Types of Seizures For the most part, seizures can be classified based on where in the brain the epileptic activity starts. #### Generalized Seizures Generalized seizures result from epileptic activity in both halves of the brain. Below are four major types of generalized seizures: tonic-clonic, absence, myoclonic, and atonic. - **Tonic-Clonic**: This type is what is commonly recognized as a seizure. As the name implies, it is split into two phases: the tonic and the clonic. In the tonic phase, the person will lose conscious and may fall to the floor. The body goes stiff as the muscles contract, and the person may cry out. Due to a lack of oxygen, the blood tends to be less red than normal, so the skin may turn blue. After the tonic phase, the clonic phase will begin. The muscles begin to tighten and relax in a cycle that results in jerking limbs. The person may lose control of his or her bladder. After the seizure (post-ictal state), the person’s muscles will relax and the body goes limp. Consciousness will slowly return, but the person may appear confused and may not be able to remember the seizure. This can last anywhere from a few minutes to several days. Recovery varies from person to person, but generally involves sleeping for a certain period of time. - **Absence Seizures**: When a person has an absence seizure, he or she loses consciousness for a few seconds. This can look like a person daydreaming, so these tend to be harder to spot. It is possible for a person with epilepsy who has this type of seizure to have upwards of one hundred absence seizures in the span of a day. - **Myoclonic Seizures**: Myoclonic seizures cause the muscles in the body to jerk. This can include the whole body, but the jerking is usually isolated to the limbs or neck and shoulders, and generally occurs on both sides at the same time. The person is unconscious for a brief period of time, but may not notice it. Myoclonic seizures can be mild or can be associated with the more extreme forms of epilepsy such as Lennox-Gastaut syndrome. - **Atonic Seizures**: Contrary to the muscle stiffness experienced during tonic seizures, atonic means “without tone”, so the person will lose all muscle function and fall to the floor. These are usually very brief and the person can generally stand up quickly without experiencing confusion. For more information on atonic seizures, visit Epilepsy Action’s website. #### Focal (Partial) Seizures Unlike generalized seizures, focal seizures affect one area (generally one lobe) of the brain. During a focal seizure, a person may be able to remain alert, but can still be confused as to what is happening. Below are examples showing symptoms of seizures specific to the temporal and frontal lobes. - **Seizures in the Temporal Lobes**: The [temporal lobes](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/nov-18-ebr-posts/kat-takes-on-temporal-lobe-epilepsy.html) contain functions such as hearing, speech, memory, and emotions, so symptoms of seizures in this area can vary greatly. Commonly, a person experiencing a focal seizure in the temporal lobe can be flushed or go very pale. He or she may see distorted objects or things that are not actually there. Additionally, smelling non-existent smells or tasting non-existent tastes can occur. The list of symptoms is very long, but these seizures can generally be identified by sensory experiences or emotions that seem out of place along with an inability to clearly process location or emotions. - **Seizures in the Frontal Lobes**: The frontal lobes contain functions including movement, emotions, and language. Typically, frontal lobe seizures result in very outward displays including stiffness of the limbs, thrashing arms, and crying out. Furthermore, the person may have problems forming or understanding speech. Sometimes these seizures may be incorrectly diagnosed as a condition other than epilepsy due to their dramatic appearances. For more information on frontal lobes, click here. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Seizure Types and Syndromes --- ### [Sunovion's Aptiom® gets FDA Approval as Monotherapy for Partial-Onset Seizures](https://livingwellwithepilepsy.com/aboutepilepsy/treatments/sunovions-aptiom-gets-fda-approval-as-monotherapy-for-partial-onset-seizures.html) **Published:** September 3, 2015 **Author:** Jessica K. Smith **Excerpt:** Sunovion Pharmaceuticals Inc. (Sunovion) announced on August 28, 2015 that the U.S. Food and Drug Administration (FDA) approved the supplemental New Drug Application (sNDA) for Aptiom® (eslicarbazepine acetate) as monotherapy for the treatment of partial-onset seizures. **Content:** [![Aptiom product photo](http://livingwellwithepilepsy.com/wp-content/uploads/2015/09/Aptiom-product-photo.jpg "Aptiom product photo – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/09/Aptiom-product-photo.jpg) ##### Disclusure: This post is for informational purposes only. Living Well With Epilepsy did not receive any product samples or compensation in exchange for this post. Sunovion Pharmaceuticals Inc. (Sunovion) announced on August 28, 2015 that the U.S. Food and Drug Administration (FDA) approved the supplemental New Drug Application (sNDA) for [Aptiom®](http://www.aptiom.com/) (eslicarbazepine acetate) as monotherapy for the treatment of [partial-onset seizures](http://livingwellwithepilepsy.com/epilepsy-101). This new approved indication allows APTIOM to be used as monotherapy in people who initiate treatment for the first time or convert from other antiepileptic drugs (AEDs) to APTIOM. This approval comes on the heels of a position paper published by the American Academy of Neurology (AAN) on the treatment of epilepsy. Within the position paper, the AAN notes: *“The AAN supports the use of newer-generation anticonvulsant drugs in the treatment of epilepsy. Newer generation anticonvulsant drugs generally result in fewer and less-severe side-effects, although they may be more expensive to prescribe. For patients with epilepsy, the AAN does not believe that economic considerations alone should determine the prescribing pattern of physicians. The AAN believes that physicians should make every effort to identify when patients may be effectively treated with less expensive alternatives. However, the discretion for this decision should remain with the prescribing physician and should not be determined by coverage limitations.”* For the full position paper [click here.](https://www.aan.com/uploadedFiles/Website_Library_Assets/Documents/6.Public_Policy/1.Stay_Informed/2.Position_Statements/3.PDFs_of_all_Position_Statements/anticonv.pdf) #### Hope for those living with Partial-onset Seizures Previously approved in 2013 by the FDA as adjunctive therapy for partial-onset seizures, APTIOM is the only exclusively once-daily non-extended release AED, which can be used alone or in combination with other AEDs in the treatment of partial-onset seizures. “We believe that APTIOM provides an additional therapeutic option to a larger group of people with partial-onset seizures, since APTIOM can now be used both as a monotherapy, as well as an adjunctive treatment,” said David Frawley, Senior Vice President and Chief Commercial Officer, Sunovion. #### The Research The company achieved FDA approval of a monotherapy indication for APTIOM, based on the results of two identically designed Phase 3 clinical studies [(Studies 093-045 and 093-046)](http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4480532/) conducted by Sunovion. Data from the monotherapy trials, in addition to the data generated from the adjunctive trials, confirm that APTIOM is efficacious and well-tolerated as adjunctive or monotherapy treatment within a daily dose range of 800 to 1,600 milligrams. > “Prescribers now have greater flexibility to optimize clinical response and tolerability when using APTIOM to treat people with partial-onset seizures,” said Antony Loebel, M.D., Executive Vice President and Chief Medical Officer, Sunovion Pharmaceuticals Inc., and Head of Global Clinical Development for Sumitomo Dainippon Pharma Group. Two identically designed Phase 3, dose-blinded, historical-controlled, multi-center, randomized clinical trials (Studies 093-045 and 093-046) evaluated the safety and efficacy of APTIOM (1,600 mg/day or 1,200 mg/day) as monotherapy for partial-onset seizures in patients 16 years of age or older whose seizures were not well-controlled with other antiepileptic drugs (AEDs). The primary endpoint for both trials was the percentage of patients who exited the study due to pre-defined criteria identifying worsening seizure control, compared to historical controls from previous, similarly designed trials of epilepsy patients converting to AED monotherapy. Trial results showed that conversion to APTIOM monotherapy was associated with exit rates superior to historical controls in patients with partial-onset seizures, who were not well-controlled by one or two current AEDs. APTIOM administered once-daily was generally well tolerated in both dose strengths. In the APTIOM monotherapy trials, the most common treatment-related adverse events, headache, dizziness, fatigue, somnolence, and nausea, were mainly mild or moderate in severity. #### About Epilepsy and Partial-Onset Seizures Epilepsy is the fourth most common neurological condition, and one in 26 people in the U.S. will develop epilepsy in their lifetime.[1](http://www.sunovion.com/news/pressReleases/20150828.pdf) Epilepsy manifests as unprovoked seizures, which are caused by abnormal firing of impulses from nerve cells in the brain.[2](http://www.sunovion.com/news/pressReleases/20150828.pdf) Partial-onset seizures, one type of seizure and the most common, are characterized by bursts of electrical activity that are initially focused in specific areas of the brain and may become more widespread, with symptoms varying according to the affected areas.[3](http://www.sunovion.com/news/pressReleases/20150828.pdf) The unpredictable nature of seizures can have a significant impact on those with epilepsy. Reducing the frequency of seizures can greatly lessen the burden of epilepsy.[2](http://www.sunovion.com/news/pressReleases/20150828.pdf) With approximately one-third of people living with epilepsy still unable to control seizures, there continues to be a need for new therapies.[4](http://www.sunovion.com/news/pressReleases/20150828.pdf) Up to 40 percent of people living with epilepsy do not respond to the first or second monotherapy[5](http://www.sunovion.com/news/pressReleases/20150828.pdf), and approximately 36 percent do not have adequate control of seizures despite the use of two or more antiepileptic medications[6](http://www.sunovion.com/news/pressReleases/20150828.pdf). > “Epilepsy is a common medical condition. About a third of the approximately three million people in the U.S. who have epilepsy do not have fully successful treatment with current approaches,” said John Stern, M.D., Director, Epilepsy Clinical Program and Professor, UCLA Department of Neurology. “The approval of APTIOM as a monotherapy for partial-onset seizures is based on clinical studies that provide valuable information regarding the treatment of people with epilepsy.” #### [![Aptiom Logo](http://livingwellwithepilepsy.com/wp-content/uploads/2015/09/Aptiom-Logo-300x156.png "Aptiom Logo – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/09/Aptiom-Logo.png)For more information For more information about Aptiom® (eslicarbazepine acetate) please see the APTIOM Medication Guide and Full Prescribing Information at [www.APTIOM.com](http://www.APTIOM.com). If you are pregnant or plan to become pregnant talk to your doctor before taking Aptiom®. Patients seeking medical information, financial support and other information can access Sunovion Answers at [http://www.aptiom.com/sunovion-answers.html](http://cts.businesswire.com/ct/CT?id=smartlink&url=http%3A%2F%2Fwww.aptiom.com%2Fsunovion-answers.html&esheet=51170922&newsitemid=20150828005441&lan=en-US&anchor=http%3A%2F%2Fwww.aptiom.com%2Fsunovion-answers.html&index=1&md5=13f30f395b351327af83aa53885f372f) or by calling 1.844.4APTIOM [(1.844.427.8466](tel:%281.844.427.8466)) Monday through Friday, from 8:00 a.m. – 8:00 p.m. EST. You are also encouraged to report any negative side effects of prescription drugs to the FDA. Visit [www.fda.gov/medwatch](http://www.fda.gov/medwatch) or call 1-800-FDA-1088. #### About Sunovion Pharmaceuticals Inc. (Sunovion) *Sunovion is a leading pharmaceutical company dedicated to discovering, developing and commercializing therapeutic products that advance the science of medicine in the Psychiatry, Neurology and Respiratory disease areas to improve the lives of patients and their families.* *Sunovion, an indirect, wholly owned subsidiary of Sumitomo Dainippon Pharma Co., Ltd., is headquartered in Marlborough, Mass. More information about Sunovion Pharmaceuticals Inc. is available at [www.sunovion.com](http://www.sunovion.com).* #### About Sumitomo Dainippon Pharma Co., Ltd. *Sumitomo Dainippon Pharma is a top-ten listed pharmaceutical company in Japan. Sumitomo Dainippon Pharma aims to produce innovative pharmaceutical products in the Psychiatry & Neurology area and the Oncology area, which have been designated as the focus therapeutic areas. Sumitomo Dainippon Pharma is based on the merger in 2005 between Dainippon Pharmaceutical Co., Ltd., and Sumitomo Pharmaceuticals Co., Ltd. Today, Sumitomo Dainippon Pharma has about 7,000 employees worldwide. Additional information about Sumitomo Dainippon Pharma is available through its corporate website at [www.ds-pharma.com](http://www.ds-pharma.com)* *APTIOM is used under license from BIAL.* ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Treatments **Tags:** adjunctive therapy, Aptiom, monotherapy, partial-onset seizures, Research Updates, Sunovion --- ### [Charles' Story: Complex Partial and Simple Partial Seizures](https://livingwellwithepilepsy.com/aboutepilepsy/seizure-types-syndromes/focal-seizures/complex-partial-and-simple-partial-story.html) **Published:** August 15, 2013 **Author:** Jessica K. Smith **Content:** ## **Charles’ Story:** 50 years of living with complex partial and simple partial seizures [![temporal-lobe](http://livingwellwithepilepsy.com/wp-content/uploads/2013/09/20869648-brain-anatomy-temporal-lobe.jpg "– Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2013/09/20869648-brain-anatomy-temporal-lobe.jpg)At the age of 50 years old, I currently live with [complex partial](http://www.youtube.com/user/MsKLJames/videos) and [simple partial seizures](http://www.youtube.com/watch?v=chzNbGqkrjg). My family relocated from Florida to Ohio when I was 3 years old. That same year, I had an appendectomy whereby medical personnel left gauze inside my body. This resulted in febrile seizures. My seizures were not diagnosed until I was 15 years old. ## Breaking Through I have earned two college degrees and I have worked most of my life. As I am getting older my seizures are “breaking through” the medicine. My seizure activity always begins when I am in some type of sedentary position. I have experienced most seizures in class, at my desk, in front of the television, at the computer, in a theater, as a passenger, while sleeping or while lying down. All of these situations require that I am sedentary and in a relaxed state of mind. ## The Positives Yet, I am able to drive. It is safer for me to drive in high traffic in Chicago, than a rural street in Ohio. It is also better if I drive a stick shift than a manual. The activity that the brain requires to perform those duties and traffic distraction cuts the threshold of the seizure because my brain does not reach that state of sleep to trigger the seizure. [Submit your story](http://livingwellwithepilepsy.com/sharing-your-story) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Focal Seizures **Tags:** #epilepsy #seizures, simple partial seizures --- ### [Interview with Biohaven Medical Director on RISE A Clinical Trial For Epilepsy](https://livingwellwithepilepsy.com/partner/interview-with-biohaven-medical-director-on-rise-a-clinical-trial-for-epilepsy.html) **Published:** October 31, 2024 **Author:** Jessica K. Smith **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2024/10/Jason-Lerner-dark-background-233x300.jpg "Jason-Lerner-dark-background – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/partner/interview-with-biohaven-medical-director-on-rise-a-clinical-trial-for-epilepsy.html/attachment/jason-lerner-dark-background)Jason Lerner MD## RISE: A Clinical Trial For Epilepsy I recently had the opportunity to speak with Jason Lerner, MD, Medical Director Research and Development at Biohaven, a board-certified pediatric neurologist and epileptologist about his role and about RISE: A Clinical Trial For Epilepsy. [LEARN MORE ABOUT RISE ](https://www.biohavenclinicaltrials.com/clinical-studies/researching-an-investigational-treatment-option-for-focal-onset-epilepsy/?utm_source=lwwe&utm_medium=article&utm_campaign=risebiohaven&utm_id=biohaven&utm_term=epilepsy&utm_content=lerner) ## Background on Dr. Lerner Before joining Biohaven in the spring of 2022, Dr. Lerner was a Clinical Professor at the University of California, Los Angeles. At UCLA Dr. Lerner was also the Associate Child Neurology Division Chief and the Director of the Adolescent Epilepsy Center at UCLA. During his tenure he held many leadership positions including Director of the Pediatric Neurophysiology Lab and Director of the Child Neurology Residency Program and contributed to numerous clinical trials. Dr. Lerner has published more than 35 peer-reviewed articles and book chapters in leading journals such as *Epilepsia*, *Neurology* and the *Journal of Clinical Neurophysiology*. In his current role at Biohaven, Dr. Lerner is a Medical Director and clinical lead of the BHV-7000 development program in epilepsy. Dr. Lerner was trained at New Jersey Medical School in 2000, completed a residency in Pediatrics at the Penn State Health, Milton S. Hershey Medical Center, residency in Child Neurology at the Albert Einstein College of Medicine, Montefiore Medical Center, and fellowship in Pediatric Clinical Neurophysiology at UCLA. **Living Well With Epilepsy:Could you share a little about your role at Biohaven?** **Jason Lerner:** I am a pediatric epileptologist and after 16 years in an academic clinical practice at UCLA I left two and a half years ago to join Biohaven as the Medical Lead for the BHV7000 Epilepsy program. In that position I worked with our team as well as key opinion leaders in epilepsy to develop the protocols for our ongoing studies. Now with the studies ongoing I am working with our Medical Monitoring team to monitor how the study is running and patient safety. ## A Strong Connection to Epilepsy **LWWE: Would you mind sharing your connection to the epilepsy community?** **JL:** It was neuroscience that led me to medical school and after exploring various specialties I found that pediatric neurology was what I wanted to work in. I met my wife, Kelli, who has epilepsy, at the end of medical school. Listening to her stories and struggles living with epilepsy was a significant influence on my decision to specialize in epilepsy. Kelli also led a teen support group when we were in NYC and listening to their stories and struggles showed me the great need in this community. **LWWE:** **As spouse of someone with epilepsy how does that inform your work?** **JL:** As a spouse of someone with epilepsy I can see many different sides of epilepsy, including as a caregiver, not only from the physician standpoint. I think that has really helped me see things like comorbidities and ASM adverse effects and what is important to the epilepsy community as a whole. ## A Focus on Quality of Life **LWWE: How does your background as a pediatric neurologist inform your work?** JL: My patients that really showed me the importance of quality of life and how epilepsy as well as the treatments can cause problems and have a great impact on quality of life. ## RISE A Focal Refractory Epilepsy Study **LWWE: Tell us about the RISE Clinical Trial and what makes it unique** **JL:** BHV7000 is a new potassium channel activator that we are testing in focal epilepsy, generalized epilepsy, depression, and bipolar disorder. The potassium channel helps regulate the excitability of a cell and activating it may inhibit seizures from starting and evolving. Currently there are no potassium channel activators available in the market so this would be a unique mechanism. The RISE trial is the name of the focal trials. [LEARN MORE ABOUT RISE ](https://www.biohavenclinicaltrials.com/clinical-studies/researching-an-investigational-treatment-option-for-focal-onset-epilepsy/?utm_source=lwwe&utm_medium=article&utm_campaign=risebiohaven&utm_id=biohaven&utm_term=epilepsy&utm_content=lerner) ## An Epilepsy Clinical Trial **LWWE: Who is eligible for RISE?** **JL:** People between 18 and 75 years old who have a diagnosis of focal seizures and are continuing to have seizures despite treatment may be eligible for the study. **LWWE: Why should someone participate in RISE?** **JL:** Anyone who has focal (complex partial) seizures and continues to have seizures despite treatment should at least consider a clinical trial. While we are actively studying BHV7000, it is not available for doctors to prescribe. Joining a trial is a way to try a medication earlier than waiting for it to be approved. [LEARN MORE ABOUT RISE ](https://www.biohavenclinicaltrials.com/clinical-studies/researching-an-investigational-treatment-option-for-focal-onset-epilepsy/?utm_source=lwwe&utm_medium=article&utm_campaign=risebiohaven&utm_id=biohaven&utm_term=epilepsy&utm_content=lerner) **LWWE: What is the best way to learn more about RISE?** **JL:** The website below provides a lot of information about the study and there is a link to a questionnaire to see if you could be a candidate. The patient will be contacted by a representative who can provide more information and help find the closest participating site. We encourage everyone to speak with their personal physicians to see if they may be a good candidate for the study. If their physician is not part of the study, he/she may also be able to refer the patient to a center participating in the study. [LEARN MORE ABOUT RISE ](https://www.biohavenclinicaltrials.com/clinical-studies/researching-an-investigational-treatment-option-for-focal-onset-epilepsy/?utm_source=lwwe&utm_medium=article&utm_campaign=risebiohaven&utm_id=biohaven&utm_term=epilepsy&utm_content=lerner) ## What to Expect in a Clinical Trial **LWWE: What can people expect if they participate in RISE?** **JL:** The study consists of a period during which the seizures will be observed followed by a time that you would be taking a dose of BHV7000 or a placebo. This is the double-blind phase during which the patient, physician and company running the study do now know which dose or placebo the patient is being given. After this phase people completing the study will have the opportunity to go into a long-term study during which they will be given a dose of the medication which will be known by the patient and the physician. **LWWE: Biohaven seems to do things differently. Would you mind sharing your perspective on that?** **JL:** Here at Biohaven we know that days matter to patients when they are suffering from a disease or disorder and our goal is to find the best treatments possible, study them and run trials to show how well they work and how safe they are as safely and quickly as possible Dr. Lerner thank you so much for taking the time to speak with Living Well With Epilepsy in this way. For more information on the RISE Clinical Trial click the button below: [LEARN MORE ABOUT RISE ](https://www.biohavenclinicaltrials.com/clinical-studies/researching-an-investigational-treatment-option-for-focal-onset-epilepsy/?utm_source=lwwe&utm_medium=article&utm_campaign=risebiohaven&utm_id=biohaven&utm_term=epilepsy&utm_content=lerner) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Partner --- ### [Epilepsy Patient Advocacy and the RISE Clinical Trial](https://livingwellwithepilepsy.com/partner/epilepsy-patient-advocacy-and-the-rise-clinical-trial.html) **Published:** December 3, 2024 **Author:** Jessica K. Smith **Content:** ## [![Anne Neumann](https://livingwellwithepilepsy.com/wp-content/uploads/2024/11/Anne_Neumann-scaled-1-467x600.jpg "Anne Neumann – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/partner/epilepsy-patient-advocacy-and-the-rise-clinical-trial.html/attachment/anne_neumann-scaled)RISE: A Clinical Trial For Epilepsy I recently had the opportunity to speak with Anne Neumann, RN, BSN, Rare Disease Marketing, Patient Advocacy and Engagement Lead at [Biohaven](https://livingwellwithepilepsy.com/partners/biohaven "Biohaven"), about her role and about [RISE: A Clinical Trial For Epilepsy](https://www.biohavenclinicaltrials.com/clinical-studies/researching-an-investigational-treatment-option-for-focal-onset-epilepsy/?utm_source=lwwe&utm_medium=article&utm_campaign=risebiohaven&utm_id=biohaven&utm_term=epilepsy&utm_content=lerner). [LEARN MORE ABOUT RISE ](https://www.biohavenclinicaltrials.com/clinical-studies/researching-an-investigational-treatment-option-for-focal-onset-epilepsy/?utm_source=lwwe&utm_medium=article&utm_campaign=risebiohaven&utm_id=biohaven&utm_term=epilepsy&utm_content=lerner) ## Background on Ms. Neumann Anne brings over 25 years’ experience in healthcare, from nonprofit to clinical practice to various roles with the pharmaceutical industry. Anne received her Bachelor of Science in Nursing from Chamberlain University. She did her clinical practice at Western Connecticut Health where she practiced in several different specialties, including medical/surgical, oncology and neurology. Since then, Anne has worked as a nurse case manager for Alexion Pharmaceuticals, field nurse educator for Novartis Oncology, and oncology sales representative for Novartis, supporting several disease states. Anne became a product trainer for oncology at Novartis before joining Biohaven. Anne also continues to support her love of public health as chairmen of the board for the Housatonic Valley Health Department which she has supported for nine years, in several volunteer capacities, including growing the department during the Covid pandemic. **Living Well With Epilepsy:Could you share a little about your role at Biohaven?** **Anne Neumann:** I am the Global Patient Advocacy and Marketing Lead. I interact with patient groups across all of platforms. Prior to joining Biohaven I was a nurse product trainer at Novartis. I have a love of public health and patient advocacy. ## A Strong Connection to Epilepsy **LWWE: Would you mind sharing your connection to the epilepsy community?** **AN:** Sure, my 17 yr. old daughter was diagnosed with epilepsy at age 14, after having a tonic conic seizure before her first day of high school. In retrospect she had been having classic JME jerks for over a year. ## A Focus on Epilepsy Quality of Life **LWWE:** **As a parent of a child with epilepsy how does that inform your work?** **AN:** One of the most important parts of my job is connecting with patients and caregivers. I am a nurse by trade and that has always been easier for me. However, watching my daughter struggle through side effects and MULTIPLE medications, my drive for this program is more personal and very relatable to patients and caregivers. **LWWE: How does your background in nursing inform your work?** **AN**: Advocacy work is an extension of my nursing years. It is one of the main focuses of nursing. Trust is huge part of my job and nursing background has allowed me to build on that here at Biohaven. ## RISE A Focal Refractory Epilepsy Study **LWWE: Tell us about the RISE Clinical Trial and what makes it unique** **AN:** BHV7000 is a new potassium channel activator that Biohaven is testing in focal epilepsy, generalized epilepsy, depression, and bipolar disorder. The potassium channel helps regulate the excitability of a cell and activating it may inhibit seizures from starting and evolving. Currently there are no potassium channel activators available in the market so this would be a unique mechanism. The RISE trial is the name of the focal trials. [LEARN MORE ABOUT RISE ](https://www.biohavenclinicaltrials.com/clinical-studies/researching-an-investigational-treatment-option-for-focal-onset-epilepsy/?utm_source=lwwe&utm_medium=article&utm_campaign=risebiohaven&utm_id=biohaven&utm_term=epilepsy&utm_content=lerner) ## An Epilepsy Clinical Trial **LWWE: Who is eligible for RISE?** **AN:** People between 18 and 75 years old who have a diagnosis of focal seizures and are continuing to have seizures despite treatment may be eligible for the study. **LWWE: Why should someone participate in RISE?** **AN:** Anyone who has focal (complex partial) seizures and continues to have seizures despite treatment should at least consider a clinical trial. Clinical trials are the best way to get the latest generation of medications. The hope is that newer medication have less side effect and can reduce seizures. While [Biohaven](https://livingwellwithepilepsy.com/partners/biohaven "Biohaven") is actively studying BHV7000, it is not available for doctors to prescribe. Joining a trial is a way to try a medication earlier than waiting for it to be approved. [LEARN MORE ABOUT RISE ](https://www.biohavenclinicaltrials.com/clinical-studies/researching-an-investigational-treatment-option-for-focal-onset-epilepsy/?utm_source=lwwe&utm_medium=article&utm_campaign=risebiohaven&utm_id=biohaven&utm_term=epilepsy&utm_content=lerner) **LWWE: What is the best way to learn more about RISE?** **AN:** The website below provides a lot of information about the study and there is a link to a questionnaire to see if you could be a candidate. You will be contacted by a representative who can provide more information and help find the closest participating site. We encourage everyone to speak with their personal physicians to see if they may be a good candidate for the study. If their physician is not part of the study, he/she may also be able to refer the patient to a center participating in the study. [LEARN MORE ABOUT RISE ](https://www.biohavenclinicaltrials.com/clinical-studies/researching-an-investigational-treatment-option-for-focal-onset-epilepsy/?utm_source=lwwe&utm_medium=article&utm_campaign=risebiohaven&utm_id=biohaven&utm_term=epilepsy&utm_content=lerner) ## What to Expect in a Clinical Trial **LWWE: What can people expect if they participate in RISE?** **AN:** The study consists of a period during which the seizures will be observed followed by a time that you would be taking a dose of BHV7000 or a placebo. This is the double-blind phase during which the patient, physician and company running the study do now know which dose or placebo the patient is being given. After this phase people completing the study will have the opportunity to go into a long-term study during which they will be given a dose of the medication which will be known by the patient and the physician. **LWWE: Biohaven seems to do things differently. Would you mind sharing your perspective on that?** **AN:** For me, Biohaven does and acts the way they say they will. Meaning we are a family here and everyone who participates in our trials become family to us. We develop trials based on the needs of the community. Inclusion of patient groups early and working hard on recruitment is a main focus of our here. We work hard to bring the latest treatment quickly and safely into the clinics. Ms. Neumann thank you so much for taking the time to speak with Living Well With Epilepsy in this way. For more information on the RISE Clinical Trial click the button below: [LEARN MORE ABOUT RISE ](https://www.biohavenclinicaltrials.com/clinical-studies/researching-an-investigational-treatment-option-for-focal-onset-epilepsy/?utm_source=lwwe&utm_medium=article&utm_campaign=risebiohaven&utm_id=biohaven&utm_term=epilepsy&utm_content=lerner) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Partner --- ### [Epilepsy Blog Relay: Focal Seizures with Todd’s Paralysis](https://livingwellwithepilepsy.com/aboutepilepsy/seizure-types-syndromes/focal-seizures/focal-seizures-with-todds-paralysis.html) **Published:** March 4, 2020 **Author:** Guest Contributor **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/11/dcca7ea3-e89b-45b5-bf9a-0a0c2f86583b-225x300.jpeg "dcca7ea3-e89b-45b5-bf9a-0a0c2f86583b – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/seizures-treatments/seizure-types/focal-seizures/focal-seizures-with-todds-paralysis.html/attachment/dcca7ea3-e89b-45b5-bf9a-0a0c2f86583b)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***.*** #### Stephanie’s Story I was first diagnosed with epilepsy almost one year ago at age 49. I quite literally thought I was having a stroke so I went to the Emergency Room. After the ER visit I was referred to a neurologist for follow up. In the meantime, I researched my symptoms and suspected I had epilepsy. #### Todd’s Paralysis I also discovered I have a rare condition called Todd’s Paralysis or [Todd’s Paresis](https://www.ncbi.nlm.nih.gov/books/NBK532238/), which causes weakness on the side I have my seizures. Now, after a few months, medication controls my seizures but not the weakness I experience throughout the day. It is incredibly debilitating and is a huge struggle in my daily life. Even if I’m just cooking or actively moving around my house doing chores I will experience weakness. At times the weakness is so bad that I’m forced to sit down and rest until it subsides, which is usually one hour. Then I’ll go through it all over again shortly thereafter. Others notice, especially when I am out in public and l appear drunk, stumbling, and uncoordinated. But the really hard part is the exhaustion that comes with the weakness and seizures. #### What is Todd’s Paralysis? Todd’s paralysis, also referred to as Todd’s paresis, Todd’s palsy, or postictal paresis. According to the National Institute of Neurological Disorders and Stroke, Todd’s paralysis is a neurological condition experienced by individuals with epilepsy, in which a seizure is followed by a brief period of temporary paralysis. The paralysis may be partial or complete but usually occurs on just one side of the body. The paralysis can last from half an hour to 36 hours, with an average of 15 hours, at which point it resolves completely. Todd’s paralysis may also affect speech and vision. Scientists don’t know what causes Todd’s paralysis. Current theories propose biological processes in the brain that involve a slow down in either the energy output of neurons or in the motor centers of the brain. It is important to distinguish Todd’s paralysis from a stroke, which it can resemble, because a stroke requires completely different treatment. [LEARN MORE ](https://www.ninds.nih.gov/Disorders/All-Disorders/Todds-Paralysis-Information-Page) --- **»Related: [Epilepsy Blog Relay: Michael takes a positive approach to an epilepsy diagnosis](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/a-positive-approach-to-an-epilepsy-diagnosis.html)** --- #### Positivity and managing triggers I try to remain positive and tough through my daily struggles but honestly, the fatigue gets in the way of my ability to do most physically normal activities that I am used to. I am also 15 years widowed and raising a young son by myself. Usually the strong one among my family and friends, I now am the one who needs to maintain a less stressful life — as stress, sleep, and dehydration are all major triggers of mine. Thank you for letting me share my story. --- **NEXT UP:** Be sure to check out the next post tomorrow at . ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Focal Seizures **Tags:** todd's paralysis --- ### [SUDEP Awareness and Medication Adherence – Is There a Connection?](https://livingwellwithepilepsy.com/aboutepilepsy/sudep/sudep-awareness-and-medication-adherence.html) **Published:** October 2, 2019 **Author:** Jessica K. Smith **Excerpt:** DYK? SUDEP is the most common disease-related cause of death in people with epilepsy. By having early conversations and educating patients and families on #SUDEP, we can work with them on the modifiable risk factors (AEDs adherence and adverse events). Read more on the connection between patient education and seizure freedom. **Content:** #### **[![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/10/Screen-Shot-2019-10-01-at-9.09.03-PM-300x297.png "Screen Shot 2019-10-01 at 9.09.03 PM – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2019/sudep/sudep-awareness-and-medication-adherence.html/attachment/screen-shot-2019-10-01-at-9-09-03-pm)Talking to patients about the realities of SUDEP and providing them with** [**online resources**](https://www.epilapsey.com/patient#what-you-risk) **can help. SUDEP (sudden unexpected death in epilepsy) is the most common disease-related cause of death in people with epilepsy.1 Among neurologic disorders in the United States, SUDEP is the leading cause of lost years of life after stroke.2 Yet, for many people with epilepsy and their loved ones, the impact of SUDEP remains a mystery due to the fact that some health care practitioners are hesitant to discuss SUDEP.1,3 In fact, it’s not uncommon for families to learn what SUDEP is only after a loved one has died from it.4,6,7 Although there is no definitive way to prevent SUDEP, there are steps patients and caregivers can take to mitigate the risk1,8 – which is why talking about SUDEP and its connection to medication adherence (taking medication regularly at the correct dose) is so important. Medication adherence is a crucial part of effective seizure control and the journey toward seizure freedom.5 Studies have found that medication adherence and improving seizure control are also key to lowering SUDEP risk.1,8 That’s because every convulsive seizure increases the likelihood of SUDEP9 – more than three convulsive seizures in one-year increases risk of SUDEP by a factor of 15.8 And according to a survey, missed medication doses are the number one cause of uncontrolled seizures.10,12,17 All of this begs the question: could educating patients about SUDEP help lower the risk by increasing medication adherence and lowering the chance of experiencing uncontrolled seizures? To take it a step further, does merely knowing about SUDEP motivate patients to follow their treatment regimen as prescribed? Research shows there is a link. One recent study suggests that providing information on SUDEP to patients and their caregivers may increase drug adherence without adverse effects on their quality of life or mood.11 Another study found that for patients with a high risk of SUDEP who have modifiable risk factors, repeat discussion of SUDEP during physician visits may encourage patients to make changes to the way they manage their disease.6 In a 2018 survey of adult patients with epilepsy and their caregivers, 89% said SUDEP awareness motivated them to improve medication adherence.14 “Ideally, seizure control means seizure freedom, and while we cannot always predict when there will be another spell, we need to encourage patients and families to avoid preventable causes like missed doses which can lead to SUDEP,” says Lawrence W. Brown, MD, Associate Professor of Neurology and Pediatrics at the Children’s Hospital of Philadelphia. “When we talk about pediatric epilepsy, SUDEP is a rare but definite possibility, and it needs to be a routine part of a broader conversation around seizure control and lifestyle factors that could affect medication adherence.” #### Communicating about SUDEP According to guidelines from the American Academy of Neurology (AAN) and the American Epilepsy Society, epilepsy patients should be told about their SUDEP risk. The guidelines go on to say clinicians should also inform epilepsy patients that seizure control, particularly with respect to tonic-clonic seizures, is “strongly associated with decreased SUDEP risk.”9 According to the research, people want to learn more about SUDEP. One survey of parents who lost a child to SUDEP showed that they support having the SUDEP conversation with their health providers immediately upon diagnosis.15 Even patients and families who report fear from SUDEP nonetheless say they want to be informed.14 Despite this, the largest audit of neurologists to date (1,200 in the US and Canada) found that just 6.8% say they’ve discussed SUDEP with patients at least 90% of the time and 11.6% say they’ve never discussed it.3 For some providers, it is a matter of not wanting to worry or stress their patients.4 Yet, according to Dr. Lawrence W. Brown, talking to patients about SUDEP can have the opposite effect. “Research tells us that being open about SUDEP can empower patients and families to make better decisions about the management of their medical condition,”6 says Dr. Brown. “As clinicians, we need to work with our patients to create a more open dialog, which could improve treatment adherence and potentially help save more lives.” Talking about SUDEP can also open the door to a wider discussion about strategies to help prevent SUDEP, in addition to taking medication as prescribed. “We know most cases of SUDEP happen during sleep and are unwitnessed,16 so, for example, we might recommend monitoring devices or a seizure alert dog to call attention to the presence of a seizure. For the college student with epilepsy, we might recommend a roommate trained to provide basic aid during a seizure,” says Dr. Brown. For truly patient-centered care, Dr. Brown says it is essential that patients receive accurate information about all the risks and realities associated with epilepsy and uncontrolled seizures, including their individual risk of SUDEP, as a part of an overall care plan. “Epilepsy management is like putting together a puzzle – all of these ‘pieces’ – from treatment adherence to promotion of self-management skills, avoidance of preventable risk factors that reduce the risk of seizures and SUDEP – are linked,” says Dr. Brown. “Eliminating one topic from the conversation can throw everything else out of balance. Without all of the puzzle pieces, the picture for the patient is not complete.” #### References 1. Miller RW, et al. Discussing Sudden Unexpected Death in Epilepsy (SUDEP) with Patients: Practices of Health-Care Providers. *Epilepsy Behav.* 2014;32:38-41. 2. Thurman DJ, Hesdorffer DC, French JA. Sudden unexpected death in epilepsy: Assessing the public health burden. *Epilepsia*. 2014;55(10):1479–1485. 3. Friedman FD, et al. Sudden unexpected death in epilepsy: Knowledge and experience among U.S. and Canadian neurologists. *Epilepsy Behav.* 2014;35:13-18. 4. Stevenson MJ, Stanton TF. Knowing the risk of SUDEP: Two family’s perspectives and The Danny Did Foundation. *Epilepsia*. 2014;55(10):1495-1500. 5. Eatok J, Baker G. Managing patient adherence and quality of life in epilepsy. *Neuropsych Dis and Treat.* 2007;3(1):117-131. 6. Donner EJ, et al. After sudden unexpected death in epilepsy: Lessons learned and the road forward. *Epilepsia.* 2016;57(S1):46-53. 7. Austin JK, et al. Testimonies submitted for the Institute of Medicine report Epilepsy across the spectrum: Promoting Health and Understanding*. Epilepsy Behav. 2012;25(4)*:634-661. 8. Hesdorffer DC, Tomson T, Benn E, et al. Do antiepileptic drugs or generalized tonic-clonic seizure frequency increase SUDEP risk? A combined analysis. *Epilepsia*. 2012;53(2):249-252. 9. Harden C, et al. Practice guideline summary: Sudden unexpected death in epilepsy incidence rates and risk factors. *Neurol.* 2017;88(17):1674-1680. 10. Hovinga CA, et al. Association of non-adherence to antiepileptic drugs and seizures, quality of life, and productivity: survey of patients with epilepsy and physicians. *Epilepsy Behav*. 2008;13:316–322. 11. [Radhakrishnan](https://onlinelibrary.wiley.com/action/doSearch?ContribAuthorStored=Radhakrishnan%2C+Divya+M) DM, et al. Effect of providing sudden unexpected death in epilepsy (SUDEP) information to persons with epilepsy (PWE) and their caregivers—Experience from a tertiary care hospital. *Neurolog*. 2018;138(5):417-424. 12. Cramer JA, Glassman M, Rienzi V. The relationship between poor medication compliance and seizures. *Epilepsy Behav.* 2002;3(4):338-342. 13. Donner EJ, Buchalter J. Commentary: It’s time to talk about SUDEP*.* *Epilepsia.* 2014;55(10):1501-1503. 14. Long L., Cotterman-Hart S, Shelby J. To reveal or conceal? Adult patient perspectives on SUDEP disclosure. *Epilepsy Behav.* 2018;86:79-84. 15. American Epilepsy Society. Partners against mortality in epilepsy conference summary. *Epilepsy Currents.* 2013;13(2):5-21. 16. Devinsky O, Hesdorffer DC, Thurman DJ, Lhatoo S, Richerson G. Sudden unexpected death in epilepsy: epidemiology, mechanisms, and prevention. *Lancet Neurol*. 2016; 15:1075–1088. 17. Epilepsy Foundation. Missed Medicines. [Available Online](https://www.epilepsy.com/learn/triggers-seizures/missed-medicines). Accessed Sep. 18, 2019. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** SUDEP **Tags:** Medication Adherance, medication compliance, SUDEP --- ### [The Bhutan Epilepsy Project](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/bhutan-epilepsy-project.html) **Published:** October 20, 2014 **Author:** Jessica K. Smith **Excerpt:** Farrah Mateen, MD, PhD, of Mass General Hospital and Harvard Medical School is taking mobile EEG tech to the Himalayas with the Bhutan Epilepsy Project. **Content:** [![Mateen and Nirola](http://livingwellwithepilepsy.com/wp-content/uploads/2014/10/IMG_0686-300x225.jpg "IMG_0686 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/10/IMG_0686.jpg)Dr Farrah Mateen left and Dr Damber Nirola rightI recently spoke with [Farrah Mateen, MD, PhD](http://www.massgeneral.org/neurology/doctors/doctor.aspx?id=19421), of Massachusetts General Hospital and Harvard Medical School about the Bhutan Epilepsy Project. Dr. Mateen and her team are working on a unique project investigating the use of mobile EEG to diagnose seizure disorders in remote and under-resourced areas. ### Bhutan Epilepsy Project JESSICA KEENAN SMITH: Dr. Mateen, thank you for taking time out of your busy schedule to speak with Living Well With Epilepsy about the Bhutan Epilepsy Project. Would you start by describing this initiative? DR. FARRAH MATEEN: [The Bhutan Epilepsy Project](http://www.bhutanbrain.com/) is a research endeavor to help improve the diagnosis of seizure disorders in Bhutan. It is aimed to improve the lives of people with seizures and suspected seizures in the Kingdom of Bhutan, a landlocked Himalayan country with a potentially high epilepsy burden. The project involves patients, neurologists, psychiatrists, traditional medicine practitioners, computer software engineers, EEG technicians, social scientists, and business planners and research coordinators. [![bhutan map](http://livingwellwithepilepsy.com/wp-content/uploads/2014/10/bhutan-map-e1412643988710-1024x388.jpg "bhutan map – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/10/bhutan-map-e1412643988710.jpg) SMITH: I have to be honest, I don’t know much about Bhutan. Can you describe the need for epilepsy diagnostics in the Kingdom of Bhutan? MATEEN: The number of people living with epilepsy in Bhutan has not been formally studied epidemiologically, but up to 1 percent of the population may have epilepsy. That equates to approximately 10,000 people in the country. Epilepsy is often first diagnosed in children and we are aiming to enroll neonates (newborns) and children especially. There is no neurologist in Bhutan. The care of people with epilepsy is handled by psychiatrists, including our project collaborator Dr. Damber Nirola. ### EEG Technology Goes Mobile [![DSC_0302](http://livingwellwithepilepsy.com/wp-content/uploads/2014/10/DSC_0302-300x200.jpg "DSC_0302 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/10/DSC_0302.jpg)SMITH: How are you and your team implementing this study? MATEEN: It is a clinical cohort study in which all participants are offered an opportunity to have a stationary EEG, smartphone EEG, brain MRI, and neurocysticercosis testing. It is an international collaborative project which uses software developed by the Danish Technical University’s lab (Principal Investigator Lab: [Lars Kai Hansen](http://www.dtu.dk/english/Service/Phonebook/Person?id=792&tab=2&qt=dtupublicationquery), Dept of Applied Mathematics and Computer Science) for an EEG smartphone device. The project takes place primarily in the [Jigme Dorji Wangchuk National Referral Hospital](http://www.jdwnrh.gov.bt/) in Thimphu. SMITH: Why is Bhutan the ideal site for this project? MATEEN: They have a high uptake of new technologies including cell phones. Their uptake of mobile phones has been rapid and widespread, approximately the prevalence of cell phone usage in countries such as Canada! They also have a presumed high burden of epilepsy, likely due to the prevalence of preterm birth, genetics, and neurocysticercosis. Moreover, the geographic barriers to reaching the main referral center make the use of community-health level portable technologies ideal for the population. ### Making a Difference SMITH: How many patients are expected to benefit from this project? MATEEN: We are exceeding our planned enrollment. So far, more than 100 people are recruited including more than 50% of people under age 18 years old. We hope to enroll 125 additional participants throughout November and potentially more people in early 2015. SMITH: What is your involvement? How did you come to participate? MATEEN: I am the principal investigator and developed the grant proposals. Through conversations with my collaborators, Dr. Damber Nirola, and before him, Dr. Chencho Dorji, both Bhutanese psychiatrists, I developed the project. I have been to Bhutan four times to operationalize the project so far. SMITH: I’m curious how you have been able to roll out this study. Does the project have financial support? MATEEN: We are thankful for the support of [Grand Challenges Canada](http://www.grandchallenges.ca/), funded by the Government of Canada, and the [Thrasher Research Foundation](https://www.thrasherresearch.org/default.aspx) (Early Career Award). Academically, the University of Ottawa, JDW National Referral Hospital, Danish Technical University, and [Massachusetts General Hospital](http://www.massgeneral.org/research/researchlab.aspx?id=1595) are all collaborators. ### Removing Barriers to Care [![DSC_0216](http://livingwellwithepilepsy.com/wp-content/uploads/2014/10/DSC_0216-300x200.jpg "DSC_0216 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/10/DSC_0216.jpg)SMITH: What would success from this project look like to you? MATEEN: We hope the smartphone EEG will help diagnose seizures in this population and show value in a resource-limited setting. More importantly, we are pleased that people in Bhutan will access diagnostic care for seizures that may help direct their care. I hope the project brings attention to the lives of people with epilepsy in resource-limited settings, explores and addresses their feelings of stigma, removes barriers to care, and optimizes their quality of life. Most importantly, I have gained lifelong friendships with wonderful collaborators in Bhutan, Denmark, and beyond. I am very thankful to my research coordinators in Bhutan, Ms. Sonam Deki and Mr. Lhab Tshering. They are very inspiring in their dedication to the project, as are our participants who often come from many hours away to participate. In this sense, the project has already succeeded in my books. SMITH: Dr. Mateen, thank you again for taking the time, especially since you are about to head off to Bhutan for another extended visit. I look forward to hearing more as this project continues. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** International Epilepsy **Tags:** Bhutan Epilepsy Project, Global Epilepsy, Global Epilepsy Care, Global Health --- ### [Epilepsy Blog Relay™: Epilepsy advancements in developing countries](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/epilepsy-blog-relay-epilepsy-advancements-in-developing-countries.html) **Published:** March 16, 2017 **Author:** Maureen Knorr **Excerpt:** Maureen's Story: I wanted to highlight a few epilepsy advancements I witnessed on my travels in Mahenge, Tanzania. **Content:** ***[![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/03/EEG_LWWE-1024x682.jpg "EEG_LWWE – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/epilepsy-blog-relay-epilepsy-advancements-in-developing-countries.html/attachment/eeg_lwwe) This post is part of the [Epilepsy Blog Relay™](http://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-march-2017-participants) which will run from March 1 to March 31, 2017. Follow along!*** For tech week, I wanted to highlight three epilepsy advancements in developing countries. The first one is enabled through technology, and the second and third are non-technological. Through [my travels](http://livingwellwithepilepsy.com/category/traveling-with-epilepsy) in Mahenge, Tanzania, I’ve personally witnessed all these advancements and it is my understanding these are now common in many developing countries. #### Advancements in Mobile EEG Imagine you are living with epilepsy in a rural area where there is little to no electricity and only the most basic healthcare. Imagine your doctor has little knowledge of epilepsy. These questions are pushing researchers to develop new technology that can help doctors diagnose and properly treat epilepsy in developing areas. [Mobile EEG systems](http://livingwellwithepilepsy.com/2014/global-epilepsy/bhutan-epilepsy-project.html) have been one of the most important advancements in rural healthcare for epilepsy patients. These EEGs aren’t the oversized machines recording data from hundreds of electrodes that I am accustomed to; instead there is a small number of electrodes that can easily attach to any computer loaded with the recording software. It could easily fit in a backpack for a doctor on the go. These mobile EEGs can also record and store data allowing professionals to decode at another location. Mobile technology has helped doctors around the world diagnose and treat patients with epilepsy and there is even early software to allow this decoding to happen with your iPhone. ***[![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/03/Water-tanks-LWWE-1024x682.jpg "Water tanks LWWE – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/epilepsy-blog-relay-epilepsy-advancements-in-developing-countries.html/attachment/water-tanks-lwwe)*** #### Advancements in Water Tanks Every year there are thousands of epilepsy deaths related to drowning. Like many other epilepsy patients, I am lucky to be able to take the necessary precautions to prevent such a tragedy, such as showering instead of bathing, swimming under supervision, and (this one may seem overtly obvious) having my drinking water out of a faucet. In many rural areas epilepsy patients aren’t able to take these precautions. Thankfully there are organizations helping epilepsy patients gather water in a safer way. Provision Charitable Foundations sponsored a project that made large watering tanks for those with epilepsy so they no longer needed to collect water from the river. These tanks not only provide bathing and cooking water, they also are connected to a sophisticated irrigation system. In the past, farmers would collect water from the river many times a day, and now they don’t need to take that risk. #### Advancements in Mobile Ambulances Technology and innovations can’t prevent all injuries caused by seizures but new tuk-tuk and motorcycle ambulances are helping patients get the urgent care they need fast. The tuk-tuk is an ambulance tricycle that is equipped with basic first-aid supplies. The tuk-tuk’s small size makes it easy to quickly navigate though traffic congestions. The motorcycle ambulance is equipped with basic first aid supplies and can reach the most rural areas to assist in emergency situations. Motorcycle ambulances have an attachable stretcher that pulls behind the bike on the ground. This won’t be the most comfortable ride to the hospital but it will certainly be the quickest! In rural areas where food is cooked over an open flame fire, epilepsy patients commonly suffer from severe burns and sometimes even death. Having quick access to emergency care is a must for epilepsy patients with life threatening burns. #### Advancements in Diagnosis and Treatment As the awareness of epilepsy continues to grow, so do advancements in the diagnosis and treatment. I’m very encouraged to learn that many of these innovations are seen across other developing countries and will continue to share as more arise! --- ***[![](http://livingwellwithepilepsy.com/wp-content/uploads/2016/05/img_6708-150x150.jpg "megan – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/portfolio/jun-15/attachment/img_6708)NEXT UP: Be sure to check out the next post tomorrow by [Megan Davis](https://inmegansshoes.com/) for more on epilepsy awareness. For the full schedule of bloggers visit*** [***livingwellwithepilepsy.com***](http://livingwellwithepilepsy.com/epilepsy-blog-relay)***.*** ***TWITTER CHAT: And don’t miss your chance to connect with bloggers on the [\#LivingWellChat ](http://twubs.com/livingwellchat)on March 31 at 7PM ET.*** ![author avatar](https://secure.gravatar.com/avatar/21dd1cb76084b50fb7cccc4f2b6135cd43d1c082e5b039d6d4a99606803dc749?s=300&d=mm&r=g) Maureen Knorr I’m Maureen, and I have epilepsy. You’re probably reading this because either you have epilepsy, or you love someone that has epilepsy. Whatever sparked your curiosity, I am happy to be sharing my experiences with you. From having seizures in foreign countries to begging pharmacists that don’t speak English for medication, I can definitely say that it's been an interesting journey. Hopefully reading about my ups and downs, and my everyday and not so everyday adventures will inspire you too! Welcome to my life of living well with epilepsy! [See Full Bio](https://livingwellwithepilepsy.com/author/maureen-knorr) [ ](https://livingwellwithepilepsy.com/author/maureen-knorr) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://maureenknorr) **Categories:** International Epilepsy **Tags:** Epilepsy Blog Relay, Global Epilepsy Care --- ### [Epilepsy Blog Relay™: Dr. Mateen Takes Mobile Technology Global for Epilepsy](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/epilepsy-blog-relay-global-health-goes-mobile-thanks-to-new-research.html) **Published:** March 20, 2017 **Author:** Jessica K. Smith **Excerpt:** Dr. Mateen's Story: If you are interested in innovation in Global Health, you may need to hear about the Bhutan Epilepsy Project. **Content:** [![](http://livingwellwithepilepsy.com/wp-content/uploads/2014/10/IMG_0686-300x225.jpg "IMG_0686 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2014/global-epilepsy/bhutan-epilepsy-project.html/attachment/img_0686)***This post is part of the This post is part of the [Epilepsy Blog Relay™](http://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-march-2017-participants) which will run from March 1 to March 31, 2017. Follow along!*** #### Dr. Mateen’s Story If you are interested in innovation in Global Health, or in how low-cost technology can positively impact developing nations, you may have already heard about the [Bhutan Epilepsy Project](http://www.bhutanbrain.com/). If not, we are thrilled to introduce you to the project lead, [Farrah Mateen, MD, PhD](http://www.massgeneral.org/neurology/doctors/doctor.aspx?id=19421), of Massachusetts General Hospital and Harvard Medical School. In 2013, The Bhutan Epilepsy Project received funding from Grand Challenges Canada, which allowed a team to head off to the Kingdom of Bhutan. The research team at Harvard Medical School along with colleagues in Denmark had developed a tool to facilitate diagnosis of epilepsy in rural settings and to ease the burden on patients. They hoped to provide an alternate to the expensive electroencephalogram (EEG). Now four years later, this diagnostic tool has already benefited patients in Bhutan and has the potential to reach patients in other rural and under-resourced areas around the world. As you can see in the photo below, the technology is much more practical, using mobile phones for interpretation, and headsets in exchange for complicated wires and glue. [![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/03/IMG_2580-768x1024.jpg "IMG_2580 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/mar-17-ebr-posts/epilepsy-blog-relay-global-health-goes-mobile-thanks-to-new-research.html/attachment/img_2580) #### Bhutan Epilepsy Project The project was created to study a mobile, user-friendly electroencephalogram (EEG) device for the accurate diagnosis of seizures in a resource-limited setting. The research team hoped to investigate the diagnostic accuracy of a new smartphone EEG. If successful, this technology could be utilized in rural and under-resourced areas around the world. [![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/03/bhutan-map-e1412643988710-1024x388.jpeg "bhutan-map-e1412643988710 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/mar-17-ebr-posts/epilepsy-blog-relay-global-health-goes-mobile-thanks-to-new-research.html/attachment/bhutan-map-e1412643988710) #### Why Bhutan? According to Mateen, “Bhutan was chosen for several reasons. First, there are no neurologists practicing in the country. Epilepsy care is handled by psychiatrists, including the Bhutan Epilepsy Project collaborator Dr. Damber Nirola. Second, the region is rural area which can make transportation difficult for people with epilepsy. Third, there is reason to believe the burden of epilepsy is high due to neurocysticercosis, a parasitic cause of epilepsy, among other causes.” #### [![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/03/IMG_3783-1024x768.jpg "IMG_3783 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/mar-17-ebr-posts/epilepsy-blog-relay-global-health-goes-mobile-thanks-to-new-research.html/attachment/img_3783) #### Making a Difference Since its inception in 2013, this project has received the support of [Grand Challenges Canada](http://www.grandchallenges.ca/), funded by the Government of Canada, and the [Thrasher Research Foundation](https://www.thrasherresearch.org/default.aspx) (Early Career Award). Academically, the University of Ottawa, JDW National Referral Hospital, Danish Technical University, and [Massachusetts General Hospital](http://www.massgeneral.org/research/researchlab.aspx?id=1595) are all collaborators. #### Results So Far The team has gathered data, which has resulted in the following publications. - Saadi A, Patenaude B, Nirola DK, Deki S, Tshering L, Clark S, Shaull L, Sorets T, Fink G, Mateen F. Corrigendum to “Quality of life in epilepsy in Bhutan” \[Seizure 39 (2016) 44-48\]. Seizure. 2016 Nov; 42:14. PMID: 27639029. View in: [PubMed](https://www.ncbi.nlm.nih.gov/pubmed/27639029) - Brizzi K, Pelden S, Tshokey T, Nirola DK, Diamond MB, Klein JP, Tshering L, Deki S, Nidup D, Bruno V, Dorny P, Garcia HH, Mateen FJ. Neurocysticercosis in Bhutan: a cross-sectional study in people with epilepsy. Trans R Soc Trop Med Hyg. 2016 Sep; 110(9):517-526. PMID: 27794094. View in: [PubMed](https://www.ncbi.nlm.nih.gov/pubmed/27794094) - Saadi A, Patenaude B, Nirola DK, Deki S, Tshering L, Clark S, Shaull L, Sorets T, Fink G, Mateen F. Quality of life in epilepsy in Bhutan. Seizure. 2016 Jul; 39:44-8. PMID: 27257785. View in: [PubMed](https://www.ncbi.nlm.nih.gov/pubmed/27257785) - Brizzi K, Deki S, Tshering L, Clark SJ, Nirola DK, Patenaude BN, McKenzie ED, McLane HC, Cash SS, Dorji C, Mateen FJ. Knowledge, attitudes and practices regarding epilepsy in the Kingdom of Bhutan. Int Health. 2016 Jul; 8(4):286-91. PMID: 27160683. View in: [PubMed](https://www.ncbi.nlm.nih.gov/pubmed/27160683) - McKenzie ED, Nirola DK, Deki S, Tshering L, Patenaude B, Clark SJ, Cash SS, Thibert R, Zepeda R, Leung EC, Lam AD, Lim AS, Mantia J, Cohen J, Cole AJ, Mateen FJ. Medication prescribing and patient-reported outcome measures in people with epilepsy in Bhutan. Epilepsy Behav. 2016 Jun; 59:122-7. PMID: 27131914. View in: [PubMed](https://www.ncbi.nlm.nih.gov/pubmed/27131914) #### More to Come Keep an eye on Dr. Mateen. We can’t wait to see where she will show up next. --- ***[![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/03/Ruby_June_Cynthia_Harden-8-150x150.jpg "Ruby_June_Cynthia_Harden-8 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/ruby_june_cynthia_harden-8)NEXT UP: Be sure to check out the next post tomorrow by [Dr. Cynthia Harden](http://livingwellwithepilepsy.com) for more on epilepsy awareness. For the full schedule of bloggers visit*** [***livingwellwithepilepsy.com***](http://livingwellwithepilepsy.com/epilepsy-blog-relay)***.*** ***TWITTER CHAT: And don’t miss your chance to connect with bloggers on the [\#LivingWellChat ](http://twubs.com/livingwellchat)on March 31 at 7PM ET.*** ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** International Epilepsy **Tags:** eeg, Epilepsy Blog Relay, global heath, innovation, technology --- ### [Bhutan Epilepsy Project: Interview with researcher Erica McKenzie](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/bhutan-epilepsy-project-interview-with-researcher-erica-mckenzie.html) **Published:** April 3, 2017 **Author:** Jessica K. Smith **Excerpt:** I recently had the opportunity to interview Erica McKenzie, a Bhutan Epilepsy Project researcher, who works with Farrah Mateen MD, PhD. **Content:** [![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/04/IMG_2593-1024x768.jpg "IMG_2593 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/global-epilepsy/bhutan-epilepsy-project-interview-with-researcher-erica-mckenzie.html/attachment/img_2593) If you have been reading Living Well With Epilepsy for a while you may have heard about the [Bhutan Epilepsy Project.](http://livingwellwithepilepsy.com/2014/global-epilepsy/bhutan-epilepsy-project.html) I recently had the opportunity to connect with Erica McKenzie, a Bhutan Epilepsy Project researcher, who works with Principal Investigator, Farrah Mateen MD, PhD, based at Massachusetts General Hospital in Boston. **[![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/04/IMG_0739.jpeg "IMG_0739 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/global-epilepsy/bhutan-epilepsy-project-interview-with-researcher-erica-mckenzie.html/attachment/img_0739)Living Well With Epilepsy: Erica, can you tell us a bit about yourself?** **Erica McKenzie:** Thank you for LWWE’s continued enthusiasm for the Bhutan Epilepsy Project! My name is Erica McKenzie, and I have contributed to the Project since 2014 when we enrolled our first participants. I am a third year medical student at Queen’s University in Kingston, Canada, and I hope to pursue a career in neurology. **LWWE: Can you provide some background on the Bhutan Epilepsy Project?** **EM:** The [Bhutan Epilepsy Project](http://livingwellwithepilepsy.com/2014/global-epilepsy/bhutan-epilepsy-project.html) is a research initiative focused on enhancing the diagnosis of suspected seizure disorders Bhutan by using new mobile technology. We’re interested in assessing the accuracy of a smartphone-based [electroencephalogram (EEG)](http://livingwellwithepilepsy.com/2015/emilys-perspective/emilys-perspective-help-child-eeg.html) in comparison to conventional EEG. The project is a collaborative effort involving patients, neurologists, psychiatrists, computer engineers, EEG technicians and research coordinators from across the world. We enrolled our first participants in the study in July 2014, and the project has only grown from there! **LWWE: Can you describe to us how the smartphone EEG technology works to a non-scientist?** **EM:** The smartphone EEG uses open-source software and the computing power of commercially available mobile devices to wirelessly record brainwaves transmitted from an electrode cap. The device can wirelessly transmit the EEG recordings over long distances, allowing the epilepsy expert interpreting the recording to be located anywhere in the world. The device costs about $300 USD, in contrast to a standard EEG machine that can cost tens of thousands of dollars. It’s also highly portable, which means we can potentially bring the technology to the patients’ doorstep. Another advantage is that the system is easy to use, and a community healthcare worker with only basic training can administer the EEG test. **LWWE: Why Bhutan?** **EM:** Bhutan is a land-locked Himalayan country with a population of about 764,000. It is a lower-middle income country with a largely rural population spread out across mountainous terrain. Prior to the project, there were no neurologists practicing in Bhutan, nor were there functioning EEG services. We chose to roll out the study in Bhutan first because we believe that Bhutanese people with epilepsy could benefit greatly from the smartphone EEG: a portable, low-cost and easy-to-use system could have a significant impact in a country where financial resources for diagnostic testing are limited, patients are spread out across a large geographic area, and there are no EEG technicians available. Bhutan also has endemic neurocystercercosis, a parasitic infection, as a cause of epilepsy, and working in Bhutan gave us the opportunity to study and treat this condition. Finally, we have wonderful collaborators based in Bhutan, including Damber Nirola, Chencho Dorji, and Lhab Tshering. **LWWE: What are some recent successes?** **EM:** We enrolled our first patients in July of 2014, and have now enrolled over two hundred patients! Our paper, “Validation of a smartphone-based EEG among people with epilepsy: A prospective study” was recently published in the journal *Scientific Reports* ([www.nature.com/articles/srep45567](http://www.nature.com/articles/srep45567)). In short, we found that the smartphone EEG is not as sensitive for detecting epileptiform electrical signals as conventional EEG, but that it could be a viable confirmatory test for patients with clinically suspected epilepsy. One of the most gratifying parts of the Bhutan Epilepsy Project has been the opportunity to follow-up with patients enrolled in the study. Based on the diagnostic testing completed as part of the study, neurologists have been able to provide treatment recommendations to help improve seizure management for those in the study. The Project has also included outreach activities to help tackle stigma against epilepsy in Bhutan. This included teaming up with the first Bhutanese cartoon hero, Ap-Bokto, for a cartoon demystifying seizures and epilepsy. It was awesome to work with such a celebrity! **LWWE: What are next steps?** **EM:** We are hoping to investigate new EEG headset devices with different electrode configurations in the hopes of improving the sensitivity of the smartphone EEG system. We’d also like to learn more about whether there are certain populations of people with epilepsy who might benefit most from the smartphone EEG. **LWWE: Are there other areas of the world you are hoping to test the technology?** **EM:** We are currently working with collaborators in Peru who are interested in using the smartphone EEG to assess people with epilepsy. We’re also interested in the technology’s potential to improve access to diagnostics in Northern Canada, where people in many remote communities currently have to fly south to larger centers to receive specialized care. **LWWE: Do you anticipate this type of smartphone EEG could be utilized in the US?** **EM:** Yes, the technology could be useful for contexts where standard EEG services are not readily available, whether that is due to geographic isolation, cost, or lack of skilled EEG technicians. The smartphone EEG may also be of interest to people with epilepsy for home-based diagnostics. #### Learn more For more information on the Bhutan Epilepsy Project visit [http://www.bhutanbrain.com/.](http://www.bhutanbrain.com/) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** International Epilepsy **Tags:** Bhutan Epilepsy Project, Global Epilepsy, Global Epilepsy Care, Global Health --- ### [Emily's Perspective: Emily's First Time Abroad](https://livingwellwithepilepsy.com/life-with-epilepsy/travel/emilys-perspective-emily-traveled-abroad.html) **Published:** July 21, 2017 **Author:** Emily Lawrence (Nee Donoghue) **Excerpt:** I recently traveled abroad with my sister. I was so excited, but as the day got closer, I became worried about all the ‘What ifs’. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/07/IMG-20170621-WA0002-277x300.jpg "IMG-20170621-WA0002 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/aboutus-lwwe/emilys-perspective/emilys-perspective-emilys-first-time-abroad.html/attachment/img-20170621-wa0002)In June I took my first trip abroad with my sister. I was so, SO excited. Although I was excited and I was counting down the days, as the day got closer, the more anxious I became with all the ‘What ifs’. I couldn’t stop thinking about all these scenarios, and I was incredibly nervous about the flight…which is funny because last July I did a wing walk where I was on the outside of a plane! Anyway, I decided I wanted to share a few of the most important bits (to me) with you-and maybe you could learn some things if you, too, haven’t been abroad before. #### Minimizing Stress Having epilepsy does not usually prevent people from traveling by air, but if your seizures are triggered by tiredness, dehydration, excitement or anxiety, I advise making sure you tell the person you are traveling with, even if it does bother you when it comes to opening up about your worries. Obviously my Sister is aware because my family has been on this Epilepsy journey with me since 2006, but a lot of people don’t talk about their condition with family, friends, or the general public. Before you go, Epilepsy Society advise that you check with the airline company you’ll be traveling with about access to medical services. Most cabin crew are trained in advanced first aid which includes how to cope if a passenger experiences a seizure on board. If your seizures are triggered by stress (like mine), then you need to focus on minimizing stress levels. Flying can be stressful, especially if it is your first time, as you have to travel to the airport. We went to Gatwick from our hometown, which was a good few hours. I usually struggle to get to sleep or to sleep through the night when I am anxious, but I have recently started meditation before bed and it helps so much. I do it all the time now even if I am not anxious. #### Relaxation Techniques I advise that you learn some relaxation techniques and practice them earlier in the day so you’re not putting too much pressure on yourself before bedtime. When we relax, our heart rate slows down, breathing becomes slower and deeper, our blood pressure drops or stabilizes and our muscles relax. This all contributes to a good nights rest. Do some research on meditation for yourself to find what you want to try, and practice it even when you don’t think you need it. Not only did we have an early start, we also had the struggle of finding our way around the huge airport. It is advised that you arrive at the airport in plenty of time, and this can help keep stress to a minimum. I know it can be boring when you’re hanging around, but make the most out of all the shops and the food you will be surrounded by! #### Stock up! I took 2 weeks worth of medication with me for my one week holiday. You need to make sure you take extra too in case your medicine is lost or stolen, or you are delayed in getting home. You never know what might happen. I have two medi-packs thanks to my friend Tori Standing. You can get them here [www.medpac.co.uk](http://www.medpac.co.uk) and they are one of the best things I own with regards to my Epilepsy. They are a great way to keep your medication safe and in their original packaging when going through customs. I kept one in my hand luggage with one weeks worth of medication, and another in my suitcase with the extra weeks worth. If you need extra medicine to cover the time you are away, speak to your Doctor. They are usually able to write you a prescription for enough medicine to cover the time you are away. #### Ensure you’re insured! My good friend [Faye](https://twitter.com/fairyfaye1986) told me about finding insurance for me and advised me to get a European Health Card. The European Health Insurance Card entitles UK residents to free or reduced cost emergency medical treatment in other European countries plus Iceland, Lichtenstein, Norway and Switzerland. The EHIC is free and can be obtained through your local post office or online. I know I have a few readers from UK residents so if you didn’t know about that, I hope it helps. Insurance-wise, it is vital no matter which countries you are visiting. Make sure you provide your insurance company with as much information as possible about your Epilepsy and the type, frequency and severity of your seizures. This will affect the premium on your policy and the cost will rise, but it will also give you peace of mind that you will be covered if necessary. I went through Epilepsy Action for my insurance, they work with [Insurancewith ](https://www.insurancewithpartners.com/EpilepsyAction/quote/)to offer a travel insurance policy for people with epilepsy, which includes cover for epilepsy related incidents. My last medical tip for you is to wear medical jewelry. You can get some pretty and fashionable bracelets if you’re worried about what you look like. I personally have a red bracelet that simply says ‘Epileptic’ in bold writing, and I carry emergency contact details with me as well as a [Tap2Tag](https://www.tap2tag.me/) bracelet sent to me by Tori Standing. When I am with my family I don’t worry as much because they know everything they need to. Make sure you have details with you like an ID card. Remember: Just be yourself and have FUN! ***Disclosure: This blogger did not receive any compensation for mentioning the products above.*** ![author avatar](https://secure.gravatar.com/avatar/5523d28ae8bbaedc9d082d51d29393ca490379cd31464b99ab3c7d50a49362ac?s=300&d=mm&r=g) Emily Lawrence (Nee Donoghue) 25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England. Emily's Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10. Based in UK. [See Full Bio](https://livingwellwithepilepsy.com/author/emilyd) [ ](https://livingwellwithepilepsy.com/author/emilyd) **Categories:** Travel **Tags:** Travel --- ### [Emily challenges the status quo of her mood](https://livingwellwithepilepsy.com/life-with-epilepsy/mentalhealth/emily-challenges-the-status-quo-of-her-mood.html) **Published:** September 12, 2017 **Author:** Emily Lawrence (Nee Donoghue) **Excerpt:** A lot of things are hard when you’re in a bad mood. Even getting up in the morning and finding the energy to do everyday tasks can be hard. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/09/lwwe-photo-e1505917533616.jpg "lwwe photo – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/livingwell/emily-challenges-the-status-quo-of-her-mood.html/attachment/lwwe-photo)Hi readers, long time no speak. I hope you are OK. I know it’s been a while, things have been hard recently. In August I ended up in hospital again after having seizures without regaining consciousness. I also had intense vertigo which I have never experienced before. I felt like I was constantly on a roundabout that I couldn’t get off. I was signed off work for two weeks but got back into the swing of things again a few weeks ago. I feel like it is a huge balancing act at the moment, we’re trying hard to get the right medications to suit me so I can have a seizure free streak again. #### The urge to run Do you ever have the urge to run away? Not run away from home, not run away from the people you love, but to run away from the problems in your mind? Not the urge to pack your bags and go. I get this urge less frequently than I did in the past when I suffered from severe anxiety, but it still brews within my mind sometimes. I have a desire for adventure and trying new things, but at the minute I am stuck. A lot of things are hard when you’re feeling low. Getting up in the morning can be hard. Finding the energy to do everyday tasks can be hard. But changing yourself and your thoughts is especially hard. #### Mood and Epilepsy I want to talk about one of the things that can come hand in hand with Epilepsy. That thing is mood. I don’t often talk about these things so I’d like to break some of the views that I am always a bubbly person. I don’t mean that to sound negative, I want it to be realistic because a lot of my readers often say they feel bad that they’re not as positive as I am. I work out between 4 to 5 days a week. I eat healthy meals, only occasional bad foods. I drink over the daily amount of water needed. **I take good care of myself—on the outside. On the inside, I have been hiding my problems. I use quick-fixes. I have been convincing myself I am okay. I haven’t been taking care of myself emotionally. I am very much ‘I will deal with it later’. #### Keeping It Secret Other than talking to Dan and a few family members and colleagues, I’ve kept my struggles mostly secret because I don’t like drama. When I began treating my low mood and anxiety these past couple of months, I had to confront my own thinking patterns. The negative thoughts were not helping me. I promote positivity, but forget to put myself first sometimes. If I wanted to be the usual happy Emily, I had to learn to think more positively, or, at the very least, realistically about things. ### *Instead of telling myself ‘Today is going to be bad,’ I had to begin telling myself ‘Today will be a good day’* #### Change of Perspective The change in perspective has helped a lot. Though it’s not a perfect fix yet, it is getting there. There’s a bit of a learning curve to it, but eventually it starts to feel natural to challenge the negative thoughts. The main cause for me feeling like this recently is the balancing act of medications. That’s the thing with Epilepsy, it isn’t always easily controlled. You can’t just have medication, you can’t just have brain surgery and everything is solved. It can be a whole different game. Did you know out of the 600,000-people living with epilepsy in the UK, around 288,000 are still experiencing seizures? It is estimated that with better treatment 108,000 more people could become seizure free. #### Next Time Watch for my next column on 4 reasons why you might be in a bad mood and a few tips to help! ![author avatar](https://secure.gravatar.com/avatar/5523d28ae8bbaedc9d082d51d29393ca490379cd31464b99ab3c7d50a49362ac?s=300&d=mm&r=g) Emily Lawrence (Nee Donoghue) 25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England. Emily's Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10. Based in UK. [See Full Bio](https://livingwellwithepilepsy.com/author/emilyd) [ ](https://livingwellwithepilepsy.com/author/emilyd) **Categories:** Mental Health --- ### [She said: Emily and Dan on dating and epilepsy](https://livingwellwithepilepsy.com/life-with-epilepsy/relationships/she-said-emily-and-dan-on-dating.html) **Published:** February 13, 2018 **Author:** Emily Lawrence (Nee Donoghue) **Excerpt:** I met Daniel properly in 2014. He had read a lot of my blogs before we even started talking, so he knew all about my condition. So I never had to break it to him that I live with this unpredictable condition of Epilepsy. Sometimes that can be one of the hardest parts in the beginning of a new relationship. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/02/Screen-Shot-2018-02-02-at-8.28.07-AM.png "Screen Shot 2018-02-02 at 8.28.07 AM – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/livingwell/relationships/she-said-emily-and-dan-on-dating.html/attachment/screen-shot-2018-02-02-at-8-28-07-am)I met Daniel properly for the first time on the 4th May 2014. He had read a lot of [my blogs](https://livingwellwithepilepsy.com/2013/personal-epilepsy-stories/tonic-clonic-seizures.html) before we even started talking, so he knew all about my condition. He knew my younger brother, Joe, who had also mentioned a few things here and there, so I never had to break it to him that I live with this unpredictable condition of [Epilepsy](https://livingwellwithepilepsy.com/what-is-epilepsy). Sometimes that can be one of the hardest parts in the beginning of a new relationship. #### On dating My seizures used to be controlled (somewhat) when we first met. So I never really addressed what could happen, other than if he suggested we go to certain places, and if I thought it could be a possible trigger, I’d suggest we did something else and he was completely fine with it. I remember the first time Daniel and I went to see a film at the cinema in town. I remember vividly panicking in my mind that “*What if there are flashing lights that we’re not warned about and I have a seizure? What will he think when he sees it happen for the first time.*” One thing that worried me most was the fear of losing bladder control from a seizure. I can’t even believe I have written that for the whole world to read, but it’s a reality. A [Tonic-Clonic](https://livingwellwithepilepsy.com/2016/epilepsy-blog-relay/nov16rachelehrhardt.html) seizure, the type most people know, causes you to lose consciousness and often collapse. During the clonic phase, muscle contractions cause your body to jerk. Your jaws clamp shut and you may bite your tongue. Your bladder may contract and cause you to urinate. It is embarrassing no matter how many times it happens and where it happens, it’s natural to feel this way. > On Dating: “*What if there are flashing lights that we’re not warned about and I have a seizure? What will he think when he sees it happen for the first time.*” #### A relationship made stronger I think because I was diagnosed with epilepsy before I had even thought about dating someone, it wasn’t so hard for me, because it was all I knew. But I think it was also easier for me as Dan had read about me in the news (For epilepsy related projects, nothing bad) and he knew a lot about me before I had even introduced myself. At the end of the day, if there is a problem when you tell a person you meet about your condition, then they’re not the right person for you. #### Having a support network I am really close to my family and have a wonderful support network of friends, but honestly Daniel is the most important source of emotional and practical support for me. Although I didn’t have him when I was diagnosed at the age of 10, he has seen me through continued diagnoses and hospital admissions and appointments. Emotional support from partners is extremely important and I have met a lot of people who would rather talk about epilepsy and their feelings with their partners than with parents or family. #### When things get tough The hardest time for both myself, my family and Dan, was in August 2017, when I had my biggest seizure to date. I went into what is called **Status Epilepticus** and I didn’t regain consciousness for almost 13 hours. My heart beat dropped so low that Daniel, as a nurse, knew the dangers of what was possible in those 13 hours, but he stayed strong for my parents. I remember waking up. I took a big breath and woke up to the pervasive smell of hospital, you know that medical smell, invading my mouth and nose–so strong that I could taste it. The room seemed silent apart from my heavy breathing under the oxygen mask and the beep sound of the BP machine and heart monitor next to me indicating that I was somewhat alive, I didn’t feel it though. I slowly opened my eyes, they felt all stuck together and it took a moment to get my vision slightly clear enough that I could see where I was. I could see medical equipment all around me, the rails of the bed up by my face. Everything was blurry, then I realized I didn’t have my glasses on. I glanced around and took in the neutral hospital colours. How long have I been here? I shut my eyes, trying to remember what had exactly happened. I remembered nothing. I opened my eyes again and first thing I said was “*Where’s Dan*?” I wanted my parents too, but Dan was the first person that came to mind. I heard a little voice of “*I’m here*” as he grabbed my cannulated hand over the hospital bed tightly. I was a mess, emotionally and appearance wise but at that moment in time, I didn’t care and neither did he. He, my Mum and my brother’s girlfriend, Emily, had sat with me from the moment I went into the blue lighted ambulance, ‘til the moment I woke up. Mum and Emily went home to get my things, and Dan stayed with me until the moment I was taken to a ward until visiting time was over. I don’t remember getting to the ward, I was slipping in and out of consciousness again for hours after initially waking up, but every time I woke, Daniel was there to hold my hand. Mum and Emily were there too of course, but as family they would be there because that’s what family do. I have heard a lot of sad stories over the years, and Dan had every opportunity in the world to say “You know what, I don’t think I can cope being with someone I could lose to this uncontrolled condition at any minute” but he hasn’t, and I know he never will. #### A little advice One thing I can advise partners to do when it comes to supporting their loved one in times of need, is to speak in a loving tone more than they ever would, and remember to smile. Almost half of communication is tonal and a little more than half is visual. Speaking in a sincere and loving tone will let your loved one know you are coming from a caring place. ***“Thank you Dan, for being there for me, hand in hand, every minute of every day.*** *I could conquer the world with just one hand, as long as you are holding the other.”* #### #### DON’T MISS: Dan’s side of the story, later this week! ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/02/Screen-Shot-2018-02-02-at-8.27.36-AM-300x293.png "Screen Shot 2018-02-02 at 8.27.36 AM – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/he-said-emily-and-dan-on-dating-and-epilepsy.html/attachment/screen-shot-2018-02-02-at-8-27-36-am)*** ![author avatar](https://secure.gravatar.com/avatar/5523d28ae8bbaedc9d082d51d29393ca490379cd31464b99ab3c7d50a49362ac?s=300&d=mm&r=g) Emily Lawrence (Nee Donoghue) 25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England. Emily's Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10. Based in UK. [See Full Bio](https://livingwellwithepilepsy.com/author/emilyd) [ ](https://livingwellwithepilepsy.com/author/emilyd) **Categories:** Relationships --- ### [He said: Emily and Dan on dating and epilepsy](https://livingwellwithepilepsy.com/life-with-epilepsy/relationships/he-said-emily-and-dan-on-dating-and-epilepsy.html) **Published:** February 15, 2018 **Author:** Guest Contributor **Excerpt:** I remember when Emily and I were first dating. My friends would ask me, “Aren’t you worried about what would happen if she has a seizure? Can you deal with that?” I would always find that such a strange question. I wanted to be with Emily for who she was as a person. **Content:** #### ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/02/Screen-Shot-2018-02-02-at-8.30.42-AM.png "Screen Shot 2018-02-02 at 8.30.42 AM – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/he-said-emily-and-dan-on-dating-and-epilepsy.html/attachment/screen-shot-2018-02-02-at-8-30-42-am)***Dan’s Story I remember when [Emily](https://livingwellwithepilepsy.com/2018/livingwell/relationships/she-said-emily-and-dan-on-dating.html) and I were first dating a few years ago. My friends would ask me, “Aren’t you worried about what would happen if she has a seizure? Can you deal with that?” I would always find that such a strange question. I could never see how having epilepsy would ever be a problem in our relationship as much as having asthma or another medical condition would be for others. For me, it was such an insignificant issue. I wanted to be with Emily for who she was as a person. #### On Dating I will admit that during our first few months once we were in a relationship, I would always worry what to do if she had a seizure as I had never seen one before. But, Emily was always so [supportive in educating me ](https://livingwellwithepilepsy.com/2016/aboutus-lwwe/emilys-perspective/my-familys-epilepsy-experience.html)on what to do and what to expect, which really did make the difference. Though there will always be some worry in the back of my mind of ‘*What if something goes wrong’* because she’s my soulmate, and I don’t want anything to ever happen to her. #### When things get tough I remember most recently when [Emily ended up in hospital](https://livingwellwithepilepsy.com/2015/aboutus-lwwe/emilys-perspective/emilys-perspective-what-one-word-describes-how-you-feel-about-epilepsy.html) in a bad state, my heart sank. Seizures can make someone so vulnerable. Although I’m a nurse and I’m used to seeing patients in hospital beds, nothing could prepare me to see her in that bed, all her IVs up and her body almost lifeless. It broke my heart to see her like this but I knew I had to stay strong for her and just be by her side. #### Last thoughts Experiences like that make our relationship stronger because we support each other. We really do appreciate every bit of good health and time that we spend together. I am so proud to be Emily’s partner, and feel lucky that I get to be by her side supporting her through her writing, her support groups and charity work. Her motivation and passion for life is an inspiration, and I am glad to be a part of her journey. #### DON’T MISS: [You can read Emily’s side of the story here!](https://livingwellwithepilepsy.com/2018/livingwell/relationships/she-said-emily-and-dan-on-dating.html) ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/02/Screen-Shot-2018-02-02-at-8.27.36-AM-300x293.png "Screen Shot 2018-02-02 at 8.27.36 AM – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/he-said-emily-and-dan-on-dating-and-epilepsy.html/attachment/screen-shot-2018-02-02-at-8-27-36-am)*** ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Relationships --- ### [Epilepsy Blog Relay: Emily on finding comfort when seizures return](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/emily-on-finding-comfort-when-seizures-return.html) **Published:** March 23, 2018 **Author:** Emily Lawrence (Nee Donoghue) **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/03/27332499_2009974339256103_3442678694767666891_n-240x300.jpg "27332499_2009974339256103_3442678694767666891_n – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/aboutepilepsy/global-epilepsy/emily-on-finding-comfort-when-seizures-return.html/attachment/27332499_2009974339256103_3442678694767666891_n)***This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay) which will run from March 1 to March 31, 2018. Follow along!*** Hi Living Well family, I feel like it’s been a while. I’m OK though. A couple of weeks ago, I sadly ended up in hospital after suffering a seizure that involved a nasty fall and bump to the head. I haven’t been on a ward since August so I was really discouraged by it. I’ve been wanting to take some time to myself to regain the strength I feel like I have lost after doing so well. I know it’s not the end of the world, but it does get you down sometimes. After some emergency CT scans and heart tests, I was sent home a couple of days later. Someone said to me the other day ‘You could die tomorrow, so live for today.’ And another said ‘Try to remember that although some people have it betters than you, others have it worse’ and it’s had me thinking. If someone said that to me a couple of years ago I would’ve felt so upset by it, because why does knowing someone else has it worse make my situation any better? But I appreciate things more now and it made me feel positive enough about things, to keep going. Life is unpredictable. I, or anyone, could be gone tomorrow, so why do I waste my time worrying and feeling down about Epilepsy? I have two voices going on; one saying ‘Stop Worrying’, the other saying ‘Why do I keep taking steps back. Will this ever get controlled?’ I feel like such a hypocrite giving advise when I can’t follow it myself, but I know how many people have found my tips helpful so I want to continue to help others with the hope that I can then read my blogs back and help myself, you know? **Live for today** Live for today, soak in every moment. Spend time doing all that you love, all that you enjoy and all that you appreciate. Love every second of it. Epilepsy can disable you from doing things that others enjoy doing, but don’t let it stop you finding things that you can do despite having the condition. Allow your condition to make you feel happy with how you have managed to spend your time on earth, to feel strong enough to conquer life’s hurdles. Live for today so you can enjoy your future. **Do I keep going?** YES When I’m not making any progress, I keep going. When I don’t feel motivated, I keep going. When I feel like giving up, I keep going. I’m telling you this so you do it too. Keep going. **Don’t allow your current feelings to stop you from proceeding to live.** It can be hard to cope with a long-term medical condition such as epilepsy. For some people, it can lead to feeling sad, anxious, embarrassed, or even angry. These negative emotions can lead to depression. **If you need a break, take it, but don’t walk away for good.** I want you to know that you are not alone on this difficult journey. Because Epilepsy is so difficult, but it is also rewarding. Look at how far you’ve come, even though you’ve more than likely felt like the condition has hindered you. Look how far you’ve come even when you have felt like you’ve actually made no progress. I wouldn’t be where I am today if I had stopped moving forwards despite wanting to give up years ago. Sometimes I feel like I have made no progress, but then I look back to a few years ago and I have made it a long, long way. The biggest reason to take a little time out and concentrate on yourself is to avoid the negative consequences of not doing so. You time can make you a better person both inside and out. Taking a break can help you feel less tired, anxious or depressed. The lack of time to yourself can cause you to build up problems that can harm you. You can feel angry over little things that then turn into bigger things. I feel selfish taking the needed time out when there’s so much left to do. But my family have told me that if I run myself into the ground I am not going to be much help to anyone, and I won’t be able to be fully engaged in my activities anyway. My health started to slip and my family noticed so. Your health is vital, you need to recharge your batteries every once in a while. You don’t need to take a holiday or spend money to have some time to yourself. You can simply sit back and read a book. Listen to music, or make music of your own. Maybe keep a diary, go out and do some photography. How about catching up on some series on TV, do some art or take a walk. I find when it comes to Epilepsy, enjoying the outdoors helps me mentally and also physically. I am always anxious going out alone as my seizures are occasionally unpredictable, but if I take a walk where there are people around I feel a lot safer. Taking a little time for yourself refreshes and re-energizes you. It allows you to think more clearly and make better decisions. You are very special and important and deserve to have a little time to yourself. Relaxing and having charged batteries helps you sleep better (which I have been lacking recently). Tiredness is a huge trigger for me so it’s a crucial part of reducing seizures for me. This isn’t my greatest column, but the main thing I wanted to say is to not give up. Things get hard, but you can get through them. > “Embrace who you are and your divine purpose. Identify the barriers in your life, and develop discipline, courage and the strength to permanently move beyond them, and keep moving forward.” > ― [**Germany Kent**](https://www.goodreads.com/author/show/8557658.Germany_Kent) I’ll be back again soon. But for now, hang in there. --- **NEXT UP:** Be sure to check out the next post tomorrow by Jade at [www.jadenelson.net](http://www.jadenelson.net). For the full schedule of bloggers visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). **TWITTER CHAT:** And don’t miss your chance to connect with bloggers on the [\#LivingWellChat](https://www.facebook.com/events/205528086692429/) on April 2 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/5523d28ae8bbaedc9d082d51d29393ca490379cd31464b99ab3c7d50a49362ac?s=300&d=mm&r=g) Emily Lawrence (Nee Donoghue) 25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England. Emily's Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10. Based in UK. [See Full Bio](https://livingwellwithepilepsy.com/author/emilyd) [ ](https://livingwellwithepilepsy.com/author/emilyd) **Categories:** International Epilepsy --- ### [The Guinea Epilepsy Project conducts 300 patient visits free of charge](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/the-guinea-epilepsy-project.html) **Published:** April 10, 2018 **Author:** Jessica K. Smith **Excerpt:** I recently had the opportunity to speak to Farrah Mateen, MD, PhD, Massachusetts General Hospital/Harvard Medical School, the principal investigator on The Guinea Epilepsy Project. This is the latest in a series of global health projects Dr. Mateen has led, including The Bhutan Epilepsy Project. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/04/Mateen-bio-photo.jpg "Mateen-bio-photo – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/aboutepilepsy/global-epilepsy/the-guinea-epilepsy-project.html/attachment/mateen-bio-photo)I recently had the opportunity to speak to [Farrah Mateen, MD, PhD, Massachusetts General Hospital/Harvard Medical School](http://www.massgeneral.org/neurology/research/researchlab.aspx?id=1663&display=group-members), the principal investigator on The Guinea Epilepsy Project. This is the latest in a series of global health projects Dr. Mateen has led, including [The Bhutan Epilepsy Project](https://livingwellwithepilepsy.com/2017/aboutepilepsy/bhutan-epilepsy-project-interview-with-researcher-erica-mckenzie.html). She took a moment to share some background on this important project. **Living Well With Epilepsy: Dr. Mateen would you give us an overview of the Guinea Epilepsy Project?** **Farrah Mateen, MD, PhD:** Our project – the Guinea Epilepsy Project – is a multi-country collaborative effort, taking place at Ignace Deen Hospital in Conakry. The Ignace Deen Hospital is a large academic public assistance hospital and one of two teaching hospitals of the University of Conakry. Led by Farrah Mateen, MD, PhD, Massachusetts General Hospital/Harvard Medical School, and Cisse Abass Fode, MD, Ignace Deen Hospital/University of Conakry, with additional leadership by Sakadi Foksouna, MD, Chad, and Nana Rahamatou Tassiou, MD, Niger, the Guinea Epilepsy Project has now conducted >300 patient visits free of charge for people with epilepsy. ![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/04/IMG_80021.jpg "IMG_8002(1) – Living Well With Epilepsy") **LWWE: Why did you feel Guinea would be the best fit for your project?** **FM:** The Republic of Guinea is a beautiful West African country with a population of 12 million. The capital city, Conakry, has a population of 1.7 million, and is the main urban center and port city for the country. The people of Guinea were recently affected by the Ebola Virus Disease outbreak, leading to significant stress on their already limited health care resources. There are few neurologists in Guinea. The country is warm, welcoming, and vibrant. It is a young and growing population with many neurological needs. **LWWE: What do you hope to accomplish with the Guinea Epilepsy Project?** **FM:** The Guinea Epilepsy Project aims to provide free antiepileptic medications and test a low-cost, smartphone-based EEG to aid in epilepsy diagnosis and treatment decisions in under-served patient groups. We will also determine the impact of epilepsy and quantify the prevalence of risk factors, seizure-related injuries, and traditional medicine use in the goal to de-stigmatize epilepsy and encourage therapeutic options in epilepsy care. **LWWE: What successes have you seen come out of the project?** **[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/04/3-Copy1-300x225.jpg "3 - Copy(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/aboutepilepsy/global-epilepsy/the-guinea-epilepsy-project.html/attachment/3-copy1)FM:** The research team saw >300 patients, with a focus on children, in 2017, providing epilepsy consultations, making medication recommendations, and supplying free medications and folic acid. [*Radio Television Guinea*](http://rtg-conakry.com/) interviewed the team about the project, care being provided, and causes of epilepsy on several occasions. Many patients had seizure-related injuries including severe burns and most had experienced >100 seizures in their lifetime. Very few patients had received an EEG, CT, or MRI of their brain as part of their care. Our work aims to modernize epilepsy care to improve diagnosis and treatment for epilepsy patients in Guinea. **LWWE: What are your next steps with the Guinea Epilepsy Project?** **FM:** There is much more work to do. We thank the [Charles Hood Foundation in New England](http://charleshoodfoundation.org/) for their major support of this work to date. We are also actively partnering with new groups to ensure that more people in Guinea can live well with epilepsy! #### Thank you Thank you so much Dr. Mateen for taking a moment to bring us up to speed on your latest project. To connect with Dr. Mateen to learn more about The Guinea Epilepsy Project, contact the [MGH Global Neurology Research Group](http://www.massgeneral.org/neurology/research/researchlab.aspx?id=1663&display=group-members). ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** International Epilepsy --- ### [Epilepsy Blog Relay: Life with Epilepsy in Kenya](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/epilepsy-blog-relay-life-with-epilepsy-in-kenya.html) **Published:** June 1, 2018 **Author:** Guest Contributor **Content:** [![epilepsy in Kenya](https://livingwellwithepilepsy.com/wp-content/uploads/2018/04/Richard-1-e1527111435604-289x300.jpg "Richard-1 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/richard-1)**This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from June 1 to June 30, 2018. Follow along!** #### Rich’s Story Symptoms of having Epilepsy were evident but not confirmed by a medical practitioner since 2002. Due to lack of epilepsy information I lived with it until the episodes exceeded. I was given some medication to take on a daily basis. In 2009, I personally initiated the journey to determine the cause of the condition. #### Diagnosed with epilepsy in Kenya Due to the premium pricing of the MRI & CT Scan services in my country, Kenya i choose to do a CT scan as it was more affordable to my family members. The report wasn’t detailed but I was diagnosed with [epilepsy](https://livingwellwithepilepsy.com/about-epilepsy) and given a list of drugs to control the condition and encouraged to attend to some check ups. The check ups didn’t make any difference, the neurologist only changed the dosage at every visit. I gave up as the check ups were costly and made no impact. Carbamazepine & Rivotril are the drugs I have been using since 2009 to date. My age and weight are the primary determinants a local medical practitioner has been using to fix my dosage. #### Education and Epilepsy My A level education wasn’t easy for me. I had to re-read assignments, sometimes three times, to grasp the content. I noted some memory issues. Due to the effort though, I scored a B-. My three years in college weren’t that hectic as I only chose to read when I was comfortable. (Reading had turned to be stressful to some point of which I avoided as it was a trigger to my seizures). I completed my Diploma in Administration with an Upper Credit and was comfortable with the score basing on the ability to hold the content for longer. I understood it was a primary side effect of the anti-epileptic drugs i was on. Life after college wasn’t easy, I tried to work in a restaurant but couldn’t manage due to the working conditions which were triggering several episodes at the workplace. Wth no workers health insurance, the employer couldn’t accommodate me but had the courtesy to give me a chance and decide if I could keep working for the company. For the sake of my health, I had to quit the job. I had some 20 USD savings, I chose to venture in business as an alternative to other forms of employment. I have been working so hard with my condition being one of my motivators. I begun the business small, to date I can list some of my achievements. #### Life in Kenya with epilepsy Relationship wise most ladies couldn’t accept to go beyond marriage for reasons I assumed were my condition. The situation was really depressing until I met a lady whom on the first night at my place managed to do some first aid after I had a seizure. I concentrated on her & thanked her for her amazing effort. After some months of dating I officially married the lady. We are happily married, I experience less seizures as there’s someone in to listen to me by the end of the day. Though my daily activities are always tiresome from 6am to 8 pm. I believe my wife has helped reduce my triggers. Persons living with epilepsy in Kenya find it difficult to access affordable medical services, lack of support to advocacy groups, awareness on epilepsy management and control. The government systems don’t actualize epilepsy related policies. Epilepsy drugs are expensive with limited price control by the governments. With these factors pending, number of persons living with epilepsy keep rising. Advocacy should be done to educate the public on epilepsy as part of the Persons with Disability (Pwd’s) and accord them necessary psychological support. --- **NEXT UP:** Be sure to check out the [next post by Brodi](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-participants) at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com). **TWITTER CHAT:** Save the date for the #LivingWellChat on June 30 at 7PM ET. [![epilepsy blog relay](https://livingwellwithepilepsy.com/wp-content/uploads/2018/05/june-2018-social-EBR1-150x150.png "june 2018 social EBR(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-participants/attachment/june-2018-social-ebr1)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our [generous sponsors and partners](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-sponsors-and-partners)! [Participate as a November Blogger ](http://bit.ly/Nov18EBRForm) [Become a November Sponsor ](http://bit.ly/1819EBRMk) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** International Epilepsy --- ### [Epilepsy Blog Relay: Emily on Smart Monitoring her epilepsy and seizure alert systems](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/smart-monitoring-epilepsy-and-seizure-alert-systems.html) **Published:** June 9, 2018 **Author:** Emily Lawrence (Nee Donoghue) **Content:** **[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/06/Emily-Dan-248x300.jpg "Emily & Dan – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/jun-18-ebr-posts/smart-monitoring-epilepsy-and-seizure-alert-systems.html/attachment/emily-dan) This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-mar-2016-participants) which will run from June 1 through to the 30th. Follow along and add comments to posts that inspire you!** #### Smart Monitoring my Epilepsy Let’s get real, having a condition ***can*** make you feel bad, physically or emotionally, and sometimes both. I take three lots of Epilepsy medications, which come with three different types of [side effects](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/jun-18-ebr-posts/living-with-side-effects.html). It’s easy to feel down. [Epilepsy can restrict you from things you were once able to do](https://livingwellwithepilepsy.com/2016/epilepsy-blog-relay/its-who-i-am.html), or things you wish you could do but can’t. For example, I have never learned to drive because I was diagnosed before I even thought about driving. I have almost reached the seizure free mark to be able to start lessons, but not quite made it each time. It gets you down and that is OK, because we are all effected differently, but we need to keep going. #### Epilepsy SmartWatch A few months ago my Auntie kindly bought me the Epilepsy SmartWatch by Epilepsy Solutions\*. *This is not a paid article, and I have not been asked to write about this.* Technology is incredible and there are Seizure alert systems, which are designed to [detect seizures](https://livingwellwithepilepsy.com/?p=100071) and let someone know so they can help you. They include: - Epilepsy smartwatches - Bed alarms designed to detect sleep seizures also known as Nocturnal Seizures - Video movement sensors - Mobile phone apps[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/06/smart-watch-300x167.png "smart watch – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/jun-18-ebr-posts/smart-monitoring-epilepsy-and-seizure-alert-systems.html/attachment/smart-watch) #### Giving the watch a try I have tried bed alarms and fall alarms, but the watch is something else. I feel so much more confident since getting it, and my family are at ease a lot more. The watch is discreet and it doesn’t shout out ‘I have a medical condition’ which some people don’t like when it comes to medical jewellery. I don’t live with my parents anymore, two years ago I moved out and it was a big deal. My [seizures](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/mar-18-ebr-posts/epilepsy-blog-relay-seizure-detection-and-prediction.html) are unpredictable, I can be controlled for months and months and then they start up again for long periods of time. The fear for my family was-Will I wake up if I have a seizure and Dan isn’t around, how will they know if I have had one? For over a year I have been texting my Mum in the morning as soon as I wake up, throughout the day and then last thing at night. I’m lucky in the sense that I know if I am going to have a seizure, and I normally have enough of a warning for me to text or call for help. After having three hospital admissions in the space of a few months, I got the watch. You pay a monthly fee much like a phone contract-and when you feel unwell you press the help icon and it texts your selected contacts, and if it detects convulsions it will also send an emergency text. I wrote about the smart watch in the March blog relay 2016 but never thought I would be able to have one. It has saved my life. I had a seizure a few weeks ago and without the watch my family would have not known, and I was very unwell. For one in three patients, seizures remain uncontrolled because no available treatment works for them. These are the great challenges we continue to tackle. Breakthrough science and technology can help unlock better ways to care for and treat patients living with epilepsy. Whether it is helping find a therapy that works for an individual patient or finding new ways to treat the root cause of condition, we together can unlock the science and find new ways to improve the lives of patients. Having wearable technology or bed alarms wont fix your seizures, but it can make living with them a lot more bearable. #### Phone Apps Alongside the smart watch, I have downloaded EpSMon: Epilepsy Self-Monitoring app on my mobile. Again this is not a paid article. I met Simon Lees, a Trustee of SUDEP Action, who told me about the app himself. Simons brother, John, was diagnosed with epilepsy at university and sadly died from [**SUDEP**](https://livingwellwithepilepsy.com/2010/epilepsy-news/45000-sudden-unexplained-deaths-in.html) in 1995. He was 41. Simon was 26 when he was then diagnosed with epilepsy. The award-winning app **EpSMon** can help you self-monitor in between your visits to doctors. When you first download it, after answering a short assessment, the app will produce an easy to read summary showing you: • which risks are getting better • which have worsened • and which have stayed the same with your epilepsy, mood and other associated conditions. #### Life is a little easier Technology is amazing, and by having simply two things-the watch, and an app, I have been able to manage things a lot easier. It’s still hard, but it’s getting better. After everything that comes with Epilepsy, we need to remember that each one of us is one of a kind. When we cherish our eccentricities, and celebrate our flaws, we begin to develop a deep love for ourselves just as we are. Instead of focusing on all the things wrong with us, self-celebration enables us to derive deep satisfaction from being uniquely us. Practice self-celebration by enjoying your awkward laugh or poking fun at your inability to remember people’s names. *\*Living Well With Epilepsy, and our writers, **did not** receive any compensation or product from Epilepsy Solutions or their affiliates.* --- **NEXT UP:** Be sure to check out the next post by Soo at . **TWITTER CHAT:** Save the date for the #LivingWellChat on June 30 at 7PM ET. [![epilepsy blog relay](https://livingwellwithepilepsy.com/wp-content/uploads/2018/05/june-2018-social-EBR1-150x150.png "june 2018 social EBR(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-participants/attachment/june-2018-social-ebr1)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our [generous sponsors and partners](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-sponsors-and-partners)! [Participate as a November Blogger ](http://bit.ly/Nov18EBRForm) [Become a November Sponsor ](http://bit.ly/1819EBRMk) ![author avatar](https://secure.gravatar.com/avatar/5523d28ae8bbaedc9d082d51d29393ca490379cd31464b99ab3c7d50a49362ac?s=300&d=mm&r=g) Emily Lawrence (Nee Donoghue) 25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England. Emily's Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10. Based in UK. [See Full Bio](https://livingwellwithepilepsy.com/author/emilyd) [ ](https://livingwellwithepilepsy.com/author/emilyd) **Categories:** International Epilepsy --- ### [Epilepsy Blog Relay: The story of the Mahenge Epilepsy Clinic](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/the-story-of-the-mahenge-epilepsy-clinic.html) **Published:** June 12, 2018 **Author:** Maureen Knorr **Content:** **[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/06/LWWE1.jpg "LWWE1 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/aboutepilepsy/global-epilepsy/the-story-of-the-mahenge-epilepsy-clinic.html/attachment/lwwe1)This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from June 1 to June 30, 2018. Follow along!** #### Mahenge Epilepsy Clinic It started in the late 1950’s when Dr. [Louise Jilek-Aall](http://www.mentalhealth.com/books/lja/lja-summ.html) discovered an unusually high number of outcasts from the Wapogoro tribe in the Mahenge Mountains, Tanzania. These outcasts suffered from Kifafa, Swahili for epilepsy. The people with kifafa were feared and shunned, as the tribe believed evil spirits caused convulsions. It was noted that even many times their own families wouldn’t assist them during seizures out of fear that they too would become possessed. Because of this, epilepsy patients also suffered from physical wounds such as, fire burns, scrapes, head injuries, bruising, and in some cases death from downing or prolonged exposure to fire. There was no access to medical treatment and no knowledge of the disorder, so the patients lead miserable, lonely lives in fear of their next seizure. Dr. Louise Jilek-Aall founded the “[Mahenge Epilepsy Clinic](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/mar-17-ebr-posts/epilepsy-blog-relay-epilepsy-advancements-in-developing-countries.html)” in 1960 after bearing witness to this suffering. Changing the lives for hundreds suffering from epilepsy and enlightening the community on the disorder. In the first two years, 200 patients were treated with AEDs (antiepileptic drugs). Eventually she left the clinic in care of Catholic missionary and local volunteers, continuing to send the AEDs from abroad. She returned in 1990 to a clinic that was treating 900 patients! The majority of these patients were living with their families, participating in society, and leading close to normal lives. Today, the clinic receives AEDs from the government and is still treating those with epilepsy. What an amazing difference one woman can make. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/06/11108883_1577079885889436_2669415667595660060_n-640x853.jpg "11108883_1577079885889436_2669415667595660060_n – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/aboutepilepsy/global-epilepsy/the-story-of-the-mahenge-epilepsy-clinic.html/attachment/11108883_1577079885889436_2669415667595660060_n) [Click here ](http://mahenge.wordpress.com/about/mahenge-epilepsy-clinic/)to learn more about Dr. Louise Jilek-Aall and the Mahenge Epilepsy Clinic. --- **NEXT UP:** Be sure to check out the next post by Kristine at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com). **TWITTER CHAT:** Save the date for the #LivingWellChat on June 30 at 7PM ET. [![epilepsy blog relay](https://livingwellwithepilepsy.com/wp-content/uploads/2018/05/june-2018-social-EBR1-150x150.png "june 2018 social EBR(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-participants/attachment/june-2018-social-ebr1)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our [generous sponsors and partners](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-sponsors-and-partners)! [Participate as a November Blogger ](http://bit.ly/Nov18EBRForm) [Become a November Sponsor ](http://bit.ly/1819EBRMk) ![author avatar](https://secure.gravatar.com/avatar/21dd1cb76084b50fb7cccc4f2b6135cd43d1c082e5b039d6d4a99606803dc749?s=300&d=mm&r=g) Maureen Knorr I’m Maureen, and I have epilepsy. You’re probably reading this because either you have epilepsy, or you love someone that has epilepsy. Whatever sparked your curiosity, I am happy to be sharing my experiences with you. From having seizures in foreign countries to begging pharmacists that don’t speak English for medication, I can definitely say that it's been an interesting journey. Hopefully reading about my ups and downs, and my everyday and not so everyday adventures will inspire you too! Welcome to my life of living well with epilepsy! [See Full Bio](https://livingwellwithepilepsy.com/author/maureen-knorr) [ ](https://livingwellwithepilepsy.com/author/maureen-knorr) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://maureenknorr) **Categories:** International Epilepsy --- ### [IG Live with Jamie Wissinger](https://livingwellwithepilepsy.com/advocacy-awareness/events-initaitives/ig-live-with-jamie-wissinger.html) **Published:** March 30, 2020 **Author:** Jamie Wissinger **Excerpt:** Join my chat with Jamie Wissinger, blogger, podcaster and epilepsy advocate, on 3/30 on Instagram Live at 12pm PT/ 3pm ET / 7pm GMT. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/03/IMG_9225-e1585586988215-300x296.png "IMG_9225 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2020/ig-live/ig-live-with-jamie-wissinger.html/attachment/img_9225)Jamie Wissinger will take a little time away to chat with us today on Instagram Live. Jamie is a blogger, epilepsy advocate, virtual assistant, mom to three beautiful children and now has added podcaster to her schedule! Jamie has generously participated in the Epilepsy Blog Relay in the past. I’m looking forward to having her catch us up on her latest project, [a new podcast called: 1 in 26.](_wp_link_placeholder) 1 in 26 is all about celebrating who we are. Jamie does not believe this disability should define us. #### 1 in 26 This podcast premiered in July 2019, and has shared the stories of 8+ epilepsy warriors. Episodes are released every Friday, with season 2 happening so soon. You can find it on Apple, Spotify, or Google Podcasts. #### IG Live So, whether you are living with epilepsy, a researcher, clinician, or just stuck at home and curious about podcasts, I hope you will join my chat with Jamie Wissinger on 3/30 on Instagram Live at 12pm PT/ 3pm ET / 7pm GMT. You can find the chat at @livingwellwithepilepsy. Don’t miss it! ![author avatar](https://secure.gravatar.com/avatar/43219f821cdcb707861d4c5d783f913a94991267fb94c4c92bbab48ec46b45b8?s=300&d=mm&r=g) Jamie Wissinger [See Full Bio](https://livingwellwithepilepsy.com/author/jmes717) [ ](https://livingwellwithepilepsy.com/author/jmes717) **Categories:** Events and Initiatives --- ### [IG Live with Fran Turauskis of SeizeYourAdventure](https://livingwellwithepilepsy.com/advocacy-awareness/events-initaitives/ig-live-with-fran-turauskis-of-seizeyouradventure.html) **Published:** March 31, 2020 **Author:** Jessica K. Smith **Excerpt:** Fran Turauskis of SeizeYourAdventure.com has come up with a great way to bring the outdoors inside during the Coronavirus crisis. Join us on Instagram Live today (3/31) on @livingwellwithepilepsy at 12pm PT/3pm ET/7pm GMT. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/03/7CF797AB-ABB9-414E-AF06-C0DC06EC74CB-300x300.jpg "7CF797AB-ABB9-414E-AF06-C0DC06EC74CB – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/7cf797ab-abb9-414e-af06-c0dc06ec74cb)Fran Turauskis of [SeizeYourAdventure.com](https://www.seizeyouradventure.com/) has come up with a great way to bring the outdoors inside during the [Coronavirus crisis](https://livingwellwithepilepsy.com/coronavirus-updates?aiEnableCheckShortcode=true). She has put together a list of books for you to read that bring the outside, inside. I’m hoping she will share a few when we chat today on Instagram Live today on @livingwellwithepilepsy at 12pm PT/3pm ET/7pm GMT. #### Books that bring the outdoors inside That’s why Fran is drawing on her indoor alter-ego. She has developed a list of books for you to read that bring the outside, inside. According to Fran, “They all show the healing power of nature, with a focus on different mental health and social issues. And they all encourage the mentality of seizing adventure across the whole spectrum – from epic walks to the simplicity of sitting under trees.” #### In case you missed it Don’t miss it! ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Events and Initiatives --- ### [Live with Torie Robinson](https://livingwellwithepilepsy.com/advocacy-awareness/events-initaitives/live-with-torie-robinson.html) **Published:** April 7, 2020 **Author:** Jessica K. Smith **Excerpt:** Meet Torie Robinson, she is the founder of Epilepsy Sparks an organization based in the UK and an international speaker on the topic of epilepsy. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/04/torie-300x300.jpg "torie – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2020/ig-live/live-with-torie-robinson.html/attachment/torie)Torie Robinson Meet [Torie Robinson](https://torierobinson.com/), she is the founder of [Epilepsy Sparks](https://www.epilepsysparks.com/) an organization based in the UK and an international speaker on the topic of epilepsy. Torie will join me today, April 7, as my guest on [Instagram Live](https://www.instagram.com/livingwellwithepilepsy/). We will chat about raising awareness by sharing stories. Torie is a great resource not just to those in the UK but to anyone with epilepsy around the world. She is connected in the scientific and epilepsy patient communities. #### Interview with Sky News I’ve included a recent interview she did with [Sky News](https://news.sky.com/) on [International Epilepsy Day](https://internationalepilepsyday.org/) below: #### Join us I hope you will join our chat today April 7, on Instagram Live @livingwellwithepilepsy at 12pm PT/3pm ET/8pm GMT. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Events and Initiatives --- ### [Live with Craig Chambliss discussing the importance of rescue medications](https://livingwellwithepilepsy.com/advocacy-awareness/events-initaitives/live-with-craig-chambliss-discussing-the-importance-of-rescue-medications.html) **Published:** April 15, 2020 **Author:** Jessica K. Smith **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/04/Chambliss-Bio-Pic-e1586973206378-300x300.jpg "Chambliss Bio Pic – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2020/ig-live/live-with-craig-chambliss-discussing-the-importance-of-rescue-medications.html/attachment/chambliss-bio-pic)Craig Chambliss Meet [Craig Chambliss, CEO and Co-Founder of Neurelis, Inc](https://www.neurelis.com/about-neurelis/leadership). It has been a big year in rescue medications thanks to decades of work by Chambliss and his team. In January 2020 Neurelis learned their product, VALTOCO, a diazepam nasal spray, was approved by the FDA, and in March of 2020 they announced it was commercially available. Craig will join me today, April 15, at 3pm ET as my guest on [Instagram Live](https://www.instagram.com/livingwellwithepilepsy/). We will chat about the importance of rescue medications now and moving forward. #### A message to the epilepsy community from Craig Chambliss *In the midst of the uncertainty of the COVID-19 pandemic it is important for us to be grounded in something bigger than ourselves. We see it in everything you do for the epilepsy community and we are thankful to be a part of this journey. Neurelis was founded to solve the unmet needs in epilepsy that have persisted for far too long. We are more focused than ever on addressing those needs. The health and wellness of the community is at the forefront of everything we do at Neurelis. It truly is our passion and, during this time of uncertainty, I want to assure you that Neurelis is doing everything we can to ensure patients have access to necessary rescue medication.* *We will continue to do our part both now and in the calmer waters of the future. With this in mind, we have taken steps to ensure that VALTOCO® (diazepam nasal spray) CIV and related information on managing seizure cluster emergencies will be available for anyone who needs it. We have created the appropriate back up sites with our suppliers and distribution partners to ensure there will be no disruption to VALTOCO supply. As part of these efforts, Neurelis is utilizing Maxor Pharmacy as our partner to fulfill prescriptions for VALTOCO. This approach means there is no need to go to a potentially congested retail pharmacy to have a prescription filled for VALTOCO. Once a prescription has been written and sent in by the healthcare provider to Maxor, VALTOCO gets delivered right to the patient’s doorstep, for no additional cost, by UPS — generally within 48 hours after insurance is submitted and processed.* *Please be assured that, during these financially challenging times, Neurelis is also offering copay assistance and a patient assistance program for eligible patients. For more information on these programs and the materials available for patients and caregivers, please visit [http://www.valtoco.com](about:blank). Also see the Important Safety Information for VALTOCO at the end of this note.* *Please know that the Neurelis team is at your disposal. Your efforts have always been a tremendous source of inspiration for me. From my earliest conversations with the amazing doctors, nurses and advocacy staff almost two decades ago, I was irreversibly impressed with the passion and dedication shown in managing the challenges of epilepsy. There was a level of compassion and engagement with patients and caregivers that I had not seen previously. It was truly compelling. It has carried us through the early days of advocating for seizure rescue plans with the backdrop of 9/11/2001 and challenges in development funding in the economic downturn of 2008/09. It will carry us through this, as well.* *It is my prayer that this pandemic will bring us closer as a community. It is a time of reflection and it gives me this chance to personally tell you how important your work is, how important and blessed we are to be working with you, and that you can count on us for support.* *Finally, I want to thank you for supporting us. It’s been an incredible journey to bring VALTOCO to the epilepsy community and your support of our efforts means more to me than you can ever imagine. We will get through these times together and be stronger as a result.* *My hope is that this note finds you, your loved ones, colleagues, and community at-large in good health and spirits.* --- #### What is VALTOCO® (diazepam nasal spray)? - VALTOCO is a prescription medicine used for the short-term treatment of seizure clusters (also known as “acute repetitive seizures”) in patients 6 years of age and older. - **VALTOCO is a federal controlled substance (CIV) because it can be abused or lead to dependence.** Keep VALTOCO in a safe place to prevent misuse and abuse. Selling or giving away VALTOCO may harm others and is against the law. Tell your healthcare provider if you have abused or been dependent on alcohol, prescription drugs, or street drugs. - It is not known if VALTOCO is safe and effective in children under 6 years of age. #### Important Safety Information you should know about VALTOCO® (diazepam nasal spray), CIV #### What is the most important information I should know about VALTOCO? - **VALTOCO is a benzodiazepine medicine. Taking benzodiazepines with opioid medicines, alcohol, or other central nervous system depressants (including street drugs) can cause severe drowsiness, breathing problems (respiratory depression), coma, and death.** - **VALTOCO can make you sleepy or dizzy and can slow your thinking and your motor skills.** Do not drive, operate heavy machinery, or do other dangerous activities until you know how VALTOCO affects you. - **Like other antiepileptic drugs, VALTOCO may cause suicidal thoughts or actions in a very small number of people, about 1 in 500**. Call a healthcare provider right away if you have any of these symptoms, especially if they are new, worse, or worry you: • Thoughts about suicide or dying• Trouble sleeping (insomnia)• Feeling agitated or restless• An extreme increase in activity and talking (mania)• Acting aggressive, being angry, or violent• New or worse anxiety• Attempts to commit suicide• New or worse irritability• Panic attacks• Other unusual changes in behavior or mood• Acting on dangerous impulses• New or worse depression #### **How can I watch for early symptoms of suicidal thoughts or actions?** - Pay attention to any changes, especially sudden changes in mood, behaviors, thoughts, or feelings. - Keep all follow-up visits with your healthcare provider as scheduled. - Call your healthcare provider between visits as needed, especially if you are worried about symptoms. Suicidal thoughts or actions can be caused by things other than medicines. If you have suicidal thoughts or actions, your healthcare provider may check for other causes. #### Do not use VALTOCO if you: - Are allergic to diazepam. - Have an eye problem called acute narrow-angle glaucoma. #### **What should I tell my doctor before taking VALTOCO?** **Before using VALTOCO, tell your healthcare provider about all of your medical conditions, including if you:** - Have asthma, emphysema, bronchitis, chronic obstructive pulmonary disease, or other breathing problems. - Have a history of alcohol or drug abuse. - Have a history of depression, mood problems, or suicidal thoughts or behavior. - Have liver or kidney problems - Are pregnant or plan to become pregnant. VALTOCO may harm your unborn baby. - Are breastfeeding or plan to breastfeed. VALTOCO passes into your breast milk and may harm your baby. Talk to your healthcare provider about the best way to feed your baby if you use VALTOCO. **Tell your healthcare provider about all the medicines you take**, including prescription and over-the-counter medicines, vitamins, and herbal supplements. #### How should I use VALTOCO? - **Read the Instructions for Use for detailed information about the right way to use VALTOCO.** - Use VALTOCO exactly as prescribed by the healthcare provider. - Your healthcare provider will tell you: o What seizure clusters are o Exactly how much VALTOCO to give o When to give VALTOCO o How to give VALTOCO o What to do after you give VALTOCO if the seizures do not stop or there is a change in breathing, behavior, or condition that worries you - You should carry VALTOCO with you in case you need to control your seizure clusters. - Family members, care providers, and other people who may have to give VALTOCO should know where you keep your VALTOCO and how to give VALTOCO before a seizure cluster happens. - VALTOCO is given in the nose (nasal) only. - VALTOCO comes ready to use. - Each VALTOCO only sprays 1 time and cannot be reused. **Do not** test or prime the nasal spray before use. - Each dose of VALTOCO is provided in an individual pack. Use all of the medicine in 1 pack for a complete dose. #### What should I do after I give VALTOCO? - Stay with the person after you give VALTOCO and watch them closely. - Keep or move the person onto their side. - Make a note of the time VALTOCO was given. - Call for emergency help if any of the following happen: o Seizure behavior is different than other seizures the person has had. o You are alarmed by how often the seizures happen, by how severe the seizure is, by how long the seizure lasts, or by the color or breathing of the person. - Throw away (discard) the used VALTOCO. If needed, a second dose may be given at least 4 hours after the first dose, using a new pack of VALTOCO. Do not give more than 2 doses of VALTOCO to treat a seizure cluster. A second dose should **not** be given if there is concern about the person’s breathing, they need help with their breathing, or have extreme drowsiness. Do not use VALTOCO for more than 1 seizure cluster episode every 5 days. Do not use VALTOCO for more than 5 seizure cluster episodes in 1 month. #### **What should I avoid while using VALTOCO?** - Do not drink alcohol or take opioid medicines that make you sleepy or dizzy while taking VALTOCO until you talk to your healthcare provider. When taken with alcohol or medicines that can cause sleepiness or dizziness, VALTOCO may make your sleepiness or dizziness worse. #### What are the most common side effects of VALTOCO? The most common side effects of VALTOCO include: • Feeling sleepy or drowsy• Headache• Nose discomfortThese are not all of the possible side effects of VALTOCO. Call your healthcare provider for medical advice about side effects. You may report side effects to Neurelis, Inc. at 1-866-696-3873 or to FDA at 1‑800-FDA-1088. **Please see full** [**Prescribing Information and Medication Guide**](https://www.valtoco.com/sites/default/files/VALTOCO_Prescribing_Information.pdf) **for additional important safety information.** ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Events and Initiatives --- ### [Epilepsy Blog Relay: Living Well With Epilepsy is nominated for a Her Abilities Award](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/nominated-for-a-her-abilities-award.html) **Published:** November 15, 2018 **Author:** Jessica K. Smith **Excerpt:** Jessica Keenan Smith, founder of Living Well With Epilepsy, has been nominated for a Her Abilities Award, a global award honoring women with disabilities. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/10/logo.png "logo – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/nominated-for-a-her-abilities-award.html/attachment/logo-3)***This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from November 1 to November 30, 2018. Follow along!*** I am thrilled to share with the Living Well With Epilepsy community that because of my work with the site, I have been nominated for the [Her Abilities Award 2018.](https://www.her-abilities-award.org/about) #### The Her Abilities Award Her Abilities is the first global award honoring the achievements of women with disabilities. The international disability and development organization [Light for the World](https://www.light-for-the-world.org/) is the founder of the award. With this award, the organization aims to honor women with disabilities who achieved greatness in their life and field of work. There were 158 women nominated from all continents and from 52 countries all over the world – among them Switzerland, Germany, Belgium, Mozambique, Burkina Faso, Austria, UK, Bolivia, Ethiopia, Vietnam, India, Norway, Cameroon, Kenya and the United States. [The jury](https://www.her-abilities-award.org/jury) is in the process of reviewing more than 300 nominations. The winners will be announced on December 3rd. You can learn more at [her-abilities-award.org](https://www.her-abilities-award.org/) and on their Social Media Channels. #### More in 2019 The organization is are proud to announce that Her Abilities will continue in 2019. Light for the World encourages everyone to take part again! --- **NEXT UP:** Be sure to check out the next post by Natasha at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/start-here) **TWITTER CHAT:** Save the date for the #LivingWellChat on December 6 at 12 Noon ET. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/11/EBR-Nov18-150x150.png "EBR - Nov18 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/november-2018-participants)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our generous sponsors and partners! [Become a Sponsor ](https://livingwellwithepilepsy.com/2018-19-media-kit-_all) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** International Epilepsy **Tags:** Her Abilities --- ### [International Epilepsy Day 2019](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/international-epilepsy-day-2019.html) **Published:** February 11, 2019 **Author:** Jessica K. Smith **Content:** In honor of [International Epilepsy Day 2019](https://internationalepilepsyday.org/), we thought it would be fun to round up a few of our favorite stories that have come to Living Well from around the world. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2014/10/DSC_0298-e1412642550185-364x243.jpg)](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/bhutan-epilepsy-project.html "The Bhutan Epilepsy Project") [#### The Bhutan Epilepsy Project](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/bhutan-epilepsy-project.html) | | | Farrah Mateen, MD, PhD, of Mass General Hospital and Harvard Medical School is taking mobile EEG tech to the Himalayas with the Bhutan Epilepsy Project.… [Read More](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/bhutan-epilepsy-project.html) [Bhutan Epilepsy Project](https://livingwellwithepilepsy.com/tag/bhutan-epilepsy-project), [Global Epilepsy](https://livingwellwithepilepsy.com/tag/global-epilepsy), [Global Epilepsy Care](https://livingwellwithepilepsy.com/tag/globalepilepsy), [Global Health](https://livingwellwithepilepsy.com/tag/global-health) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/04/IMG_2614-364x364.jpg)](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/bhutan-epilepsy-project-interview-with-researcher-erica-mckenzie.html "Bhutan Epilepsy Project: Interview with researcher Erica McKenzie") [#### Bhutan Epilepsy Project: Interview with researcher Erica McKenzie](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/bhutan-epilepsy-project-interview-with-researcher-erica-mckenzie.html) | | | I recently had the opportunity to interview Erica McKenzie, a Bhutan Epilepsy Project researcher, who works with Farrah Mateen MD, PhD.… [Read More](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/bhutan-epilepsy-project-interview-with-researcher-erica-mckenzie.html) [Bhutan Epilepsy Project](https://livingwellwithepilepsy.com/tag/bhutan-epilepsy-project), [Global Epilepsy](https://livingwellwithepilepsy.com/tag/global-epilepsy), [Global Epilepsy Care](https://livingwellwithepilepsy.com/tag/globalepilepsy), [Global Health](https://livingwellwithepilepsy.com/tag/global-health) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/03/tolu-e1677866425436-364x453.webp)](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/global-epilepsy-training.html "Epilepsy Blog Relay: Global Epilepsy Training") [#### Epilepsy Blog Relay: Global Epilepsy Training](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/global-epilepsy-training.html) | | | This year I had the chance to present as part of the virtual global epilepsy training. EAMC, which supports doctors and nurses in Low to Middle Income Countries (LMICs) looking to improve their patients’ outcomes.… [Read More](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/global-epilepsy-training.html) [\#epilepsytraining](https://livingwellwithepilepsy.com/tag/epilepsytraining), [Global Epilepsy Care](https://livingwellwithepilepsy.com/tag/globalepilepsy) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/10/image1-364x273.jpeg)](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/from-ireland-to-australia-with-refractory-epilepsy.html "International Epilepsy Day: from Ireland to Australia with refractory epilepsy") [#### International Epilepsy Day: from Ireland to Australia with refractory epilepsy](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/from-ireland-to-australia-with-refractory-epilepsy.html) | | | Maria Elizabeth invites us along on her twenty-one year journey with refractory epilepsy as she travels the world and completes her doctorate.… [Read More](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/from-ireland-to-australia-with-refractory-epilepsy.html) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/03/27332499_2009974339256103_3442678694767666891_n-364x455.jpg)](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/emily-on-finding-comfort-when-seizures-return.html "Epilepsy Blog Relay: Emily on finding comfort when seizures return") [#### Epilepsy Blog Relay: Emily on finding comfort when seizures return](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/emily-on-finding-comfort-when-seizures-return.html) | | | This post is part of the Epilepsy Blog Relay™ which will run from March 1 to March 31, 2018. Follow along! Hi Living Well family, I feel like it’s been a while. I’m OK though. A couple of weeks ago, I sadly ended up in hospital after suffering a seizure that involved … [Read More](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/emily-on-finding-comfort-when-seizures-return.html) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/12/25408884_1511809806.8158-364x243.jpg)](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/educate-one-girl.html "Educate one girl and you can change a whole community") [#### Educate one girl and you can change a whole community](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/educate-one-girl.html) | | | As my regular readers know, I have traveled to Tanzania over the past few years. On one of these trips in 2015, I met a lovely young lady named Eppy. Since we met, my family has sponsored her last two years of education.… [Read More](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/educate-one-girl.html) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/04/Richard-1-e1527111462715-364x378.jpg)](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/epilepsy-blog-relay-life-with-epilepsy-in-kenya.html "Epilepsy Blog Relay: Life with Epilepsy in Kenya") [#### Epilepsy Blog Relay: Life with Epilepsy in Kenya](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/epilepsy-blog-relay-life-with-epilepsy-in-kenya.html) | | | This post is part of the Epilepsy Blog Relay™, which will run from June 1 to June 30, 2018. Follow along! Rich’s Story Symptoms of having Epilepsy were evident but not confirmed by a medical practitioner since 2002. Due to lack of epilepsy information I lived with it until the episodes exceeded. … [Read More](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/epilepsy-blog-relay-life-with-epilepsy-in-kenya.html) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/02/TwitterProfile-364x364.png)](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/international-epilepsy-day-2019.html "International Epilepsy Day 2019") [#### International Epilepsy Day 2019](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/international-epilepsy-day-2019.html) | | | In honor of International Epilepsy Day 2019, we thought it would be fun to round up a few of our favorite stories that have come to Living Well from around the world. Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community … [Read More](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/international-epilepsy-day-2019.html) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/06/Emily-Dan-364x441.jpg)](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/smart-monitoring-epilepsy-and-seizure-alert-systems.html "Epilepsy Blog Relay: Emily on Smart Monitoring her epilepsy and seizure alert systems") [#### Epilepsy Blog Relay: Emily on Smart Monitoring her epilepsy and seizure alert systems](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/smart-monitoring-epilepsy-and-seizure-alert-systems.html) | | | This post is part of the Epilepsy Blog Relay™ which will run from June 1 through to the 30th. Follow along and add comments to posts that inspire you! Smart Monitoring my Epilepsy Let’s get real, having a condition can make you feel bad, physically or emotionally, and sometimes both. I take three lots … [Read More](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/smart-monitoring-epilepsy-and-seizure-alert-systems.html) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/03/EEG_LWWE-364x243.jpg)](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/epilepsy-blog-relay-epilepsy-advancements-in-developing-countries.html "Epilepsy Blog Relay™: Epilepsy advancements in developing countries") [#### Epilepsy Blog Relay™: Epilepsy advancements in developing countries](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/epilepsy-blog-relay-epilepsy-advancements-in-developing-countries.html) | | | Maureen’s Story: I wanted to highlight a few epilepsy advancements I witnessed on my travels in Mahenge, Tanzania. … [Read More](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/epilepsy-blog-relay-epilepsy-advancements-in-developing-countries.html) [Epilepsy Blog Relay](https://livingwellwithepilepsy.com/tag/epilepsy-blog-relay), [Global Epilepsy Care](https://livingwellwithepilepsy.com/tag/globalepilepsy) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/03/IMG_2580-e1489955724217-364x485.jpg)](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/epilepsy-blog-relay-global-health-goes-mobile-thanks-to-new-research.html "Epilepsy Blog Relay™: Dr. Mateen Takes Mobile Technology Global for Epilepsy") [#### Epilepsy Blog Relay™: Dr. Mateen Takes Mobile Technology Global for Epilepsy](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/epilepsy-blog-relay-global-health-goes-mobile-thanks-to-new-research.html) | | | Dr. Mateen’s Story: If you are interested in innovation in Global Health, you may need to hear about the Bhutan Epilepsy Project. … [Read More](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/epilepsy-blog-relay-global-health-goes-mobile-thanks-to-new-research.html) [eeg](https://livingwellwithepilepsy.com/tag/eeg), [Epilepsy Blog Relay](https://livingwellwithepilepsy.com/tag/epilepsy-blog-relay), [global heath](https://livingwellwithepilepsy.com/tag/global-heath), [innovation](https://livingwellwithepilepsy.com/tag/innovation), [technology](https://livingwellwithepilepsy.com/tag/technology) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/04/IMG_80021-364x281.jpg)](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/the-guinea-epilepsy-project.html "The Guinea Epilepsy Project conducts 300 patient visits free of charge") [#### The Guinea Epilepsy Project conducts 300 patient visits free of charge](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/the-guinea-epilepsy-project.html) | | | I recently had the opportunity to speak to Farrah Mateen, MD, PhD, Massachusetts General Hospital/Harvard Medical School, the principal investigator on The Guinea Epilepsy Project. This is the latest in a series of global health projects Dr. Mateen has led, including The Bhutan Epilepsy Project. … [Read More](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/the-guinea-epilepsy-project.html) [Share your story today! ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** International Epilepsy --- ### [Global Epilepsy: Helping Those with Living with Epilepsy in Uganda](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/global-epilepsy-helping-those-with-living-with-epilepsy-in-uganda.html) **Published:** March 18, 2021 **Author:** Guest Contributor **Excerpt:** Gideon Ronie shares an update on his work helping people living with epilepsy in Uganda. He gives insight into how the pandemic has affected the community. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/Screen-Shot-2020-11-14-at-9.40.59-AM-300x268.png "Screen Shot 2020-11-14 at 9.40.59 AM – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/Screen-Shot-2020-11-14-at-9.40.59-AM.png)Epilepsy in Uganda My name is Gideon Ronald Akanyijuka. I am CEO of [Epilepsy Awareness Uganda (EAU).](https://www.epilepsyuganda.com/) EAU is a Non Governmental Organization (NGO) that brings together all persons affected by epilepsy in Uganda. This past year has been so difficult for everyone, but for people living with Epilepsy, it has been even more difficult. Considering there was a total lock down for three months in Uganda, getting medication was even more difficult than usual. And this made the conditions of most people living with Epilepsy that much worse. Having less food or no meals at all proved to be a problem for those people with epilepsy who take medication. We received so many calls from our [epilepsy awareness Uganda](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/raising-epilepsy-awareness-in-uganda.html) family who needed help but we could only reach out to few, due to fewer funds available. #### Gratitude for the Good Times Though the year has been difficult we have had some good times. EAU has received donations of wheelchair to benefit one of our community members who really needed a wheelchair for easy movement. We also received masks and sanitizers for our epilepsy family. Life is about being honest, real, humble, understanding, and being able to reach out and touch the lives of others while holding gratitude in your heart. Thank you to all who have supported EAU in our time of need. Terms and Agreement I agree ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** International Epilepsy --- ### [Epilepsy Blog Relay: Global Epilepsy Training](https://livingwellwithepilepsy.com/advocacy-awareness/international-epilepsy/global-epilepsy-training.html) **Published:** March 4, 2023 **Author:** Jessica K. Smith **Excerpt:** This year I had the chance to present as part of the virtual global epilepsy training. EAMC, which supports doctors and nurses in Low to Middle Income Countries (LMICs) looking to improve their patients’ outcomes. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/03/tolu-e1677866425436-241x300.webp "tolu – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2023/03/tolu-e1677866425436.webp) ## Global Impact This February, I had the honor of presenting as part of the [EPILEPSY ASSESSMENT & MANAGEMENT COURSE (EAMC)](https://www.pretolaghc.net/book-eamc), which is offered by Pretola Health and Consulting and led by its founder, [Tolu Olaniyan, Bsc, LD Nursing, MSc, Epilepsy](https://www.linkedin.com/in/tolu-olaniyan/). I presented alongside other leaders in the patient engagement space such as [Torie Robinson](https://livingwellwithepilepsy.com/2023/aboutepilepsy/epilepsy-research/torie-robinson-of-epilepsy-sparks.html), and [Nina Mago](https://www.linkedin.com/in/nina-mago/?originalSubdomain=ug). ## Free to Participants Thanks to the course sponsors **[ROW Foundation](https://rowglobal.org/) and [TSC Alliance](https://www.tscalliance.org/)**, more than 500 participants of the EAMC will be trained on epilepsy for free. This three-month virtual global epilepsy training supports doctors and nurses in Low to Middle Income Countries (LMICs) looking to stay abreast of latest research in epilepsy management and improve their patients’ outcomes. This fourth edition of the EAMC offers a truly multidisciplinary approach to epilepsy management, featuring specialist sessions on how to assess and manage **Tuberous Sclerosis Complex (TSC)** and **Epilepsy in Children.** ## Meaningful to a Global Audience The course content is highly engaging and tailored to reflect the clinical, cultural, and socio-economic contexts in LMICs. Participants from previous editions of the EAMC have benefited from opportunity to network with other participants and share best practice when caring for people with epilepsy. In fact one participant noted, “it’s a helpful one as a medical doctor to know what I could change in my approach to patients, how important \[it is\] for them to provide even those sensitive information \[such as seizure risks\] and to encourage them to join support groups. And I think clinicians need capacity building in communication skills and psychiatric management.” ## Learn More To learn more about how you can participate in this global epilepsy training course in the future, or how you can support the course visit: ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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icon](data:image/svg+xml;base64,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) ](https://linkedin.com/in/) **Categories:** International Epilepsy **Tags:** #epilepsytraining, Global Epilepsy Care --- ### [Epilepsy Blog Relay: Jewel takes on the realities of living with epilepsy](https://livingwellwithepilepsy.com/aboutepilepsy/newlydiagnosed/jewel-takes-on-the-realities-of-living-with-epilepsy.html) **Published:** November 7, 2018 **Author:** Guest Contributor **Excerpt:** Like many people diagnosed later in life, Jewel had little knowledge of what Epilepsy was, and what life would be like living with it. **Content:** **[![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/11/IMG_2403-300x298.jpg "IMG_2403 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/jewell-on-living-out-loud.html/attachment/img_2403)This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from November 1 to November 30, 2018. Follow along!** #### Jewel’s Story Jewel writes the blog, [Live out Loud](http://liveoutloud4epilepsy.org/), a lifestyle resource for the modern woman and mom. The space Jewel has created is committed to building a community which inspires individuals to live healthier lives while [increasing awareness of epilepsy](https://livingwellwithepilepsy.com/2016/epilepsy-blog-relay/its-who-i-am.html) around the world. She writes, “In 2008, my life drastically changed. I was diagnosed with a seizure disorder. Over the past several years, I have endured several series of EEG’s, EKG’s and MRI’s in an attempt to classify the types of non-epileptic and [epileptic seizures](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/nov-18-ebr-posts/5-tips-for-dealing-with-an-epilepsy-diagnosis.html) I was experiencing. Like many people diagnosed later in life I had little knowledge of what [Epilepsy](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/jun-18-ebr-posts/living-with-side-effects.html) was and an even more limited knowledge about what life would be like [living with it](https://livingwellwithepilepsy.com/about-epilepsy).” --- Related article: **[Newly diagnosed with epilepsy](https://livingwellwithepilepsy.com/2015/aboutus-lwwe/emilys-perspective/new-to-epileptic-seizures.html)** --- #### Excerpt from Be Gentle With Yourself I didn’t realize right away that I wasn’t ok last week. Usually, I’m pretty good at recognizing when I need to rest and unplug. Unfortunately, this time it took my family and friends saying, *“you don’t look so good”* or asking, *“are you sure you’re ok?*” for me to evaluate how I was really feeling. Wasn’t sure if I had a seizure \[I have seizures in my sleep at times\] or if I just wasn’t feeling well.With so much on my mind, it was difficult to identify when I needed a break. I’ve been so focused on pushing through and past what my body could do. I’ve always felt it made me appear strong. But even the strong need to rest!!! [READ MORE ](http://liveoutloud4epilepsy.org) --- **NEXT UP:** Be sure to check out the next post by Jordan at **TWITTER CHAT:** Save the date for the #LivingWellChat on December 6 at 12 Noon ET. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/11/EBR-Nov18-150x150.png "EBR - Nov18 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/november-2018-participants)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our generous sponsors and partners! [Become a Sponsor ](https://livingwellwithepilepsy.com/2018-19-media-kit-_all) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Newly Diagnosed **Tags:** new diagnosis, newly diagnosed --- ### [Epilepsy Awareness Month 2018: What you need to know](https://livingwellwithepilepsy.com/advocacy-awareness/epilepsy-awareness-month-2018-what-you-need-to-know.html) **Published:** October 31, 2018 **Author:** Jessica K. Smith **Excerpt:** November is Epilepsy Awareness Month and it's a great opportunity to get people talking about a disease that affects between 1-3% of the world's population. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/11/EBR-Nov18-300x300.png "EBR - Nov18 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-stories/from-ireland-to-australia-with-refractory-epilepsy.html/attachment/ebr-nov18)November isn’t just for Thanksgiving and Black Friday deals. It also means it’s time for another Epilepsy Awareness Month. National Epilepsy Awareness Month is celebrated during the month of November in the United States. So, it is a great opportunity to get people talking about a disease that [affects between 1% and 3% of the population](https://www.ncbi.nlm.nih.gov/pubmed/12838266). Let’s put those numbers in context: 2% of the world’s population is 150,000,000 people. And, according to [*Handbook of Epilepsy*](https://books.google.com/books?id=gLOv8XZ5u48C&printsec=frontcover#v=onepage&q&f=false), approximately 3% of people can be expected to have epilepsy at some point in their lives. #### Why does this matter to you? You may be surprised to learn that Sudden Unexpected Death in Epilepsy (SUDEP) is a real concern. Or, you may have been personally affected by SUDEP. According to the CDC, [SUDEP refers to deaths in people with epilepsy that are not caused by injury](https://www.cdc.gov/epilepsy/about/sudep/index.htm), drowning, or other known causes. Studies suggest that each year there are about [1.16 cases of SUDEP for every 1,000 people with epilepsy](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4852129/). #### How can you support epilepsy awareness month? **Epilepsy Blog Relay** First off, you can simply start by learning more about epilepsy. No matter how long you have been living with epilepsy, or caring for those with epilepsy, there is always more to learn about the disease. Throughout the month, people around the world share stories on [Living Well With Epilepsy](https://livingwellwithepilepsy.com/start-here) as part of the [November Epilepsy Blog Relay](https://livingwellwithepilepsy.com/epilepsy-blog-relay/november-2018-participants). It is a great way to get 30 different perspectives on this chronic illness that affects so many. **Check out an epilepsy podcast** If you are in the NYC area, join Alisa Kennedy Jones, author of Gotham Girl Interrupted, and Jessica Keenan Smith, founder of [Living Well With Epilepsy](https://livingwellwithepilepsy.com/start-here), as they launch their new podcast, “Fits ‘n Starts,” for a fun, frank discussion about living – and living well – with epilepsy on **Date:** Thursday, November 15, 2018 @ 7:00 pm. **Location:** EPIC Long Island, 1500 Hempstead Turnpike, East Meadow, NY **Support your local organization** Next you can find your local [epilepsy organization](https://www.epilepsy.com/affiliates) and give your time, talent (or treasure!) — it’s up to you. **Read an epilepsy author** Or you could read one of the many personal epilepsy stories that have recently hit the market: [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/10/41OeTqKX-sL-200x300.jpg "41OeTqKX-sL – Living Well With Epilepsy")](https://www.amazon.com/Gotham-Girl-Interrupted-Misadventures-Motherhood-ebook/dp/B079R3GYGY/ref=sr_1_1?s=books&ie=UTF8&qid=1535740673&sr=1-1&keywords=gotham+girl)[PREORDER TODAY](https://www.amazon.com/Gotham-Girl-Interrupted-Misadventures-Motherhood-ebook/dp/B079R3GYGY/ref=sr_1_1?s=books&ie=UTF8&qid=1535740673&sr=1-1&keywords=gotham+girl) **Share your story** Of course Epilepsy Awareness Month is a great opportunity to share your story. [Share your story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Advocacy and Awareness **Tags:** Epilepsy Awareness Month --- ### [Epilepsy Blog Relay: My Grandmother and PCDH19 Epilepsy](https://livingwellwithepilepsy.com/aboutepilepsy/seizure-types-syndromes/rare-epilepsy/pcdh19-epilepsy.html) **Published:** June 19, 2018 **Author:** Guest Contributor **Excerpt:** Francesca's Story: I have a type of epilepsy that was inherited from my mother's mother. My grandmother was born with PCDH19 epilepsy. **Content:** **[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/03/29354882_1933231243657386_2880735534064633423_o-e1527277625401-262x300.jpg "29354882_1933231243657386_2880735534064633423_o – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/29354882_1933231243657386_2880735534064633423_o)This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from June 1 to June 30, 2018. Follow along!** #### Francesca’s Story I have a type of epilepsy that was inherited from my mother’s mother. My grandmother was born with PCDH19 epilepsy. She was lucky enough to grow out of Epilepsy when she turned 21 years old. #### What is PCDH19 Epilepsy? According to the [PCDH19 Alliance](https://www.pcdh19info.org/), PCDH19 Epilepsy is a condition with a wide spectrum of severity in seizures, cognitive delays and other symptoms, which are all caused by a mutation of the [PCDH19 gene](https://ghr.nlm.nih.gov/gene/PCDH19#conditions) on the x chromosome. Males with the mutation, who will be largely unaffected, will pass the mutation onto 100% of their daughters and none of their sons. Women with the mutation have a 50% chance of passing it to their daughters and will pass it to 50% of their sons. Recently, scientists have discovered some unaffected females and are studying to learn what is protecting them from the disorder. Mosaic males are also affected, but so far very few males have been diagnosed. #### Common features of PCDH19 - The most consistent feature of this condition is seizures that come in clusters (seizure clusters) and last for days or weeks at a time and do not respond well to available medications. - It is estimated that about 70% of people with PCDH19 have intellectual disability of varying degrees, ranging from mild to severe. #### Francesca’s family The PCDH19 epilepsy gene skipped my mother and [her siblings](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/jun-18-ebr-posts/epilepsy-blog-relay-one-story-of-a-hard-to-recognize-illness-in-kids.html). When my brother was born he did not inherit Epilepsy but he carried the gene. However, when then my mother had me and my sister, we were both diagnosed with [PCDH19 Epilepsy](http://www.thecutesyndrome.com/pcdh19.html). Unfortunately my sister passed away at the age of 12 years old in her sleep. My mother’s siblings also had kids, both boys and girls, but they did not inherit Epilepsy. #### The next generation When my brother had his 3 daughters they all inherited [PCDH19 epilepsy](https://www.pcdh19info.org/pcdh19-epilepsy) and my brother’s son did not inherit PCDH19 epilepsy. I hope you will take a moment to learn more about PCDH19 and help us raise awareness. [Learn more about PCDH19](https://www.pcdh19info.org/pcdh19-epilepsy) --- **NEXT UP:** Be sure to check out the next post by Dana at . **TWITTER CHAT:** Save the date for the #LivingWellChat on June 30 at 7PM ET. [![epilepsy blog relay](https://livingwellwithepilepsy.com/wp-content/uploads/2018/05/june-2018-social-EBR1-150x150.png "june 2018 social EBR(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-participants/attachment/june-2018-social-ebr1)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our [generous sponsors and partners](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-sponsors-and-partners)! [Participate as a November Blogger ](http://bit.ly/Nov18EBRForm) [Become a November Sponsor ](http://bit.ly/1819EBRMk) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Rare Epilepsy --- ### [Epilepsy Blog Relay: Five tips for adjusting to a medication change](https://livingwellwithepilepsy.com/aboutepilepsy/treatments/adjusting-to-a-medication-change.html) **Published:** June 17, 2018 **Author:** Abby Gustus-Alford **Excerpt:** Five helpful tips for adjusting to a medication change. I spoke with my doctor and we both decided that it was time to increase one of my medicines. **Content:** **This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from June 1 to June 30, 2018. Follow along!** Just this week, I spoke with my doctor and we both decided that it was time to increase one of my medicines. I’ve always been extremely sensitive to medicine, so while I knew I needed it, it was a little hard to take. I knew with even the smallest increase that I was going to have yet another “adjustment period.” This, for me, is the time when my body re-adjusts itself, so to speak. It requires me to get more sleep, for one. This particular medicine tends to give me headaches. So, I’ve had a non-stop dull headache. And, I know, as my body adjusts, those headaches will subside and it will be for the best. It’s better than having auras for sure. So, each day, as I go through this, I’m focusing on five helpful tips from good friends to get me through and I thought I’d share them: **1.** Think of one thing each day that makes you happy. There is always going to be one. For me, one thing (or little person to be exact) that makes me happier than anything is my niece, Caroline. No matter what happens in the day, I can count on that two-year-old to make me laugh! And, thank you to my sister-in-law for constantly sending me pictures of her to cheer me up! **2.** Do one thing each day that makes you happy. Maybe it’s a walk around the block, maybe it’s listening to [your favorite song](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/andrea-prepares-for-a-tour-with-her-band-motion-device.html), maybe it’s having a bowl of your favorite ice cream! Whatever it is, do it! **3.** Don’t be afraid to [ask for help from family](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/thanks-on-fathers-day.html). Your family understands. They just do. Do not be afraid to let them know you need their help. **4.** Call a friend. Sometimes it’s as simple as [calling a friend](https://livingwellwithepilepsy.com/2017/livingwell/tips-to-help-bust-a-bad-mood.html) and talking on the phone that will make you forget about all that’s going on and put that smile back on your face. And, on top of everything, they will be happy to hear from you and have the opportunity to catch up. **5.** Get up and move (if you can)! I know it’s hard when you are completely exhausted and not feeling well. But, start with a walk around the block. You don’t need to go out and [run a marathon](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/epilepsy-blog-relay-how-running-and-a-keto-lifestyle-keeps-seizures-at-bay.html) to give yourself a little boost. A [short walk](https://livingwellwithepilepsy.com/2018/food/5-tips-to-keep-constipation-away.html) will be great for you! As I go through this new adjustment period, those are the [helpful tips](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/jun-18-ebr-posts/living-with-side-effects.html) that I’m “trying” to use daily to keep me going! Hopefully, one or two of them will help you too! --- **NEXT UP:** Be sure to check out the next post by Randi at [sonyasstory.com](http://www.sonyasstory.com/). **TWITTER CHAT:** Save the date for the #LivingWellChat on June 30 at 7PM ET. [![epilepsy blog relay](https://livingwellwithepilepsy.com/wp-content/uploads/2018/05/june-2018-social-EBR1-150x150.png "june 2018 social EBR(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-participants/attachment/june-2018-social-ebr1)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our [generous sponsors and partners](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-sponsors-and-partners)! [Participate as a November Blogger ](http://bit.ly/Nov18EBRForm) [Become a November Sponsor ](http://bit.ly/1819EBRMk) ![author avatar](https://secure.gravatar.com/avatar/fc6da7355dbaf3b5333da396f069a80e1cb0f14ba7b3b3c9d7276454b2c67b50?s=300&d=mm&r=g) Abby Gustus-Alford Abby Gustus Alford was diagnosed with epilepsy at the age of 12 after multiple grand mal seizures over six-mos. She has a BA from Purdue and her Master’s from Northwestern. [See Full Bio](https://livingwellwithepilepsy.com/author/abby) [ ](https://livingwellwithepilepsy.com/author/abby) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://abbyg_alford) **Categories:** Treatments **Tags:** helpful tips --- ### [How Many People are Living with Epilepsy Worldwide?](https://livingwellwithepilepsy.com/aboutepilepsy/how-many-people-are-living-with-epilepsy-worldwide.html) **Published:** September 10, 2024 **Author:** Jessica K. Smith **Content:** ## [![epilepsy worldwide](https://livingwellwithepilepsy.com/wp-content/uploads/2024/09/epilepsy-worldwide-300x300.jpg "epilepsy worldwide – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2024/09/epilepsy-worldwide-scaled.jpg)Epilepsy Worldwide Since I’ve been living with epilepsy for 40 years, and I’ve worked in health advocacy for more than 25, I can confidently say it’s time for the epilepsy community to get it together when it comes to reporting how many people are living and dying as a result of epilepsy worldwide. Looking back over other health advocacy movements, history has proven these movements needed to show consensus on how many people are living and dying from that disease (and for those numbers to be monumental) in order to make headway in the research and advocacy. Why am I bringing this up now you might ask? Well, [its not the first time I’ve mentioned it on the site](https://livingwellwithepilepsy.com/epilepsy-by-the-numbers "Epilepsy by the Numbers"), and I suspect it won’t be the last. But I was recently reminded that the scientific community is still using a more than 20 year old statistic on posters, while also publishing more current statistics. This inconsistency frankly makes me crazy because the epilepsy community has enough trouble without the scientific community getting tangled up in how many people are living and dying as a result of this disease globally. ## Outdated Global Epilepsy Numbers For anyone out there that has not heard me speak on this, I’ll get specific: we need to stop citing the [World Health Organization’s reference that there are “**around 50 million people worldwide living with epilepsy**“](https://www.who.int/news-room/fact-sheets/detail/epilepsy). This number has been on their website [since February 2004](https://web.archive.org/web/20031210111224/http:/www.who.int/inf-fs/en/fact165.html) and has not been updated since. This number is still being referenced in 2024. It is two decades out of date and is massively under counting this disease. They need to update it if they are actually serious about [their resolution passed in 2020](https://apps.who.int/gb/ebwha/pdf_files/WHA73/A73_R10-en.pdf). The other number commonly referenced when we talk about epilepsy worldwide comes from the Epilepsy Foundation. In [2007, the Epilepsy Foundation](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4561391/) updated their epilepsy worldwide statistics to reflect that epilepsy affected 1% of the global population. That’s when the number was updated [to 65 Million](https://www.epilepsy.com/what-is-epilepsy/understanding-seizures/who-gets-epilepsy). This number is still being referenced in 2024 despite the fact that it uses population data from 2007. > **Additionally, this number still does not account for the fact that 80% of the cases occur in low and middle income countries.** ## What are the Latest Numbers for Epilepsy Worldwide? So what are accurate numbers for epilepsy worldwide? A team at the CDC led by Rosemarie Kobau, who I can honestly say cares a great deal about the epilepsy community, published a report in 2021 stating that **[1.1% of the US population is living with active epilepsy](https://pubmed.ncbi.nlm.nih.gov/37031584/)**. > ### **[1.1% of the US population is living with active epilepsy](https://pubmed.ncbi.nlm.nih.gov/37031584/)**. If we apply Dr. Kobau’s prevalence number (1.1%) to **current** world population numbers (8.2 Billion) instead of the population from 2007, using a simple percentage calculation, we know this number should be approximately 90 Million. Honestly, it’s math that even I can do. > ### **1.1% of the world’s current population equals ~ 90 Million**. ## But what about the Other 80% Of course, this still does not account for the fact that [80% of the cases are in low and middle income countries](https://www.who.int/health-topics/epilepsy#tab=tab_1). Let’s take a conservative approach. What would the number of people with epilepsy look like if we said 2% of the world’s population are living with epilepsy (though it’s probably closer to 4% but let’s be conservative). > ### **2% of the world’s current population equals ~ 164 Million**. ## Let’s Try to Stay Current Wouldn’t it be nice if we could get some consensus around a number like 164 Million people living with epilepsy world wide? Or even something closer to accurate which would be 328 Million or 4% of people worldwide are living with epilepsy. Then we might gain a little traction with our efforts. I can’t wait to hear your thoughts ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** About Epilepsy --- ### [How to Find a Neurologist for Epilepsy](https://livingwellwithepilepsy.com/aboutepilepsy/newlydiagnosed/finding-a-great-neurologist-for-epilepsy.html) **Published:** October 10, 2024 **Author:** Jessica K. Smith **Excerpt:** When faced with the problem of how to find a neurologist for epilepsy, the challenge can feel daunting. So, I thought I'd share my process. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/12/Canva-Woman-Using-Laptop-While-Holding-A-Cup-of-Coffee-1024x509.jpg "Close-up view of young freelancer working on her project and drinking hot cocoa – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2022/12/Canva-Woman-Using-Laptop-While-Holding-A-Cup-of-Coffee-scaled.jpg) When faced with the problem of how to find a neurologist for epilepsy, the challenge can feel daunting. Sometimes you just need to do a little homework before you allow any old fool to monkey around with your brain. Really, finding a new neurologist can be the most annoying thing. Well maybe not the most annoying thing. Waking up after a seizure in a conference room full of people–now that’s pretty annoying. Since I’ve managed to get myself on the patient list of some of the leading neurologists in the country, I thought I would share the process I go through every time I have to look for a new neurologist. ***Note:** This article was first published on the site in 2009. I’ve updated it a bit but honestly most of the content remains true today.* ## Find a Neurologist ### Step 1. See if you need a referral Find out whether or not your insurance requires you to have a referral from your primary care physician. If you do, then keep this in mind as you are searching for your new doc. You can ask your primary care who they recommend but they will send you to the same person they send everyone else to, so its good to shop around. Some insurance carriers will allow you to make the appointment without the referral and others will not. Find that out too. ### Step 2. Decide what you want Figure out what you want out of this new doctor. Make a list, even if it’s not on paper. Does this person have to be a man or a woman? Do you want to see the head of the department or the lead researcher (PS. I don’t recommend either of these, neither are focused on patient care)? Would you prefer to see someone in private practice or working in a teaching hospital? Once you have your list of “must have” qualities then move on to the next step. Make sure on that list you include how easy it is to get to the doctor (step 4), whether or not they are in-network for your insurance(step 5), if they are focused on epilepsy (you’d be surprised how often this is overlooked) (step 6), and considerations for any other conditions you are living with. ### Step 3. Check out the Top Docs in your area (optional) [Top Docs USA](http://www.castleconnolly.com) This bit is a little outdated, its also a pay to play element of the game. But it is a good place to start learning about who has a long track record of success in the area. You’ll want to learn more about anyone who has been a Top Doc for a few years running. One year doesn’t cut it. ### Step 4. Find a neurologist close to you Close to you can mean closest to your work or your home or your child’s school–whatever will work for you. Location is important. You may need to visit this doctor often and the office damn well better be convenient. You can find out how convenient it is by getting directions from your location to theirs on [Google Maps](http://maps.google.com/maps). ### Step 5. Make sure insurance will cover your neurologist You also need to determine which neurologist is in your health insurance network. This step assumes that you have health insurance. If you [don’t have health insurance consider applying for aid](https://www.healthcare.gov/see-plans/#/). Prescriptions and doctors visits can be expensive so look into getting support via copay cards too. If you do have health insurance, go to your insurance company’s website. Most sites have a “find a doctor” section. Plug in the name of the neurologist you are hoping to see. The site will show you whether or not the doc is in network or out of network. You want to see an in network doctor to ensure that insurance covers as much as possible of the costs. ### Step 6. Check to see if the neurologist focuses on epilepsy Once you have found a neurologist that is nearby and in network, make sure that person sub-specializes in epilepsy. This is very important. Most neurologists focus on a particular area of study, sometimes it is neurodegenerative disease, sometimes it is movement disorders and sometimes it is epilepsy. If you don’t see any reference to epilepsy in their profile, then they are probably not a good fit for you. ### Step 7. Make an appointment Once you have done all this just call and make an appointment. Depending on where you are the wait might be longer than you want. So have a few names handy. ### Step 8. Cross T’s and Dot I’s Once you’ve made an appointment you may need to go back to your primary care physician to get that referral. Hopefully they just put it in the system and connect it to your record. Be sure to ask them to give you a referral for multiple visits. This seems obvious but it doesn’t always happen. ### Too Much? I know, it seems like too many steps, but I swear it’s worth it. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Newly Diagnosed --- ### [Dravet Syndrome Foundation Spain announces call for Innovative Research Projects in Advanced Therapies](https://livingwellwithepilepsy.com/epilepsy-news-and-research/call-for-innovative-research-projects-in-dravet.html) **Published:** November 5, 2020 **Author:** Guest Contributor **Excerpt:** Thank you to our media partner Dravet Syndrome Foundation Spain. They have shared their call for research projects in both english and spanish. **Content:** *[![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/10/fundaciondravet-300x256.jpg "fundaciondravet – Living Well With Epilepsy")](https://www.dravetfoundation.eu/investigacion/strategy/)Thank you to our media partner Dravet Syndrome Foundation Spain. They have shared their call for research projects below. This call for proposals is available here in English and Spanish thanks to the Foundation.* *For more information on this please contact the foundation directly at * #### ENGLISH VERSION We are pleased to announce you our [**Call for Innovative Research Projects in Advanced Therapies for Dravet Syndrome!**](https://www.dravetfoundation.eu/investigacion/call-for-innovative-research-projects-in-advanced-therapies-for-dravet-syndrome/) **Dravet Syndrome Foundation Spain** was created with the primary goal of removing the barriers that prevent research on Dravet syndrome from advancing, as well as encouraging the search for effective treatments that can mitigate or even cure the disease. Therefore, FSD places a high priority on funding research that has a clear path to genetic understanding, clinical application and/or therapeutic development. **Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy**, is a condition of genetic origin which falls within the pathological family of channelopathies, as approximately 80 percent of affected patients have a **mutation in the *SCN1A* gene which** **encodes a sodium channel (Nav1.1) essential for the proper functioning of the brain**. This syndrome begins in the first year of life, with **seizures** triggered by fever, followed by **drug-resistant epilepsy**. In addition, it causes **serious delays in cognitive, motor and speech development, as well as behavioral problems**. ➡️ Through this call, we seek to promote **fundamental, pre-clinical and clinical research aimed at advanced and innovative therapies**. ➡️ Due to the genetic nature of this disease, **eligible areas of study in this open call include, among others, gene therapy of viral vectors, gene therapy of non-viral vectors, and synthetic biology for the development of disease-modifying molecules.** ➡️ Specifically, the call focuses on **exploratory projects of a preliminary nature and/or which study therapeutic aspects for Dravet syndrome not yet covered**, in order to help scientists lay the foundation for a long-term research strategy. We hope to receive projects of extraordinary quality that ultimately aim to improve the quality of life of people living with Dravet syndrome. We encourage all research groups to send us their proposals! \***The period for submitting projects is NOW OPEN**\* All details about the call, including rules, eligibility criteria, deadlines and the online submission platform can be found at: **** --- **RELATED: [Spotlight on Dravet Syndrome](https://livingwellwithepilepsy.com/2010/epilepsy-news/shining-spotlight-on-dravets-syndrome.html)** --- #### VERSIÓN EN ESPAÑOL ¡Nos complace anunciarles nuestra Convocatoria de Proyectos de Investigación Innovadores en Terapias Avanzadas para el Síndrome de Dravet! La **Fundación Síndrome de Dravet (FSD)** se creó con el principal objetivo de eliminar las barreras que impiden el avance de la investigación sobre el síndrome de Dravet, así como de fomentar la búsqueda de tratamientos eficaces que puedan mitigar o incluso curar la enfermedad. Por ello, FSD da gran prioridad a la financiación de investigaciones que tengan un camino claro hacia la comprensión de la genética, la aplicación clínica y/o el desarrollo terapéutico. **El síndrome de Dravet, también conocido como Epilepsia Mioclónica Severa de la Infancia**, es una condición de origen genético que pertenece a la familia patológica de las canalopatías, ya que aproximadamente el 80 por ciento de los pacientes afectados tienen una **mutación en el gen *SCN1A* que codifica un canal de sodio (Nav1.1) esencial para el buen funcionamiento del cerebro**. Este síndrome comienza en el primer año de vida, con convulsiones desencadenadas por fiebre, seguidas por una epilepsia resistente a los medicamentos. Además, causa serios retrasos en el desarrollo cognitivo, motor y del habla, así como problemas de comportamiento. ➡️ A través de esta convocatoria, buscamos promover la **investigación básica, preclínica y clínica dirigida a terapias avanzadas e innovadoras**. ➡️ Debido a la naturaleza genética de esta enfermedad, **las áreas de estudio elegibles en esta convocatoria abierta incluyen, entre otras, la terapia génica con vectores virales, la terapia génica con vectores no virales, y la biología sintética para el desarrollo de moléculas modificadoras de la enfermedad.** ➡️ Concretamente, la convocatoria se centra en **proyectos exploratorios de carácter preliminar y/o que estudien aspectos terapéuticos del síndrome de Dravet aún no cubiertos**, con el fin de ayudar a los científicos a sentar las bases de una estrategia de investigación a largo plazo. Esperamos recibir proyectos de extraordinaria calidad que, en última instancia, tengan como objetivo mejorar la calidad de vida de las personas que viven con el síndrome de Dravet. ¡Animamos a todos los grupos de investigación a que nos envíen sus propuestas! **\*El período para presentar proyectos está AHORA ABIERTO\*** Todos los detalles sobre la convocatoria, incluyendo las reglas, los criterios de elegibilidad, los plazos y la plataforma de solicitud en línea se pueden encontrar en: **** ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** News and Research **Tags:** Dravet Syndrome, research, spanish translation --- ### [Story behind the HOPE heart](https://livingwellwithepilepsy.com/epilepsy-stories/story-behind-the-hope-heart.html) **Published:** June 3, 2013 **Author:** Jessica K. Smith **Content:** [!["Hope" by Ashley Shaffer](http://livingwellwithepilepsy.com/wp-content/uploads/2013/05/artwork-of-ashley-shaffer-300x235.jpg "artwork of ashley shaffer – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2013/05/artwork-of-ashley-shaffer.jpg)Hope by Ashley ShafferA talented young artist by the name of Ashley Shaffer created “Hope” the beautiful artwork you see here. Ashley has shared her art as part of our [Epilepsy Stigma Awareness Month](http://livingwellwithepilepsy.com/2013/05/june-is-epilepsy-stigma-awareness-month.html). ## Creating Hope Ashley was inspired to create this beautiful multi-media piece titled, “Hope” (2013) and has dedicated the piece to inspire people with epilepsy. “I wanted to show my support for people living with epilepsy using purple, which is the color for Epilepsy Awareness. In creating the piece, I just wanted to pour more heart-soft colors in the symbol because it represents a lot of meanings such as love, support, caring, strong, growth, and everything which is hope and timeless,” said Ashley Shaffer. Ashley is a creative woman who also happens to be deaf. She studied at National Technical Institute for the Deaf, Rochester Institute of Technology, and has been recognized for her artwork by the Dyer Arts Center. To see more of her work visit her page [The Artwork of Ashley Shaffer](https://www.facebook.com/ashleyshaffer.art?fref=ts). And in Ashley’s words, “Believe More, Hope More!” [![Epilepsy Stigma](http://livingwellwithepilepsy.com/wp-content/uploads/2013/05/donate_button-300x168.jpg "Epilepsy Stigma Awareness Month – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/donatetoday)Epilepsy Stigma Awareness Month[![Submit Your Story](http://livingwellwithepilepsy.com/wp-content/uploads/2013/05/Collection+of+glossy+speech+bubbles-e1370034383497-300x217.png "– Living Well With Epilepsy")](http://livingwellwithepilepsy.com/sharing-your-story)Submit Your Story ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Stories --- ### [Epilepsy Blog Relay: Epilepsy art reveals hidden truths](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-art-reveals-hidden-truths.html) **Published:** March 23, 2019 **Author:** Guest Contributor **Excerpt:** After one week of extremely intense seizure activity, Angie looked back at her epilepsy and her art. It seemed her brain unconsciously knew a seizure was coming and her artwork showed it. **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/03/Screen-Shot-2019-02-28-at-5.08.48-PM-300x300.png "Screen Shot 2019-02-28 at 5.08.48 PM – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2019/epilepsy-blog-relay/mar-19-ebr-posts/epilepsy-art-reveals-hidden-truths.html/attachment/screen-shot-2019-02-28-at-5-08-48-pm)This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) ***which will run from March 1 through March 31. Follow along!*** Angie made a commitment with 3 other artists that for one year they would daily produce a self-image using any medium and to email the images to each other. She recalls that the experience was playful, fun, and a wonderful way to connect with friends she had known since art school. Angie has collated her images into a film that documents a year in her life with in her words ‘surprising results.’ #### Angie’s Story I have dealt with epilepsy all my adult life. One of the most frightening elements is the seeming randomness of my seizure activity. My seizures always seem to catch me unawares. This has always felt both dispiriting and disrupting. However, after one week of extremely intense seizure activity, I looked back at my artwork from the two preceding weeks. My brain unconsciously knew a seizure was coming, my images had become increasingly darker, with more brevity and darker tone. The project revealed hidden truths by externalizing the internal. [SACRED](https://vimeo.com/144556648) from [angie stimson](https://vimeo.com/switchbitchery) on [Vimeo](https://vimeo.com). To view more of Angie’s art visit her site at [angelastimson.com](http://www.angelastimson.com/) --- ***NEXT UP:*** Be sure to check out the next post by Christalle at [livingwellwithepilepsy.com ](http://livingwellwithepilepsy.com)for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay posts](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) you may have missed. [Share your story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories **Tags:** artwork, creativity, Epilepsy and art --- ### [Epilepsy Blog Relay: 5 Ways to Incorporate Creativity Into Your Healing](https://livingwellwithepilepsy.com/epilepsy-stories/5-ways-to-incorporate-creativity-into-your-healing.html) **Published:** March 24, 2019 **Author:** Guest Contributor **Excerpt:** Christalle reminds us that art and creativity have been proven to be beneficial for healing. Read her 5 tips to integrate creativity into your healing. **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/01/christalle-bodiford99-300x300.jpg "christalle-bodiford99 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-stories/5-ways-to-incorporate-creativity-into-your-healing.html/attachment/christalle-bodiford99)This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) ***which will run from March 1 through March 31. Follow along!*** #### Christalle’s Story Christalle’s epilepsy story is a tale of surprise, fear, misdiagnosis, and misdirection but one that has taken a positive turn. After a successful career in the fashion industry, she has come to see that her true mission is to work her artistic magic on human hearts—specifically, the hearts of fellow warriors struggling to live out their dreams under the often dark and stormy sky of neurological disability. Frustrated by the negativity dominating many of the “support” groups for epilepsy, Christalle founded her site, [christallepistol.com](http://www.christallepistol.com/), to fulfill a pivotal need among those it impacts: a positive nexus of story-sharing, education, community, and genuine support. #### Excerpt from: #### 5 Ways to Incorporate Creativity Into Healing *When we intuitively create, we embrace vulnerability and begin moving closer to acceptance of our true selves. Acceptance is a huge part of living with epilepsy or chronic illness. Acceptance of our diagnosis, acceptance that we may never be cured, acceptance of our circumstances, acceptance that it’s up to us to make our lives better in small ways to contribute to our overall quality of life.* *Art has been proven to be beneficial for healing. You don’t have to have to be a creative person to be able to reap the benefits of creative exercises that may contribute to your healing. I’m going to share five ways you can easily begin incorporating creativity into your healing practice.* [READ MORE ](http://www.christallepistol.com/) --- ***NEXT UP:*** Be sure to check out the next post by Sierra at [livingwellwithepilepsy.com ](http://livingwellwithepilepsy.com)for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay posts](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) you may have missed. [Share your story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories **Tags:** epilepsy and creativity --- ### [On being resilient when it all seems to be too much](https://livingwellwithepilepsy.com/epilepsy-stories/on-being-resilient-when-it-all-seems-to-be-too-much.html) **Published:** November 22, 2020 **Author:** Guest Contributor **Excerpt:** Amanda encourages readers to remember we are resilient, as we manage the pandemic, seasonal changes and a chronic condition. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/Prove-To-Yourself-rotated.jpg "Prove To Yourself – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/Prove-To-Yourself-rotated.jpg)Amanda’s Story What happens when it’s too much? When all of the things we are experiencing just feel like *too much*? When the unexpected international circumstances combined with the seasonal changes and, oh yes, that medical condition, feel like they more than we can handle? Sometimes it helps to remember just how resilient we actually are. There’s been a lot happening this year. A lot. No question about that. We are getting into winter and in many places, that means an increase in SAD (Seasonal Affective Disorder). It’s colder outside and more rain (or snow). Less sunshine. Month 8 of COVID-19 and the isolation. This is on top of all the things that we experience every day: finances; employment; relationships; friendships. Hobbies that I now have more time for (like [writing](https://grammarly.com/aff_track/cj) and [painting](https://www.discountschoolsupply.com/all-categories/school-supplies/c/school_supply?utm_medium=affiliate&utm_source=cj&utm_campaign=af_aac2020&es=2245300000FA)) suddenly seem like they are becoming an expectation. I start to feel like I *have* to do these things. #### On Running In the course of my day, it’s getting harder to find time to run. When it’s not raining (because I actually really dislike running in the rain, despite living on the coast), it’s also too dark before AND after work for me to run alone. I have to time my lunch breaks perfectly to get outside at all. The weekends are the only time I have the opportunity to spend a few hours [running](https://www.kqzyfj.com/click-7612796-13947370). The reality there is that it becomes less motivating to go out. As much as I want to go, I have to acknowledge that it’s not particularly safe to do trail running in the dark alone. Hence, self-imposed feeling more obligations to hobbies like painting and writing. #### On Eating Well My eating habits are worse than they have ever been. As a result, I just signed up for one of the [meal-delivery services](https://ad.doubleclick.net/ddm/clk/477607884;283986109;g?https://cook.blueapron.com/?&cpncd=7bb7625702&cpnam=84&cpndr=4&cpndram=21&cpnxp=12%2F31%2F2020&style=acq&utm_campaign=flashsale) where they make a meal plan for the whole week and deliver it. It starts next week and I plan to try it for a month. It’s expensive but it will mean the difference between me eating every day and sometimes going a couple days without eating. (I go very infrequently now to the [grocery store](https://thrivemarket.com/landing/partner/cj-d2m)… much less than I even did before). #### On Screen Time Social media, streaming services, video chats. Endless options. I haven’t even owned a television before because prior, I spent more time being active than needing a screen. A couple years ago I bought a cheap laptop just for the purpose of blogging (I’m using it right now). The world is a combination of overstimulation and under-stimulation at the same time as imposing entirely new lifestyles. #### Finding Inspiration The force of external motivation can only move us forward so much. So… what happens when it’s too much? This is the time when we have to make a very pointed effort to inspire ourselves. [**RELATED: Managing Stress With Yoga**](https://livingwellwithepilepsy.com/2020/epilepsy-blog-relay/yoga-and-seizure-control.html) #### On being resilient As many times as we have heard this during the pandemic, we are all in this together. The season changes, well, every year…so it will be different in a few months and the sun will come back. We have a significant medical condition and we are managing to get through all of these circumstances even with that. We did it before and we will continue to do so. Things are “too much”. Too much. Yes, yes they are. So are we. We are much too resilient, much too determined, much too feisty and we haven’t been permanently overloaded by our permanent medical condition. We aren’t going to let cold weather and a pandemic ruin our irrepressible spirit. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories --- ### [Managing Epilepsy When You're in the Middle Place](https://livingwellwithepilepsy.com/epilepsy-stories/managing-epilepsy-when-youre-in-the-middle-place.html) **Published:** March 9, 2021 **Author:** Jessica K. Smith **Excerpt:** I wanted to take a moment to get a little real about what life is like for me trying to manage epilepsy while also being in The Middle Place. **Content:** I had not planned to run my own post during this [epilepsy blog relay.](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) But that’s the thing about the stories we receive at Living Well With Epilepsy, they are surprising and inspiring. Lauren’s [Fake It Til You Make It story](https://livingwellwithepilepsy.com/2021/personal-epilepsy-stories/fake-it-til-you-make-it.html) resonated so much with me that I wanted, no, I needed to take a moment to get a little real about what life is like for me trying to manage epilepsy while also being in what Kelly Corrigan termed, “[The Middle Place](https://amzn.to/3chyBVx).” #### My Middle Place First off, if you haven’t read Kelly Corrigan’s, “[The Middle Place](https://amzn.to/3chyBVx)” I would encourage you to go out and read it now. Because if you are not already facing issues of caring for aging family members while still caring for yourself (and maybe even caring for your own kids) chances are pretty good you will at some point. It’s a great read filled with love and humor that addresses chronic illness and dealing raising children, having your own illness, and managing aging parents, all at the same time.[![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/03/D345B929-7EF6-45FF-A10F-9EE3E0C573FC_1_105_c.jpeg "D345B929-7EF6-45FF-A10F-9EE3E0C573FC_1_105_c – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2021/03/D345B929-7EF6-45FF-A10F-9EE3E0C573FC_1_105_c.jpeg) I mention this because I’m 48, and at the moment I’m deep in the trenches dealing with two very ill and aging parents. My dad is hospitalized with a variety of issues. Let’s just say they’ve been rebuilding his heart since 1982, so he’s surviving on the force of his own will at this point. Meanwhile, my mom has early onset Alzheimer’s, can’t be left alone and her disease is progressing faster than we would like. So, my sisters and I have descended on my parent’s house in Cape Cod, MA to fill in the gaps here. #### My Epilepsy Like most people, I do better managing my chronic illness when I get enough sleep, eat well, get enough exercise and have a regular routine. Let’s just be honest, enough sleep is out the effing window right now. My sisters and I are taking shifts with Mom to ensure someone gets a bit of sleep since her days and nights are flipped. I have to say I am pretty grateful to have such amazing siblings. And as far as a regular routine goes, well I’ve been separated from my husband and daughter to help manage this craziness. So regular routine’s out the window too. #### What Can I Do[![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/03/IMG_0153-scaled-e1615247391902-1024x935.jpeg "IMG_0153 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2021/03/IMG_0153-scaled-e1615247495196.jpeg) I can be honest with myself and with you guys. I can be grateful for the side-splitting laughs I’m having with my sisters. I can be thankful for this time with my mom and dad. I can be grateful for the flexibility my husband and daughter have given to allow this time to care for my parents. This amount of [gratitude](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/practicing-gratitude.html) would normally make me want to roll my eyes. But with so many things out of my control, I feel like it is an important and positive thing for me to concentrate on. #### A Word of Thanks To that end, I might as well close this piece with a few words of thanks. Thank you Lauren for inspiring me to share what is happening in my world. Thank you to everyone sharing their stories during this epilepsy blog relay. Thank you to our sponsors and media partners who make the epilepsy blog relay possible. Thank you to everyone sharing and commenting on social media. Thank you to everyone who is being so patient with me right now. Thank you to my sisters for everything they are doing. Thank you to my cousins for everything they have done to get us to this point. And thank you to my husband and daughter for their patience, love and support. Keep those inspiring stories coming. I need them right now! ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Stories --- ### [Epilepsy Blog Relay: 5 things Cancer taught me about Epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-blog-relay-5-things-cancer-taught-me-about-epilepsy.html) **Published:** June 5, 2022 **Author:** Jessica K. Smith **Excerpt:** 5 things my cancer diagnosis taught me about how to live better with epilepsy. **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/03/IMG_0983-769x1024.jpg "Jess at chemo – Living Well With Epilepsy")Today is National Cancer Survivor Day. And since I’m still kicking, I suppose I qualify as a Cancer Survivor. Some of you may know I was diagnosed with [Stage 3C Ovarian Cancer](https://www.cancer.org/cancer/ovarian-cancer.html) last fall. Since then I’ve had multiple surgeries, and many rounds of chemotherapy. In that time, cancer has taught me a few things about [living with epilepsy](https://livingwellwithepilepsy.com/2022/personal-epilepsy-stories/epilepsy-blog-relay-on-accepting-epilepsy.html "Epilepsy Blog Relay: On Accepting Epilepsy"). So I thought I’d share those little nuggets with you. ## 1. Tell people about your diagnosis When I was diagnosed with cancer, I told my friends, immediate and extended family, neighbors and colleagues at work. As a result, the outpouring of support was immediate and surprising. One weekend my brother-in-law and sister-in-law organized to have more than 20 of their friends come and do a fall clean up in our yard. They stayed for hours and bought mulch, wood, plants and more. Some of these people didn’t even know me. ## 2. Let people help Many of my friends wanted to bring meals. So my best friend stepped up to coordinate all the meal deliveries each week so we wouldn’t be overwhelmed with too much food at one time. One friend continued to provide food long after the rest had stopped. She was a friend of a friend and someone I would never have expected be in my life in this way. I can never repay her for her kindness. ## 3. When people ask tell them how you feel I had a few friends who would call or text regularly. They really wanted to know how I was doing. I didn’t always want to talk about it. And I didn’t always feel great. But they genuinely wanted to know. I know that because when I did tell them, they listened and responded with caring comments and offers of support. ## 4. Get the best care early I was lucky in that my primary care physician had a sense that something was wrong and sent me to the emergency room. I was also lucky that she is in the same health system as an outstanding cancer center. My luck continued when I was assigned an outstanding surgical oncologist who was a good fit for me. Obviously, this is often not the case whether its in cancer or in neurology. However, that’s not to say everything went off without a hitch. When I ran into any hiccups in my care, I was like a dog with a bone. I would call daily until they were so sick of hearing from me that they would just resolve the issue to be rid of me. I would encourage everyone to do the same. The squeaky wheel gets the grease when it comes to medical care. Become the [squeaky wheel](https://livingwellwithepilepsy.com/2022/epilepsy-blog-relay/questioning-side-effects.html "Epilepsy Blog Relay: On the importance of questioning side effects"). ## 5. Self care matters Whether your self care is about managing your mind, body or spirit, or all of the above, do what helps you feel grounded. Since I have completed my surgery and started back on my chemo I have visited with an integral medicine doctor, begun drinking green juice every day, scheduled my first mammogram, and I’m planning lots of time in the sun this summer. Eventually, I will get back to [yoga](https://livingwellwithepilepsy.com/2021/personal-epilepsy-stories/5-ways-epilepsy-is-life-changing-plus-5-tips-to-make-it-easier.html "5 Ways Epilepsy is Life-Changing plus 5 Tips to Make it Easier") when my strength returns but for now I’m practicing my patience and being kind to myself. If you do nothing else, start by being kind to yourself. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Stories --- ### [Researcher Shares Her Own Patient's Perspective](https://livingwellwithepilepsy.com/epilepsy-stories/researcher-shares-her-own-patients-perspective.html) **Published:** April 11, 2023 **Author:** Guest Contributor **Excerpt:** Mia L. van der Kop shares her perspective as both a researcher and a patient in an article published in the highly regarded scientific journal, Epilepsia. Read an excerpt here. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/04/Screen-Shot-2023-04-10-at-2.31.17-PM-1021x1024.png "Screen Shot 2023-04-10 at 2.31.17 PM – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2023/04/Screen-Shot-2023-04-10-at-2.31.17-PM.png)Mia L. van der Kop shares her perspective in the article titled, “The need for an individualized approach to what is considered a clinically significant reduction in seizure frequency: A patient’s perspective” as both a researcher and a patient. Her article was published in the highly regarded scientific journal, Epilepsia. Below you will find an excerpt as well as a link to the full article: ## Excerpt of Patient’s Perspective Article I am a researcher. I have investigated mortality in people with multiple sclerosis (MS), carefully considered the nuances of different definitions of advanced human immunodeficiency virus (HIV), and examined why people with HIV in slum settings drop out of care. While I conducted my research, I did not try to put myself in the shoes of someone living with MS facing an early death from the disease, think about how it would feel to have advanced HIV whether it was defined one way versus another, or imagine being too afraid to go to a clinic for fear of seeing somebody I know who might discover my HIV status. Admittedly, I did not think about the lives of the human beings I was researching; however, there were people’s stories that struck me. There was the time I was poring over patients’ files in an MS clinic to extract data, and I came across a woman whose first realization that something was wrong was when her legs gave out from under her when she was dancing with friends. She was in her 20s. I read her case report more than 15 years ago, and I will not forget it. Another time, research notes revealed that a woman in Kenya was unable to adhere to her antiretroviral therapy because thieves broke into her home and stole her belongings, including her medication. These stories brought the people I was researching to life, but never more so than when I became a patient myself. Six years ago, when I was nearing the end of my doctoral studies, I had a grand mal seizure and woke up in an ambulance en route to the hospital, where my brain cancer diagnosis awaited. A few months later, a craniotomy left me with not only a partially resected tumor, but drug- resistant epilepsy (DRE) as well. The words “drug- resistant epilepsy” do nothing to conjure up the horror of living with a disease in which you are constantly under threat of attack. With less than seconds of notice, I go from being a seemingly normal, healthy person to one who is drooling, whose face contorts and convulses, and who loudly moans and groans uncontrollably. When the surge of electricity finally releases me, I am left exhausted and literally speechless, as my seizures originate in Broca’s area of my brain. Epilepsy affects my well- being far beyond my 1– 2- min seizures. Prodromes last days, with symptoms including nervousness, nightmares, migraines, exhaustion, and a host of other signs that mimic serious mental health disorders, such as obsessive and intrusive thoughts. Then there is postseizure recovery, which entails at least 3 days of painful headaches and extreme fatigue. When DRE landed me on permanent disability, I started to research ways to reduce my seizure frequency. I came across the ketogenic diet,4 which helped somewhat. Then I started a high- intensity exercise program (CrossFit), and completely unexpectedly, it reduced the number of my seizures by 33% over a 6- month period. Having two or three seizures per month compared to four made a profound difference in my life. [READ THE FULL ARTICLE ](https://livingwellwithepilepsy.com/wp-content/uploads/2023/04/Epilepsia-2023-Kop-The-need-for-an-individualized-approach-to-what-is-considered-a-clinically-significant-reduction.pdf) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories **Tags:** drug resistant, epilepsy, minimal clinically important difference, patient outcome assessment, patient outcomes, patient's perspective --- ### [Epilepsy Blog Relay™: Interview with researcher Sarah Collard](https://livingwellwithepilepsy.com/life-with-epilepsy/fitness/epilepsy-blog-relay-interview-with-researcher-sarah-collard.html) **Published:** June 27, 2017 **Author:** Jessica K. Smith **Excerpt:** I recently had the opportunity to interview Sarah Collard, a Fellow at Bournemouth University following the release of her article on Epilepsy & Exercise. **Content:** [![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/05/SCollard-profileshot-e1495995085817-278x300.jpg "SCollard profileshot – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/portfolio/jun-27-sarahcollard/attachment/scollard-profileshot)**This post is part of the [Epilepsy Blog Relay™](http://livingwellwithepilepsy.com/epilepsy-blog-relay) which will run from June 1 to June 30, 2017. Follow along!** I recently had the opportunity to interview Dr. Sarah Collard, CPsychol, a Postdoctoral Research Fellow with the Faculty of Health and Social Sciences at Bournemouth University. Dr. Collard’s [article on Epilepsy and Exercise](http://livingwellwithepilepsy.com/wp-content/uploads/2017/06/Barriers-and-AdaptationsEpilBehav2017.pdf) is now available in the journal, [Epilepsy and Behavior](http://livingwellwithepilepsy.com/wp-content/uploads/2017/06/Barriers-and-AdaptationsEpilBehav2017.pdf). **Living Well With Epilepsy: What is your connection to epilepsy?** **Sarah Collard:** I have it! Diagnosed at 19, I have focal seizures with impaired awareness (complex partial). My seizures have never been controlled and typically I have at least 15 seizures a month. **LWWE: Why epilepsy and exercise?** **SC:** Epilepsy and exercise is of interest to me as it has shaped who I am. Before I was diagnosed, I was a runner. I was quite a good runner and was ecstatic to be offered a place on the track and cross country teams at Villanova University. However, these weird black out moments continued (started when I was 17) and often occurred while running. When diagnosed my freshman year, the new drugs took their toll on my body and I was so frustrated with this new barrier to my previously wonderful life. Eventually, as I would frequently have seizures on runs, my coach had me run only on the track or on the grass. A new fear of running developed and I was left upset and frustrated. I had wonderful support from my family, friends, coach, and teammates, but I was so upset at this huge change in my life. In my constant search to try to get over the fear of running, I couldn’t find any answers to my problems. As luck would have it, I found a book on sport psychology and it felt like I found my calling! I found techniques to help me get over my fear as well as decrease my stress levels. After college, I went on to do a Master’s in sport and exercise psychology in London. Throughout this time, I was constantly looking for research showing people’s experiences exercising with epilepsy, but nothing. There were numbers- 25% are scared, 15% exercise alone, etc. However, I wanted to see someone like me out there! This constant searching eventually led me do research on my own experiences of running with epilepsy and then a PhD on the narratives of people with epilepsy exercising over one year. One of my passions is to present the benefits of exercise for people with epilepsy. By putting people’s experiences out there, it helps others with epilepsy see that they are not alone and perhaps they could learn new ways of exercising safely and confidently. **LWWE: What are some barriers that prevent people with epilepsy from exercising?** **SC:** Common barriers to exercise are the fear of triggering a seizure, no one to exercise with, and incorrect advice from friends, family members, and even neurologists. Medication side effects also caused some to feel too tired to exercise. However, if they managed to exercise, they felt physically and mentally better. **LWWE: Is confidence a barrier?** **SC:** Confidence to exercise alone and at certain times can be a barrier. Confidence to disclose epilepsy to a safety official could also be a barrier and a safety hazard. **LWWE: What has your research shown about people with epilepsy and their psychological and physical well being?** **SC:** People with epilepsy psychologically and physically benefit from exercise. It allows people to recover faster from seizures as well as keep them away! For those who have intense exercise or overheating as a trigger, they still are able to exercise and have learned ways of adapting their exercise routine. **LWWE: Why is it important to have research (data) on this topic?** **SC:** It is important as this provides new insight into why people may not exercise, but also how people are adapting and continuing to exercise. It also shows that stigma can be a barrier to exercise. The lack of knowledge about the condition continues and makes people with epilepsy not want to disclose their epilepsy as well as frustration at being treated differently if they do. **LWWE: Where can we find more of your articles?** SC: My articles can be found in these journals: - Qualitative Research in Sport, Exercise and Health - Psychology of Sport and Exercise - Epilepsy & Behavior **Here are a few titles to look for:** Scarfe (*maiden name*), S. & Marlow, C. (2015). Overcoming the Fear: An Autoethnographic Narrative of a Runner with Epilepsy. *Qualitative Research in Sport, Exercise, and Heath, 75* (5), 688-697. Collard, S.S. & Marlow, C. (2016). “It’s such a vicious cycle”: Narrative accounts of the sportsperson with epilepsy. *Psychology of Sport and Exercise, 24*, 56-64. Collard, S.S. & Marlow, C. (2016). The psychosocial impact of exercising with epilepsy: A narrative analysis. *Epilepsy and Behavior*, *61*, 199-205. Collard, S.S & Ellis-Hill, C. (2017) How do you exercise with epilepsy? Insights into the barriers and adaptations to successfully exercise with epilepsy. *Epilepsy & Behavior, 70,* 66-71. **LWWE: How do you hope to take this research to the next level?** **SC:** I am aiming to develop this further by making a more personal impact through health development programmes and promotion of the benefits of exercise. Also, I would like to decrease stigma for people with epilepsy, particularly within a sport and exercise setting. **Learn More** Thank you to Dr. Collard for taking the time to speak with Living Well With Epilepsy. I encourage you to read Dr. Collard’s [article on Epilepsy and Exercise](http://livingwellwithepilepsy.com/wp-content/uploads/2017/06/Barriers-and-AdaptationsEpilBehav2017.pdf). ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Fitness **Tags:** Epilepsy Blog Relay, Fitness, Interview --- ### [Philly Area Epilepsy Advocates: Don't Miss Mardi Gras](https://livingwellwithepilepsy.com/advocacy-awareness/events-initaitives/mardigras2013.html) **Published:** February 7, 2013 **Author:** Jessica K. Smith **Content:** [![](http://livingwellwithepilepsy.com/wp-content/uploads/2013/02/EFEPA-Mardi-Gras-2012-150x150.png "EFEPA Mardi Gras 2012 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2013/02/mardigras2013.html/efepa-mardi-gras-2012)Each year the [Epilepsy Foundation of Eastern Pennsylvania](http://www.efepa.org/special-events/mardi-gras-gala/) puts on a fantastic Gala with a Mardi Gras theme. This year the event will be held on Friday, February 8, 2013 at the [Crystal Tea Room](http://finleycatering.com/locations/crystal-tea-room) in Philadelphia. The festivities, will begin with a cocktail reception at 7 pm, followed by a 3-course creole style dinner and dancing. The event is a black-tie fundraiser with a New Orleans flair including beads, masks and great music by Tribeca Grand. The event benefits the EFEPA’s free programs and services. [![](http://livingwellwithepilepsy.com/wp-content/uploads/2013/02/20120210_MardiGras_433-150x150.jpg "20120210_MardiGras_433 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2013/02/mardigras2013.html/20120210_mardigras_433)Each year EFEPA honors one person as the King or Queen of the event. This years’ honoree is **Jim Connolly**, former President and CEO of Aeras. Mr. Connolly has held many positions in the pharmaceutical industry including EVP and GM of Wyeth Vaccines; and President and Managing Director of Wyeth Canada. Mr. Connolly has a personal connection to the cause and along with his family, he has become a major epilepsy advocate. This year, the EFEPA will also be recognizing epilepsy advocates with several awards. The *Charley and Peggy Roach Founders Award* will go to **Madeleine** **Keehn**, for her longtime commitment and volunteerism to the Foundation. We will also be awarding the *Eric Burton Osberg Award* to **Dr. Joyce Liporace**, who has spent years as an epileptologist and is the Director of Women’s Health & Epilepsy Programs and Riddle Hospital. In conjunction with the 6th Annual Mardi Gras Gala, the Epilepsy Foundation Eastern PA will be hosting a **Young Professionals Mardi Gras Gala** for ages of 21-30 from 9pm – 12a. Reduced ticket price includes open bar, live music, dancing, and small bites! There will also be a great Silent Auction with some great prizes including a trip to Vegas. [**To purchase tickets**](https://www.kintera.org/AutoGen/Register/Register.asp?ievent=1054748&en=ijJXL0OEIiLQI0ONIcJKJ4NSIsK5KgNRIfJUKeMPKhJUJ4PQJxF) [**To view photos**](http://jonathanmeter.smugmug.com/Epilepsy-Foundation/Mardi-Gras-Gala-2012/21467271_z68m8H#!i=1710983249&k=3G2KJdr) If you have questions please don’t hesitate to contact Julia Greenberger at (215) 629-5003 x107 or . ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Events and Initiatives --- ### [Rock out to raise epilepsy awareness March 22-24](https://livingwellwithepilepsy.com/advocacy-awareness/events-initaitives/rock-out-to-raise-epilepsy-awareness-march-22-24.html) **Published:** March 6, 2013 **Author:** Jessica K. Smith **Content:** [![Paint the Pony Purple_ EFNJ](http://livingwellwithepilepsy.com/wp-content/uploads/2013/03/Paint-the-Pony-Purple_-EFNJ-150x150.png "Paint the Pony Purple_ EFNJ – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2013/03/Paint-the-Pony-Purple_-EFNJ.png)On March 24, 2013, in honor of Purple Day, the Epilepsy Foundation of New Jersey (EFNJ) will host the 2nd Annual Paint the Pony Purple benefit concert at The Stone Pony. The concert lineup includes world renowned rock guitarist, [Gary Hoey](http://garyhoey.com/); NJ’s beloved cover band, [Almost Easy](http://www.almosteasyband.com/); and last year’s crowd favorite, [The RockNRoll Chorus](http://rocknrollchorus.com/) and more. This all-ages event will raise necessary funds to continue the agency’s programs and services that spread knowledge and awareness of [epilepsy](http://livingwellwithepilepsy.com/what-is-epilepsy) and improve the quality of life of those living with the condition in New Jersey. As purple is the designated color for [epilepsy awareness](http://livingwellwithepilepsy.com/speak-out), the venue will offer a special purple-colored draft beer. The event will run from 12:30 p.m. to 5:00 p.m. Tickets may be purchased for $20 at [www.purple.efnj.com ](http://www.efnj.com/content/services/purplepony.php)or via telephone at (732) 528-4382. Event Details: ***2nd Annual*** **Paint the Pony Purple** Benefit Concert for Epilepsy Awareness at the legendary Stone Pony! **DATE:** Sunday, March 24th **TIME:** 12:30 p.m. – 5:00 p.m. **LOCATION:** The Stone Pony, Asbury Park **TICKETS:** $20 each To purchase tickets, please contact the Epilepsy Foundation of New Jersey Ph: [(732) 528-4382 ](tel:%28732%29%20528-4382)or get your tickets online at [www.purple.efnj.com](http://www.purple.efnj.com)*All proceeds will go directly to the Epilepsy Foundation of New Jersey’s programs and services for people in New Jersey living with epilepsy.* **[![50logo copy](http://livingwellwithepilepsy.com/wp-content/uploads/2013/03/50logo-copy-300x157.jpg "50logo copy – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2013/03/50logo-copy.jpg)50 Concerts/50 States** The Purple the Pony benefit concert is part of a larger initiative, called [50 Concerts/50 States](http://www.candlelightconcert.org/50.asp). If you haven’t heard about this you NEED to check it out. Eric Miller, who spearheaded the initiative, started Candlelight Concerts following the loss of his beloved wife [Carolina Barcelos Carneiro de Oliveira Miller](http://www.candlelightconcert.org/carolina.asp) to [SUDEP](http://livingwellwithepilepsy.com/sudep). Eric is definitely one to watch as epilepsy awareness begins to get traction. If you are not already planning to attend a concert on the weekend of [March 22-24](http://www.candlelightconcert.org/50.asp), then you should check out the lineup. There is something for everyone all over the US. Other partners in this ambitious endeavor include Citizens United for Research in Epilepsy (CURE), Team Epilepsy and the Doose Syndrome Epilepsy Alliance. For more information on this project, please visit [www.candlelightconcert.org/50.asp](http://www.candlelightconcert.org/50.asp). ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Events and Initiatives **Tags:** Epilepsy Awareness, Purple Day --- ### [Win your own Les Paul Guitar on March 24](https://livingwellwithepilepsy.com/advocacy-awareness/events-initaitives/win-your-own-les-paul-guitar-on-march-24.html) **Published:** March 20, 2013 **Author:** Jessica K. Smith **Content:** [![purple pony](http://livingwellwithepilepsy.com/wp-content/uploads/2013/03/purple-pony.jpg "Epilepsy Foundation of New Jersey event – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2013/03/purple-pony.jpg)On March 24, be sure to swing by the legendary Stone Pony located in Asbury Park, NJ. You won’t want to miss the Second Annual Paint the Pony Purple concert to benefit epilepsy awareness. ## Event Updates The team at the Epilepsy Foundation of New Jersey just let me know that a few amazing items have been added to the auction, set to be held during the event. They include: guitars signed by Willie Nelson, Steven Tyler of Aerosmith, and Vince Martel of Vanilla Fudge, rare posters of The Beatles and The Rolling Stones, and a LES PAUL GUITAR! ## Benefit Epilepsy Foundation of NJ All proceeds will go directly to the Epilepsy Foundation of New Jersey’s programs and services for people in New Jersey living with epilepsy. To purchase tickets, please contact the Epilepsy Foundation of New Jersey: **[Purchase Tickets](http://www.efnj.com/content/services/purplepony.php)** ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Events and Initiatives --- ### [Local Events: Glow Walk Run for Epilepsy Foundation NJ](https://livingwellwithepilepsy.com/advocacy-awareness/events-initaitives/local-events-glow-walk-run-for-epilepsy-foundation-nj.html) **Published:** October 13, 2015 **Author:** Jessica K. Smith **Content:** [![EFNJ GWR](http://livingwellwithepilepsy.com/wp-content/uploads/2015/10/EFNJ-GWR-e1444590537930.png "EFNJ GWR – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2015/initaitives/epilepsy-events/local-events-glow-walk-run-for-epilepsy-foundation-nj.html/attachment/efnj-gwr) #### What Join the Epilepsy Foundation NJ as they raise awareness and dollars to provide education, recreation, and support to individuals living with [epilepsy](http://livingwellwithepilepsy.com/epilepsy-101) in New Jersey. #### Where/When 5K & Family Fun Walk Sunday, October 25, 2015 Liberty State Park Jersey City, NJ #### Family Fun Walk The 2nd Annual Glow Walk will be held in the early evening at 4:00pm on October 25, at Liberty State Park in Jersey City, New Jersey. Participants will receive glow necklaces to help “shine the light on epilepsy” and to light the way. Children and adults are encouraged to wear costumes, as there will be trick or treating at the rest stops along the walk route. Remember to dress to impress, because there is a catwalk costume contest immediately following the Family Fun Walk. #### 5K Run The sanctioned 5k run will be held at 5:45pm, where participants will be treated to a beautiful, panoramic view of the New York City skyline during the final moments of daylight and through the evening hours. In addition to the walk/run, the event will also feature live music, glow in the dark games and activities, informational exhibits and more. All activities will be free to families who register. #### Contests & Entertainment In addition to the walk/run, the event will also feature live music, glow-in-the-dark games and activities, informational exhibits and more. All activities will be free to families who register. #### To Register To register your team or secure your spot in the 5K race, visit [www.glowwalkrun.org](http://familyresourcenetwork.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=538) Upon registering, individual participants and teams will receive personalized fundraising pages to encourage friends and families to support their cause. #### For More Info For questions, contact Andrea Racioppi at 800.336.5843 or . #### About the Epilepsy Foundation of New Jersey (EFNJ) The Epilepsy Foundation of New Jersey, an affiliate of the National Epilepsy Foundation, is a state-wide, non-profit charitable agency dedicated to helping to improve the quality of life for people affected by epilepsy and their loved ones. EFNJ will ensure that people with seizures are able to participate in all life experiences; and will prevent, control and cure [epilepsy](http://livingwellwithepilepsy.com/epilepsy-by-the-numbers) through services, education, advocacy and research. For more information on the Epilepsy Foundation of NJ, visit [www.efnj.com](http://www.efnj.com/). ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Events and Initiatives **Tags:** Events --- ### [Local Events: Art Therapy, a Half-Marathon, and Sharons Ride all for EFMNY](https://livingwellwithepilepsy.com/advocacy-awareness/events-initaitives/local-events-art-therapy-a-half-marathon-and-sharons-ride-all-for-efmny.html) **Published:** November 2, 2015 **Author:** Jessica K. Smith **Content:** [![Print](http://livingwellwithepilepsy.com/wp-content/uploads/2015/10/EF_Metropolitan_New_York-Epilepsy-NYC-300x140.jpg "Print – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2015/initaitives/epilepsy-events/local-events-art-therapy-a-half-marathon-and-sharons-ride-all-for-efmny.html/attachment/print-3) [The Epilepsy Foundation of Metropolitan New York](http://efmny.org) has been at the heart of the NYC epilepsy community for almost fifty years, and is New York City’s only specialized organization combining epilepsy education, awareness, and advocacy with individualized services such as counseling and vocational supports. ***Living Well With Epilepsy is grateful to the Epilepsy Foundation of Metropolitan New York, a [Media Sponsor](http://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-november-2015-sponsors) of the [November 2015 Epilepsy Blog Relay™](http://livingwellwithepilepsy.com/epilepsy-blog-relay). We encourage you to take a minute learn more about a few of EFMNY’s upcoming events below.*** --- ### Studio E Art Therapy for Teens #### [![Studio E Art Therapy for Teens - EFMNY](http://www.efmny.org/assets/Studio-E-Teens-Art-THerapy-EFMNY.jpg "21epilepsy-2-articleInline – Living Well With Epilepsy")](http://epilepsynyc.com/2015/10/studio-e-for-teens-nyc-art-therapy/)October – December, 2015 **The Epilepsy Foundation of Metropolitan New York is excited to announce the first ever Epilepsy NYC Studio E Art Therapy for Teens!** Studio E offers a unique way for people with epilepsy to socialize with others and open up honestly about daily challenges in a trusting, creative environment. Art therapy promotes self-expression and builds confidence. Recent studies have shown that Studio E improves quality of life and self-esteem. After the great success of the Annual Studio E Program hosted by EFMNY and supported by well-received public exhibitions, Art Therapist Melissa Diaz joins us once again to provide an 8-session group program, in the same open studio model, but now tailored specifically for teenagers with epilepsy. **WHO:** Teens ages 15-19 **WHEN:** Tuesdays after school beginning in late October 2015 (8 sessions) **WHERE:** Mount Sinai Beth Israel’s PACC at Union Square #### To Enroll To enroll or learn more please contact Katie Lorenzo at [klorenzo@efmny.org](mailto:klorenzo@efmny.org?subject=Studio%20E%20for%20Teens) or call us at 212-677-8550. The program is offered at no cost to participants. You must be 15-19 years old. Seating is limited and a phone interview with the art therapist is required. [Email to enroll](mailto:klorenzo@efmny.org?subject=Studio%20E%20for%20Teens) --- ### [United Airlines NYC Half Marathon 2016](http://www.nyrr.org/races-and-events/2016/united-airlines-nyc-half) #### March 20, 2016 The EFMNY is an Official Charity Partner of the 2016 United Airlines NYC Half Marathon! Race through Central Park and the streets of Times Square, catch beautiful views of the Hudson River from the west side highway, and finish at the iconic South Street Seaport. The 2016 United Airlines NYC Half provides you with an opportunity to transform lives in a direct and meaningful way. [![NYC Half Marathon 2016 - EFMNY](http://www.efmny.org/assets/NYC-Half-Marathon-2016-EFMNY.jpeg "21epilepsy-2-articleInline – Living Well With Epilepsy")](http://www.nyrr.org/races-and-events/2016/united-airlines-nyc-half) #### EFMNY is looking for runners Run on behalf of the Epilepsy Foundation of Metropolitan New York to raise money for epilepsy awareness but hurry, space on Team EFMNY is limited! [Run on behalf of EFMNY](mailto:charper@efmny.org) #### ![Sharon's Ride - NYC](http://www.efmny.org/assets/Sharons-Ride-NYC.png) --- ### Sharon’s Ride.Run.Walk for Epilepsy – NYC #### June 2016 EFMNY is proud to announce its partnership with Sharon’s Ride.Run.Walk for Epilepsy, one of the nation’s largest and longest ongoing epilepsy education and awareness events, dedicated to the memory of Sharon Rosenfeld, a nurse and teacher, who cared deeply about epilepsy and advocated helmet safety. Sharon’s Ride began in St. Louis in 1995, started by Dr. William Rosenfeld and Dr. Susan Lippman to honor Dr. Rosenfeld’s sister, Sharon, who was killed in a bicycle accident while bicycling cross country. Sharon was wearing a helmet and, unfortunately, nothing could have saved her; however, it is estimated that 5% of new cases of epilepsy and 75% of bicycle related fatalities among children could be prevented by wearing a helmet. #### Sharon’s Ride NYC Sharon’s Ride will kick off the Inaugural Sharon’s Ride NYC in June 2016, and event proceeds will directly support the [Epilepsy Foundation of Metropolitan New York](http://efmny.org). Sharon’s Ride raises awareness of the importance of helmet safety, that helmets worn during head injury-prone sports can prevent many new cases of epilepsy. Dr. Rosenfeld continues to serve as chairman of the event’s nationwide series for the past 21 years, and continues Sharon’s legacy of raising awareness about helmet safety and epilepsy. To learn how you can get involved, please contact[ Chilton Harper at charper@efmny.org ](mailto:charper@efmny.org) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Events and Initiatives **Tags:** Epilepsy Blog Relay, Events, Nov 15 EBR Posts --- ### [Local Events: Sprout Film Festival](https://livingwellwithepilepsy.com/advocacy-awareness/events-initaitives/local-events-sprout-film-festival.html) **Published:** November 12, 2015 **Author:** Jessica K. Smith **Content:** **[![logo(2)](http://livingwellwithepilepsy.com/wp-content/uploads/2015/11/logo2-300x158.jpg "logo(2) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2015/initaitives/epilepsy-events/local-events-sprout-film-festival.html/attachment/logo2)**The dates for the 14th Annual Sprout Film Festival are set. The event will once again return to SVA Theatre in New York City. The event will run from Saturday, May 21 through Sunday, May 22, 2016. The Sprout Film Festival was founded in 2003 and is programmed and supported by Sprout, a New York City based non-profit organization dedicated to bringing innovative programming to individuals with intellectual and developmental disabilities. According to Anthony DiSalvo, Executive Director of Sprout, “This unique event, which focuses exclusively on films that celebrate the diverse lives and creativity of people with I/DD, strives to challenge assumptions and breakdown stereotypes. By introducing powerful, thought-provoking films from around the world to new and ever-more inclusive audiences, we hope to promote greater acceptance, celebrate difference and light the spark to help make the invisible, visible.” #### Call for Submissions The Sprout Film Festival **Call for Submissions** is now open. For details on submitting a film for consideration, please visit the festival website at [www.sproutfilmfestival.org](http://www.sproutfilmfestival.org/) #### **Comcast partners with The Arc & Sprout Film Festival** Through the end of November, Comcast is including 12 films from The Arc & Sprout Film Festival **free On Demand for all Comcast/Xfinity subscribers.** Please note, only Comcast/Xfinity subscribers can access these films. **To view Online**: **To view via Television**: go to On Demand, click into the Specials folder and then click into the folder labeled Disability Awareness. At the top of that page click on the folder labeled Sprout Film Festival. #### [**Sprout Touring Film Festival**](http://www.sprouttouringfilmfestival.org/) Arc & Sprout Film Festivals will be taking place around the country throughout November November 7: Nashville, TN – [The Arc Davidson County and Greater Nashville](http://www.arcdc.org/) November 10: Winchester, VA – [The Arc of Northern Shenandoah Valley](http://thearcofnsv.net/) November 13: Belcamp, MD – [The Arc Northern Chesapeake Region](http://arcncr.org/events_sprout.html) #### More information For more information or to connect with the Sprout community visit the [Sprout Film Festival Facebook ](http://www.facebook.com/sproutfilmfestival)page. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Events and Initiatives **Tags:** Disabilities, Film Festival, Local Events, NYC, Sprout --- ### [Local Events: Paint the Pony Purple in 2016](https://livingwellwithepilepsy.com/advocacy-awareness/events-initaitives/paint-the-pony-purple-in-2016.html) **Published:** February 4, 2016 **Author:** Jessica K. Smith **Excerpt:** The Epilepsy Foundation of New Jersey wants you to join them at the Stone Pony for the 5th Annual Paint the Pony Purple event for epilepsy awareness on Sunday, March 13, 2016. **Content:** [![IMG_2073](http://livingwellwithepilepsy.com/wp-content/uploads/2013/04/IMG_2073-300x224.jpg "IMG_2073 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2016/initaitives/epilepsy-events/paint-the-pony-purple-in-2016.html/attachment/img_2073)The Epilepsy Foundation of New Jersey wants you to join them at the legendary Stone Pony for the 5th Annual [Paint the Pony Purple](http://familyresourcenetwork.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=541) event for epilepsy awareness on Sunday, March 13, 2016. The Stone Pony, a rock and roll treasure, has featured bands such as Live, Hootie and the Blowfish, David Byrne of the Talking Heads, Helmet, The Ramones, Hole featuring Courtney Love, Guster, Silverchair, Culture, King’s X, Catch 22, Joan Osborne and many more. Don’t miss this opportunity to visit the Stone Pony for a purple-themed, family-friendly day full of entertainment, and refreshments. #### Featured Acts EB’s Stroke of Luck Dr. B and the Interns Gaslight The School of Rock Future All Star Band #### Paint the Pony Purple **Date:** Sunday, March 13 **Time:** 1-5pm **Location:** Stone Pony, Asbury Park, NJ **General Admission:** $25 [Purchase Tickets ](http://familyresourcenetwork.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=541) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2013/04/IMG_2042-300x224.jpg "IMG_2042 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-news-and-research/purple-day.html/attachment/img_2042) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2013/04/IMG_2040-300x224.jpg "IMG_2040 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/img_2040) #### Extras Local bakeries will be donating baked goods following the purple event theme. The event will also feature silent and live auctions of several signed guitars, music memorabilia, gifts from local restaurants and businesses, and more! #### To make things interesting The EFNJ will be holding a 50/50 raffle during the event. Raffle tickets, admission tickets and T-shirts available to purchase online. #### Let us know if you’ve been to this event in the past by submitting a comment below. #### Or, [submit info on your upcoming event]() to Living Well With Epilepsy today. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Events and Initiatives --- ### [FDA gathers Patient Perspectives on August 1](https://livingwellwithepilepsy.com/advocacy-awareness/events-initaitives/fda-workshop-patient-perspectives.html) **Published:** July 24, 2016 **Author:** Jessica K. Smith **Excerpt:** On August 1, the FDA is hosting a workshop to gather feedback on patient perspectives, needs and experience with medical devices in Silver Spring, MD. **Content:** [![FDA, White Oak Campus](http://livingwellwithepilepsy.com/wp-content/uploads/2016/07/ucm242284-300x200.jpg "FDA, White Oak Campus – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/advocacy-awareness/events-initaitives/fda-workshop-patient-perspectives.html/attachment/ucm242284)*Photo Credit US Food and Drug Administration White Oak Campus*On August 1st, the Food and Drug Administration’s (FDA) Center for Devices and Radiological Health (CDRH) is hosting a workshop titled [“Partnering with Patients on CDRH’s Research Agenda for Assistive and/or Neurostimulation Devices.”](http://www.fda.gov/MedicalDevices/NewsEvents/WorkshopsConferences/ucm508481.htm) This FREE interactive workshop will gather patient perspectives in Silver Spring, MD on August 1 starting at 8:30 am. **NOTE: [Registration](http://www.fda.gov/MedicalDevices/NewsEvents/WorkshopsConferences/ucm508481.htm#registration) deadline is 4:00 pm (ET), on July 26, 2016.** #### FDA wants Patient Perspectives This unique FREE conference was created to “receive feedback on patient needs and experience on the usability, benefits, and desired features of medical devices.” The epilepsy community certainly has patient needs and opinions when it comes to devices and wearables. Participant feedback will inform science research at CDRH. This is a great opportunity to directly impact research. #### Featured guest: Rosalind Picard This workshop will also feature guests who are known for their device innovation including Rosalind Picard, ScD, FIEEE, of Empatica and MIT Media Lab. You may have heard of Empatica’s [Embrace Watch.](http://livingwellwithepilepsy.com/2016/blog-relay/rosalind-picard-on-the-embrace-watch.html) #### Agenda This FREE workshop will focus on **Assistive and Neurostimulation devices** associated with subpopulations of the following diseases as examples: - Diabetes - Lupus - Macular Degeneration - **Neurological Diseases such as Epilepsy** Take a look at the agenda items from 3:30 to 5:00 pm. When they say they want your perspective, they really mean it. SubjectName of Speaker/Title8:30 amIntroduction, WelcomeDr. Marilyn Lightfoote Dr. Robert Califf, Commissioner Dr. Kyle Myers, OSEL Office Director (Acting)9:00 am – 10:00 amWearable Sensors, Affective ComputingDr. Rosalind Piccard. MIT Emotional sensors10:00 am -10:30 amFDA research on Assistive DevicesDr. Heather Benz, and Dr. Kimberly Kontson Patient perception of limb prosthetics Dr. Matthew Di Prima and Lt. James Coburn 3D printing10:30-10:45 amInfection ControlDr. Elizabeth Gonzales Assuring safety of ophthalmic medical devices10:45 – 12 noonPatient and Clinician Perspective on Assistive DevicesWalter Reed National Military Medical Center Brenda Battat, Formerly Executive Director Hearing Loss Association of America (HLAA), Hearing prosthetics, Fred Downs, Chief of Prosthetics for Veterans Medical Center, Veteran Administration12:00 – 12:30 pmInteractive DiscussionAM Speakers; Patient Representatives12:30 – 1:30 pmLunch Table DiscussionsInformal FDA and Patient Interactions1:30 – 2:30 pmBrain-machine interfacesDr. Todd Coleman, University of California, San Diego. Studies on brain-machine interfaces2:30 – 3:15 pmFDA Research on Neurostimulation DevicesDr. Mejun Ye Brain stimulation therapies Dr. Ethan Cohen Vision Studies Mr. Donald Witters EMC laboratory research on interference between neurostimulators and security devices3:15-3:30 pmBreak3:30 – 4:30 pmPatient and Clinician Perspectives on Neurostimulation DevicesTo be selected from registrants4:30 – 5:00 pmInteractive DiscussionPM Speakers and Patient representatives5:00 -5:15 pmWrap-up; take awayDr. Marilyn Lightfoote5:15 pmAdjourn #### Register today **If you are a patient, provider, caregiver or clinician with experience with Assistive or Neurostimulation Devices and wish to attend this FREE workshop, please provide the following information. Registration deadline is 4:00 pm (ET), on July 26, 2016.** Through this workship, the CDRH hopes patients learn about the role of research and for scientists to understand patient needs and guide future research to best help the patients. To register and find out more information, follow the following link: . The workshop is being held in Silver Spring, Maryland on August 1st and begins at 8:30. [REGISTER TODAY ](http://www.fda.gov/MedicalDevices/NewsEvents/WorkshopsConferences/ucm508481.htm) #### Comments If you attend let us know how it went. We’d love to hear. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Events and Initiatives **Tags:** epilepsy, Events, fda, patients included --- ### [Healthy Aging: Epilepsy and Brain Training](https://livingwellwithepilepsy.com/life-with-epilepsy/epilepsy-wellness/epilepsy-and-brain-training.html) **Published:** September 2, 2022 **Author:** Jessica K. Smith **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/04/pexels-cottonbro-6939468-1024x973.jpg "pexels-cottonbro-6939468 – Living Well With Epilepsy")Similar to [nutrition](https://livingwellwithepilepsy.com/2022/food/nutrition-and-epilepsy.html) and [religion](https://livingwellwithepilepsy.com/2022/religion/epilepsy-and-religion.html), I am not necessarily a model to follow when it comes to making great life choices. I mean, I’m getting better at the whole adulting thing for sure, but it’s taken me longer than I’d like to admit to get to this point. So bear that in mind as I launch into another monologue about something I’ve been testing out lately: brain training. #### Why I started brain training Since I started chemo (BTW, years after my mother was diagnosed with [Alzheimer’s ](https://pubmed.ncbi.nlm.nih.gov/22040899/)and decades after I went on anticonvulsants- what the heck is wrong with me?) I decided to start using crossword puzzles to keep my brain moving even when my body couldn’t (because of the cancer – you know if you follow on social media). Now, I’d love to say the impetus to start this came from wanting to get healthy, or wanting to stave off decline, but in fact it came from wanting to give my niece an additional Christmas present. She wanted a subscription to the [NY Times crossword puzzle app](https://www.nytimes.com/crosswords/apps) on her phone. I tried it out to see how much the subscription was and became addicted. I’ll be honest I’ve never been that person who sits down with a pencil (or god forbid a pen) to complete a hard copy of a crossword puzzle. There is a part of me that likes the hints that come with doing it online. I admit I like the safety net. I find it less scary and that means I can use it as a tool to see how I am doing each morning (cognitively that is). This has been especially helpful after surgery while on pain meds. #### Expanded to include Wordle Since starting the NY Times **mini** crossword, I’ve also started doing [Wordle](https://www.nytimes.com/games/wordle/index.html) every day. I’m straight up addicted and have no idea how I lived without this for so long. This is a benefit of spending so much time with my cousin this winter. She’s whip-smart and it’s all I can do to keep up with her brain. She introduced me to this amazing game and now I can’t stop. I love hearing about everyone’s different method to get to the same word and how frustrated people (myself included) get when they don’t get the word or miss doing wordle that day! #### Does brain training actually work? This is a heavily debated topic. Currently the UCR Brain Game Center is conducting a study with 30,000 participants to ask this question exactly. To learn more [you can read the article in Scientific American here](https://www.scientificamerican.com/article/does-brain-training-actually-work/), or [you can participate in the study via the link](https://www.scientificamerican.com/article/does-brain-training-actually-work/). Personally, I can tell how my brain is doing by whether or not I was able to complete the crossword or if I was able to complete wordle in a timely fashion or at all. I would encourage you to try it, but as I said at the top of the article, you do you. It took me a while to get here so take your time. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Wellness **Tags:** brain training --- ### [Epilepsy Blog Relay: 5 Steps to Create Your Own Epilepsy Zine](https://livingwellwithepilepsy.com/advocacy-awareness/events-initaitives/create-your-own-epilepsy-zine.html) **Published:** April 11, 2022 **Author:** Christalle Bodiford **Excerpt:** Christalle shows how creating an epilepsy zine is an easy and affordable way to get creative and spread epilepsy awareness. **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/04/Intro-Photo.png "Intro Photo – Living Well With Epilepsy")There are three main holidays that the epilepsy community comes together to celebrate. The purpose is to spread epilepsy awareness and educate people about epilepsy and what it’s like to live with the neurological disorder. These holidays are Purple Day, SUDEP Action Day, and Epilepsy Awareness Month. I think we can all agree that no matter whether you enjoy spreading epilepsy awareness via virtual or physical methods, it can sometimes be a challenge to come up with an eye-catching awareness campaign idea. I want to share with you an easy and affordable way to get creative and spread awareness, using limited materials, for people of any age or ability. And the best part? No digital components are required! If you aren’t a “techie person,” no worries! I’ve got your back! ### **1) What Is A Zine?** According to Wikipedia, “A zine is a small-circulation self-published work of original or appropriated texts and images, usually reproduced via a copy machine. Zines are the product of either a single person or of a very small group, and are popularly photocopied into physical prints for circulation.” Let’s simplify that definition a little bit, shall we? A zine is a self-made magazine, using text or images, created by one or more people.. A zine is typically circulated throughout a community via physical distribution. But, it’s important to note that a zine can also be digitally created and distributed. ### **2) What Do You Need?** So what does it take to make a zine? Not much! In fact, you probably have everything you need within your home. If you don’t, I’m sure you have a neighbor or friend that would love to help you complete this fun project! So let’s jump into the supply list. **You will need the following supplies for this creative project.** - **Paper** - Letter Size: 8.5” x 11” - Regular ‘ol printer paper will work just fine. You do not want to use paper that is too thick, or you will not be able to fold your zine properly. A lightweight paper works best. - You will need one piece of paper per zine. - **Pencil** - **Scissors** - **Markers, Pens, Crayons, or Colored Pencils** - Be as creative as you want and use as many colors as you’d like. This is YOUR zine, and you can create whatever your little heart desires!! - **Washi Tape (optional)** - I stick a piece of washi tape on my zines to keep them closed. This is completely optional and not necessary. Once you’ve folded your zine, it should stay in place without taping. ### 3) Select a Topic OK, there is one more thing you’ll need before creating your zine that can’t be purchased, and that is YOUR message! It’s great to make a zine, but what’s the message you want to convey to the people reading your zine? ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/04/Epilepsy-Zines-1024x550.png "Epilepsy Zines – Living Well With Epilepsy") Can’t think of a message? No worries! I’ve come up with three message ideas that I’ll be sharing with you today. **Zine Message Ideas:** - *Warrior Zine* – (Encouragement) Comforting message for the epilepsy community - *Seizure First Aid* – (Awareness) Seizure first aid instructions for educational purposes - *Mini Coloring Book For Warriors* – (Self-care) Motivational illustrations to color as needed ### **4) Set Up Your Pages** The most difficult part about creating your epilepsy zine will be folding the paper in the proper way to ensure your layout is correct. Don’t worry, I’m going to walk you through each step and break it down so it’s easy to follow. ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/04/Zine-Folding-Instructions.png "Zine Folding Instructions – Living Well With Epilepsy")Grab your piece of paper, and let’s get started! **Step 1:** Beginning with your paper in landscape layout, fold your paper in half. **Step 2:** Open your paper. **Step 3:** With your paper in portrait layout, fold your paper in half again. **Step 4:** Open your paper. *As visible in the Step 4 photo above, you should now have two fold lines and four equal rectangles on your paper.* **Step 5:** Fold the right side of your paper to the center fold line. Repeat with the left side of your paper. **Step 6:** Open your paper. *As visible in the Step 6 photo above, you should now have four fold lines and eight equal rectangles on your paper.* **Step 7:** Fold your paper in half (side to side) and cut from the folded edge towards the outer edge for the width of the first rectangle only. *This will create an opening at the center of your paper as shown in the Step 8 photo.* **Step 8:** Fold your paper in half on the fold line and push inward, creating your zine. Press your fingers along the edges to flatten where pages are layered together. (see video below.) **Step 9:** Label your zine using pencil. *This isn’t not a necessary step but will be helpful as you illustrate your zine.* ### 5) Begin Illustrating Now that you’ve got your pages labeled and your zine folded, you can begin creating illustrations. Choose what your zine’s message will be, and begin adding text and images that coordinate with and communicate your message. *If you’re finding it difficult to get started, here are a few tips:* - Do a brain dump before illustrating your zine. Grab a piece of paper and write down or doodle anything that comes to mind. - Try folding your zine before illustrating. Just be sure to layer a piece of paper behind each page as you draw, to avoid ink from leaking onto other pages. - Visualize yourself as the reader. If you’re reading the zine, what information would you like to know? What could be included to add to the reader’s experience? ### How to share your zine Here are some great ways to share zines… - Pen Pals - Event Info - Fundraiser Info - Create a comic - Cheer up a friend - Cause Awareness ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/04/Christalle-Bodiford-300x297.jpg "Christalle Bodiford – Living Well With Epilepsy") ### Tag me so I can see Once you’ve completed your zine, be sure to share it with the world. If you decide to share your zine on social media, tag me so I can see your epilepsy zines!! You can find me at Instagram: [@christallebodiford](https://www.instagram.com/christallebodiford/?hl=en) Facebook: [@christallebodifordart](https://www.facebook.com/ChristalleBodifordArt) ![author avatar](https://secure.gravatar.com/avatar/c482cb9817c757de51d15b05e646343228dc696e4b401b723aec03077d040abd?s=300&d=mm&r=g) Christalle Bodiford Christalle Bodiford is an artist, advocate, writer, and adventure seeker. As an entrepreneur diagnosed with epilepsy, Christalle brings a unique perspective of empowerment that inspires others to embrace a positive mindset and live with purpose. When she’s not writing or advocating, Christalle enjoys puppy snuggles with her scruffy terrier and outdoor adventures with her husband. [See Full Bio](https://livingwellwithepilepsy.com/author/christallebodiford) [ ](https://livingwellwithepilepsy.com/author/christallebodiford) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/CreativeEpilepsyAdvocate/) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://twitter.com/ChristalleArt) **Categories:** Events and Initiatives **Tags:** art, artwork, creative, creativity, Creativity and Epilepsy, Epilepsy and art, epilepsy and creativity, epilepsy zine --- ### [Epilepsy Blog Relay: Leila on Navigating Health Insurance](https://livingwellwithepilepsy.com/advocacy-awareness/healthcare/leilas-ideas-navigating-medial-insurance.html) **Published:** November 4, 2016 **Author:** Leila Shields **Content:** ***[![20160327_130705](http://livingwellwithepilepsy.com/wp-content/uploads/2016/10/20160327_130705.jpg "20160327_130705 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2016/blog-relay/leilas-ideas-navigating-medial-insurance.html/attachment/20160327_130705)****This post is part of the [Epilepsy Blog Relay™](http://livingwellwithepilepsy.com/) which will run from November 1 through November 30. Follow along and add comments to posts that inspire you!* #### Health Insurance and Epilepsy Shopping for insurance can be overwhelming. There are so many things to think about: drug formularies, whether a plan covers your doctors, co-payments, deductibles, the list goes on and on! It’s absolutely possible to sort out all of these things without losing your mind, even if it doesn’t feel like it! Read on for some tips to make your hunt for insurance a little easier. #### **Paying a Premium** Your premium is the amount you pay the insurance every month. This money is just to keep your insurance coverage. It generally does not contribute to your [deductible](https://www.healthcare.gov/glossary/deductible/) and does not pay for any medical services. #### **Co-Payment** This is the money you pay for medical services. When you go to the doctor, have a test done, or any other medical service, you pay a set amount for it. The amount you pay depends on your insurance plan. Generally, the higher your monthly premium, the lower your payment for services. This is ideal for those of us who go to doctors frequently. If you don’t use services often, you may want to opt for a plan that has a lower monthly premium but higher cost of services. If you’re able to choose your plan, calculate how often you go to the doctor to determine whether you want to pay a higher [premium](https://www.healthcare.gov/glossary/premium/) or higher [co-payments](https://www.healthcare.gov/glossary/co-payment/). #### **What is a deductible?** A deductible is the amount of money you must pay before the insurance company begins to pay. If the deductible is $1000, for example, then you will pay $1000 for medical services before the insurance company pays any. Some insurance companies pay for services before the deductible is met. Look to see if this is the case; it can save you money! Check and see if the money you pay for your prescriptions goes towards your deductible. With my previous insurance, my prescriptions did not go to my deductible. If my deductible was $1000, this meant that I still had to pay $1000 before insurance would take over payment for services. If you are purchasing prescriptions often, it can be a benefit to have those funds go towards your deductible. Always check to see if the plan has more than one deductible. I haven’t seen many of these, but some have separate deductibles for medical services and prescriptions. If you have a family, look to see if there is a family and individual deductible. Some plans have deductibles that apply to each person and another deductible that applies to the family. For example, a personal deductible may be $1000 before insurance kicks in, while a family deductible may be $2000 and all payments made by members of the family contribute to it. If the combined members of the family hits $2000 before an individual hits $1000, the insurance will begin to cover costs. #### **Drug Formularies** Always make sure your medication is covered under your insurance plan. Look for the plan’s drug formulary which lists the medications covered and the amount they will pay for. Some companies have different tiers to classify drugs and, depending on the medication, they will cover certain amounts based on the tiers. Check your medicine with each specific plan, not just with each insurance company, to make sure you’re covered. It may not be, and you’ll have to talk with your doctor about switching medications. If you’re on a drug that has different variations, like Keppra vs. Keppra ER, you need to see if your specific version is covered. At one point in my life, Keppra ER wasn’t covered but Keppra was. In some cases, the generic form of your pill will be covered or it will be cheaper than the name brand. With my previous insurance, Keppra wasn’t covered, but it’s was. **Always** talk with your doctor about your medications and what your options are to find one that is covered. **Never** switch to another medication without talking to your doctor. On a related note, make sure your pill size is covered. I was on a medication where the 25 mg and 50 mg tablets were covered but the 75 mg was not; I had to take two pills instead of one just because of it! #### **Doctor Coverage** Each plan varies on the doctors that are covered. Sometimes they are the same across one insurance company, sometimes they aren’t. Just like your prescriptions, make sure to check if all of your doctors are covered. If you have a provider that isn’t covered, check with his/her office to see how much it costs to go to this doctor out-of-pocket. It may not be much more to pay for an appointment without insurance. You can also prioritize your doctors. For example, you probably need the specialists you go to but, if you don’t go to the podiatrist every year, it won’t be as serious if he/she isn’t covered on your plan. (Note: You should attend all your medical appointments as often as they recommend. Do not stop going to a doctor unless you have consulted with him/her.) Different doctors have different costs (specialists sometimes have higher co-pays), so make note of that when calculating your annual medical costs with each plan. #### **Odds & Ends** Some insurance companies prefer you to use [specific pharmacies](http://www.goodrx.com/). In my case, it is a better deal to use a mail order pharmacy as opposed to a store (CVS, Walgreens, etc). My insurance company covers more of the cost that way. See if your insurance does something similar. Always talk with your doctor about your different concerns. If you have questions about specific insurance plans, contact that company. They’ll know how to answer your question based off of their policies. Do your research, take notes, ask questions, and try to stay calm. It can be overwhelming and frustrating to navigate insurance but when you know exactly what you need and how to find it, you’ll be sure to conquer the world of health insurance! --- ***[![](http://livingwellwithepilepsy.com/wp-content/uploads/2016/10/IMG_00641-150x150.jpg "img_00641 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/portfolio/nov5-16/attachment/img_00641)*** ***NEXT UP:*** *Be sure to check out the post tomorrow by Chantal on [LivingWellWithEpilepsy](http://livingwellwithepilepsy.com). You can also read the same post on her site [http://levenmetepilepsie.com/ ](http://levenmetepilepsie.com/)in Dutch. For the full schedule of bloggers visit*[ *the Participants gallery.* ](http://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-nov2016participants) ***DON’T MISS IT: Don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET.*** ![author avatar](https://secure.gravatar.com/avatar/4cebf381fbce646cb0dbabef2348282b941c67524a3f03f08d6e328fa6c976cb?s=300&d=mm&r=g) Leila Shields Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania. [See Full Bio](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/leila.zorzie) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://lzorzie) **Categories:** Healthcare **Tags:** Epilepsy Blog Relay, healthcare --- ### [Healthcare Debate: Abby's Take on Living with a Preexisting Condition](https://livingwellwithepilepsy.com/advocacy-awareness/healthcare/healthcare-debate-abbys-take-on-living-with-a-preexisting-condition.html) **Published:** May 15, 2017 **Author:** Abby Gustus-Alford **Excerpt:** Those working on the new healthcare bill that doesn't cover preexisting conditions must NOT have any loved ones who are affected by one. **Content:** [![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/01/P22-289x300.jpg "– Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2017/yir16/looking-forward-to-a-fresh-start.html/attachment/p22) I do not like to generalize and put a group of people in a box, because I feel like that is a dangerous way to view the world. However, lately I’ve found myself doing this with the group looking at healthcare. I feel like all the people voting for a new healthcare bill that does not cover preexisting conditions must ***NOT*** be affected by one. I say this, because if you or a loved one ***DID*** have a preexisting condition, would you be able to look them in the eye and say, “Sorry, we’ve decided not to help you today.” Could you in good conscious do that? Where is your empathy? #### I Am A Preexisting Condition Well, guess what?!? [\#iamapreexistingcondition](https://twitter.com/hashtag/iamaprexistingcondition?lang=en) and I wanted to help those voting to repeal and replace the [Affordable Care Act](http://www.npr.org/2017/05/05/527092478/obamacare-vs-american-health-care-act-heres-where-they-differ) understand what this means for people with preexisting conditions. I wanted to attempt to put some empathy back into society. I have to assume that you would not vote for a bill that does ***NOT*** cover preexisting conditions if you could put yourself in another person’s shoes for a minute. #### A look at life without health insurance So, what exactly would it mean for me personally if I did not have health insurance? **Seizures** Well, for starters, I would not be able to afford my daily medication to prevent seizures. Every day, I have to take eight pills to stay seizure free. And, I can even confirm for you that I ***need*** all eight, because I recently tried to decrease the dosage and ended up having a break through grand mal seizure. It’s medicine that I absolutely need. **Loss of Job** If I did not have access to my medication to stop the seizures, I would be unable to hold a steady job. With health insurance and the appropriate amount of medication, I have a fantastic job and am a very successful member of society. If I was having seizures, there is no way that I could work. I would be forced to resign due to consistent absences and cognitive deficiencies caused by the seizures. **Loss of Independence** I would probably end up back living with my parents, because I would need constant care. When I do have a grand mal seizure, I am unable to care for myself for 24-48 hours, so there is a very good chance I’d end up living at home with my parents… keep in mind, one of them would need to also quit their jobs to care for me… or I would be in an assisted living facility. **Threat of sudden death** And, finally, in the absolute worst case scenario, I could die from sudden unexplained death in epilepsy ([SUDEP](http://livingwellwithepilepsy.com/iamsudepaware)). This is a fact. Without health insurance and access to the care that I need, I could die from a seizure. I want to be completely honest with you, SUDEP chances are low, but the chances of having a seizure without adequate healthcare are 100 percent. #### Think about your loved ones I’m hoping this gives anybody who wants to repeal and replace the Affordable Care Act with a bill that does not cover preexisting conditions some insight to what life would be like for a person with a preexisting condition like epilepsy. Please, put yourself in my shoes for a minute. Or, stop and think about what if somebody you loved had a preexisting condition? My hope is that you would change your mind. Oh, and by the way, one in every 26 people will develop epilepsy at some point in their lives. You, too, could be a preexisting condition at some point. #justsayin ![author avatar](https://secure.gravatar.com/avatar/fc6da7355dbaf3b5333da396f069a80e1cb0f14ba7b3b3c9d7276454b2c67b50?s=300&d=mm&r=g) Abby Gustus-Alford Abby Gustus Alford was diagnosed with epilepsy at the age of 12 after multiple grand mal seizures over six-mos. She has a BA from Purdue and her Master’s from Northwestern. [See Full Bio](https://livingwellwithepilepsy.com/author/abby) [ ](https://livingwellwithepilepsy.com/author/abby) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://abbyg_alford) **Categories:** Healthcare **Tags:** epilepsy, healthcare, preexisting condition, seizures --- ### [Healthcare Debate: Rachel's Take on Living Without Healthcare Insurance](https://livingwellwithepilepsy.com/advocacy-awareness/healthcare/healthcare-debate-rachels-story.html) **Published:** May 18, 2017 **Author:** Rachel Ehrhardt **Excerpt:** The future of healthcare in the United States has become frightening and scary for our family since three of my four family members have epilepsy. **Content:** [![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/05/IMG_4694-225x300.jpg "IMG_4694 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2017/rachels-perspective/healthcare-debate-rachels-story.html/attachment/img_4694-2)Watching the news the past few days regarding healthcare in the United States for our family has been beyond frightening and scary. I cannot imagine that those around me do not feel that way as well. #### The Financial Impact of Epilepsy I thought the best way to show the impact of what will happen long term to the Epilepsy community without healthcare is to show two examples of times in my from both the times I did have coverage to the times I did not financially. #### Cost of Living Without Healthcare Insurance: First, over the course of the past ten years, the majority of the time I have not had healthcare due to being unemployed or not having funds to afford healthcare. Here is a list of the costs I faced each month while unemployed and uninsured. - Neurologist (took me ten years to find her) – $465 every 6 months - Total per year: $930 - Lamictal – $200 per month - Total per year: $2400 - Topamax – $800 per month - Total per year: $9600 - Birth control (to prevent seizures each month) – $45 dollars per month - Total per year: $540 - Therapy – $78 dollars per week - Total per year: $4056 - Cymbalta (for anxiety) – $200 per month - Total per year: $2400 - MRI- 900 dollars every 2 years - Total per year: $450 - EEG- 800 dollars every 2 years - Total per year: $400 - Lab work- 400-2000 dollars - Total per year: $400 (estimated on low end for this purpose) ##### **Total per year with out healthcare insurance: $21,176** #### Cost of Living With healthcare coverage: Here is what those same items look like with the assistance of healthcare insurance. - Neurologist- 40 dollars every 6 months - Total per year: $80 - Lamictal-20 dollars per month - Total per year: $240 - Topamax-20 dollars per month - Total per year: $240 - Birth control-free - Total per year: $0 - Therapy-20 dollars per week - Total per year: $1040 - Cymbalta-30 dollars per month - Total per year: $360 - MRI-200 dollars every 2 years - Total per year: $100 - EEG-500 dollars every 2 years - Total per year: $250 - Lab work- free if only done yearly on most - Total per year: $0 ##### **Total per year with healthcare insurance: $2310** #### Epilepsy treatment times three For the record, in my family, three out of four members have Epilepsy and would be impacted so multiply all items by three. I cannot stress to you enough about the impact the new American Healthcare Act would have on not only my family but the majority of Americans. Millions of our citizens would be affected by “pre-existing status,” which would eliminate our ability to be considered for coverage. Please contact your representatives in your state representative immediately. They need to know the impact this bill will have on our lives. ![author avatar](https://secure.gravatar.com/avatar/82d406d4460971f22d36968d14d1294a2a0c55c719c5b66a09acb2d2ad3872f2?s=300&d=mm&r=g) Rachel Ehrhardt Rachel Ehrhardt Streelman is from Houston , Texas. She has been a writer and contributor to Living Well with Epilepsy for two years. Rachel has had epilepsy since 9 months old. She comes from a family where her father, sister, and herself all have different forms of epilepsy. Rachel is married to Casey and they have a Cavapoo named Sheldon. [See Full Bio](https://livingwellwithepilepsy.com/author/rachel) [ ](https://livingwellwithepilepsy.com/author/rachel) **Categories:** Healthcare **Tags:** epilepsy, healthcare, healthcare costs, preexisting condition --- ### [Healthcare Debate: Leila's Take on Managing the Cost of a Preexisting Condition](https://livingwellwithepilepsy.com/advocacy-awareness/healthcare/healthcare-debate-leilas-story.html) **Published:** May 22, 2017 **Author:** Leila Shields **Excerpt:** When I calculate the cost of each medication I take, I could be paying over $1000 per month to manage my epilepsy if I did not have insurance to help. **Content:** [![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/05/IMG_20150409_204019-300x300.jpg "IMG_20150409_204019 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/leilas-ideas/healthcare-debate-leilas-story.html/attachment/img_20150409_204019)One of the factors that we don’t talk often about is the cost of living with epilepsy. Like with any long-term (some would say pre-existing) condition, epilepsy often requires regular doctor visits, testing, and daily medications. These things are essential to monitoring seizures and living well with epilepsy. But while essential, they are expensive and can wreak havoc on a family’s budget if they do not have healthcare coverage. #### The Cost of Epilepsy I take 9 pills per day. To some, that’s a lot. To others, that’s nothing at all! Personally, it’s right in the middle of my highest and lowest amount ever. When I calculate the cost of each medication I take, I could be paying over $1000 per month for my medication to manage my epilepsy. My neurologist’s office is about 2 hours from my home. There isn’t a better neurologist that is closer to me and she is in the same network as many of my other doctors, which allows each professional access to my medical records so they can treat me better. When I see her, I have to gas up my car, pay for parking at the office, and pay for the visit. Again, my insurance covers most of my visits with her. If not for this insurance, I would pay hundreds of dollars for a short visit with the most important member of my care team! Between my EEGs and MRIs, I could pay thousands of dollars to pinpoint the problems with my epilepsy. We can, again, give a round of applause to my healthcare coverage for helping me manage this without draining my bank account. #### Life without insurance When all is said and done, if I had to manage my epilepsy without health insurance, I would be in debt up to my eyeballs. I’d have to pay more per month in healthcare costs than I earn. This would only add stress and increase my seizure count, resulting in more doctor visits and probably more testing. It’s a messy spiral effect that could never end. Unfortunately, epilepsy does not always stand alone. I, along with many others, have other “pre-existing conditions” that cost money to treat and can be deemed “high-risk” in healthcare terms. Like epilepsy, many of these are conditions that we didn’t ask for and certainly don’t choose to keep around to make our lives tougher. Limiting my ability to obtain treatment because of something I can’t control is immoral and puts my life at risk. I’m thankful for the health insurance I’ve had over the years–both through employers and through the U.S. Government that has allowed me to manage my epilepsy while still living a normal life. I pray that I never have to give it up. ![author avatar](https://secure.gravatar.com/avatar/4cebf381fbce646cb0dbabef2348282b941c67524a3f03f08d6e328fa6c976cb?s=300&d=mm&r=g) Leila Shields Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania. [See Full Bio](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/leila.zorzie) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://lzorzie) **Categories:** Healthcare **Tags:** epilepsy, healthcare, prexisting condition --- ### [Epilepsy Blog Relay: Michael takes a positive approach to an epilepsy diagnosis](https://livingwellwithepilepsy.com/aboutepilepsy/newlydiagnosed/a-positive-approach-to-an-epilepsy-diagnosis.html) **Published:** November 19, 2018 **Author:** Guest Contributor **Excerpt:** After years of mental and physical trauma from seizures, Michael discovered what he wanted to acomplish as a person, and as someone diagnosed with epilepsy. **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/11/Picture11.png "Picture1(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/a-positive-approach-to-an-epilepsy-diagnosis.html/attachment/picture11)This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from November 1 to November 30, 2018. Follow along!*** #### Michael’s Story More than 25 years ago, I was living a life I loved. I was healthy, recently married, living in a newly purchased home, and had just become a partner at a successful construction company building high end custom homes. Building homes allowed me to be creative, engage my imagination, and help people achieve their dream home. I had no idea everything I loved in life would soon be shattered by epilepsy, losing everything I cherished. One evening after getting home from work, I was taking a shower and, that’s all I remember. I woke up in an emergency room being told I had passed out in the shower resulting in a small impact fracture in my skull and multiple neck fractures. At this first, of soon to be many, ER visits, I wasn’t told this was the start of my epilepsy journey; I was told this was going to be a cardiac journey. I figured my doctors knew what they were talking about so I continued working and driving. #### A little bit of luck Driving home one night I passed out. I was told [my work van went through an irrigation building](https://livingwellwithepilepsy.com/2018/livingwell/work/when-a-seizure-happens-at-work.html) and ended up in an irrigation canal full of water. Someone was looking out for me that night because an air trauma nurse was going to work and her headlights hit my van’s tail lights sticking out of the water. This is when my cardiac journey ended and my epilepsy journey officially started. I was told I have epilepsy. I didn’t know anything about epilepsy or seizures. The prior year and a half all I studied was syncope and reasons why someone may pass out from cardiac issues. I didn’t study epilepsy or learn how I would slowly lose my identity and feeling of self-worth. I felt helpless. I was becoming my epilepsy diagnosis. I’ve lost track of the number of times I’ve woken up in an ambulance after someone called 911 because I had a seizure. At this stage in my life, [I was experiencing very large seizures that resulted in broken bones and teeth](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/nov-18-ebr-posts/screenwriter-shares-her-experience-with-epilepsy.html), dislocated joints, torn muscles, lacerations, heart stopping, and constant mental chaos. I started accepting that doctors might not find a seizure treatment that worked for me. I found this treatment insight the motivating factor for me in changing my mindset. Instead of me waiting for seizure treatments to be found, I realized needed to be in charge of my own life and find ways to move forward. #### Moving Forward I was living my life in a constant and repeating cycle of what I call my four R’s: - **Regenerative:** post-seizure, re-growing muscle tissue, brain connections, my state of being. - **Rehabilitative:** through repeated actions to make myself physically and mentally fit again after a seizure. - **Restorative:** restoring my health, ability to speak, and have a restored sense of well-being. - **Resilience:** I was always amazed at how my body and mind was able to recover quickly from the trauma of seizures. Epilepsy tried to stretch me to the breaking point, through adversity and misfortune, but I was resilient, and, I recovered. #### Small Smart Goals I noticed during all the years of waiting for a seizure treatment to be found, I had put my life on hold. I decided to change, to become more focused on living in the present moment, to focus on getting through the day the best I could. Being present helped me know my body, my mental state, my environment, and my behaviors. I told epilepsy “I’m going that way, if you want to tag along, that’s fine, or if you want to stay behind, that’s even better.” I set some monthly goals like paying rent, but the most impactful thing I did was to break my day down in to small daily goals. From waking up in the morning to going to bed, my small goals were purposeful and made me feel good because I was able to accomplish them, like walking my dogs, or making someone laugh. #### Back to school self-image and self-worth I realized I didn’t really know who I was anymore. Epilepsy had stripped away my sense-of-being many years earlier. After years of mental and physical trauma from seizures, I needed to assess what my abilities were. I decided to go to college. My first class was ‘Career Explorations’ to help me possibly find a job I would enjoy while also helping me feel I was providing for myself. Going back to college helped me become aware of the effects years of seizures and medications had on me. I found I had to be creative in how I learned and completed my class assignments. **Here are a few examples:** - Through my [college’s disability center](https://livingwellwithepilepsy.com/2015/parenting/school/getting-an-advanced-degree-with-epilepsy.html), I took all of my class tests in the testing center, where I was able to have extra time taking tests. - I found I shouldn’t wait until one or two days to start an assignment before it was due because the odds that I would have a seizure preventing me from completing a class assignment was pretty high. - I noticed seizure medications had a strong effect on my cognition, so I planned my test taking when I felt my medications weren’t affecting me mentally. - I got off the bus one stop before my college to get in a little walking exercise, ease my post-seizure body pain, and get a little more blood flow to my head. - I found if I did all of my assignments at the beginning of the week, I could relax the rest of the week, while all of my classmates were stressed because they waited until the day before the assignment was due. #### Mindfulness to manage the journey One topic I studied in college for many years was mindfulness. Using mindfulness in my own life gave me the ability to be aware of things happening in my life in the present moment. Mindfulness helped me become aware of my feelings, thoughts, and sensations within my body. When I found my body was tight, I could take some deep breaths and focus on relaxing muscles that were tight. If I noticed I was feeling sad, I found something fun to do like playing with my dogs, which always brought a smile to my face. If I was having negative thoughts about my life, I quickly reminded myself how far I’d come and things I’d accomplished, even if it was just getting through the day! I feel mindfulness was the most important thing for me to discover many of my personal insights during my epilepsy journey. #### A positive approach So, how am I doing today? My epilepsy journey continues today, but what’s different since the start of my epilepsy journey 25 plus years ago is that today I’m in charge of my journey. I decide who I am and what I’m going to do. Yes, I still have epilepsy, still take a seizure medication and use the RNS System. Today, I live a pretty normal life. Is it the same normal life I lived 25 years ago? No! It’s so much better! I continue to use all of the personal insights I’ve learned throughout the years of living with epilepsy. I volunteer my time sharing my experiences and give support to people living with epilepsy through support and empowerment groups, and as a NeuroPace Patient Educator I get the chance to help patients and families who have questions about a seizure treatment option. These opportunities have given me a reason, a purpose, as to why I went through what I did for so many years living with epilepsy. Please take a moment and [rediscover yourself or discover the new you](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/nov-18-ebr-posts/fran-encourages-others-to-seize-adventure.html). Whatever person you find yourself to be today, acknowledge how far you’ve come and just how amazing you are! --- **NEXT UP:** Be sure to check out the next post by Michael at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/start-here) **TWITTER CHAT:** Save the date for the #LivingWellChat on December 6 at 12 Noon ET. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/11/EBR-Nov18-150x150.png "EBR - Nov18 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/november-2018-participants)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our generous sponsors and partners! [Become a Sponsor ](https://livingwellwithepilepsy.com/2018-19-media-kit-_all) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Newly Diagnosed, Treatments **Tags:** career, College, Mindfulness, RNS --- ### [Epilepsy Blog Relay: Service Animals for Epilepsy and Autism](https://livingwellwithepilepsy.com/life-with-epilepsy/service-dogs/service-animals-for-epilepsy-and-autism.html) **Published:** March 10, 2019 **Author:** Audra Sisak **Excerpt:** Audra will take a deeper look into the world of service animal training. She also includes an interview with Christa Holmans, aka Neurodivergent Rebel. **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/01/40321199_10101017485403350_1340890829920665600_n-225x300.jpg "40321199_10101017485403350_1340890829920665600_n – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/service-animals-for-epilepsy-and-autism.html/attachment/40321199_10101017485403350_1340890829920665600_n)This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) ***which will run from March 1 through March 31. Follow along!*** #### Epilepsy and service animals Audra Sisak resides in Puyallup, WA with her six-year-old son. They are both autistic, have epilepsy, and have other neurodivergent conditions such as dyslexia, dyscalculia, and dyspraxia. According to Audra, “We each struggle with our own anxieties in their own way. Love and support from family, friends, and each other have made the journey through life easier for us!” Audra is a Qualified Autism Service Practitioner (QASP), Certified Autism Specialist (CAS), and Board-Certified Cognitive Specialist (BCCS). Her area of expertise utilizes the [SCERTS model](http://www.researchautism.net/autism-interventions/types/behavioural-and-developmental/combined-multi-component/scerts-model) and [ACT therapy](https://contextualscience.org/act) with autistic children who have co-occurring conditions (especially those with epilepsy) ages ~8-21. She supports the neurodiversity community and believes in [pro-stimming](https://www.autismspectrumexplained.com/our-blog/stimming-has-a-function) along with building self-esteem, and a more inclusive environment. This includes equality and equity for all abilities and disabilities! She has a Master’s in Biomedical Sciences and will have her second Master’s in Psychology completed by Summer of 2019. She works from home remotely as a writer, consultant, and supervisor of therapists in the field/new graduates. #### References: [SCERTS model](http://www.researchautism.net/autism-interventions/types/behavioural-and-developmental/combined-multi-component/scerts-model) [ACT Therapy](https://contextualscience.org/act) [AKC](https://www.akc.org/) [ADI](https://assistancedogsinternational.org/) #### Audra’s Blog Her article will be highlighting the special techniques used to train animals to become service animals! The [American Kennel Club (AKC)](https://www.akc.org/) sets the standards while [Assistance Dogs International (ADI)](https://assistancedogsinternational.org/) also helps with training. It is a long process that requires a large set of expenses but worth it in the end. Join me as we take a deeper look into the world of service animal training. Interview with Christa Holmans, aka [Neurodivergent Rebel](https://neurodivergentrebel.com/), who used to train service dogs will be featured in the article! [READ MORE ](https://ourlifewithautismsite.wordpress.com/) --- ***NEXT UP:*** Be sure to check out the next post by Teo at [livingwellwithepilepsy.com ](http://livingwellwithepilepsy.com)for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay posts](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) you may have missed. [Share your story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://secure.gravatar.com/avatar/b21a0aa498334f5594b605bcb69144d40cce7b2037684d4b246b1590d7b07d35?s=300&d=mm&r=g) Audra Sisak My name is Audra (Momma Employee) and I have a son The Boss. We are both autistic and have epilepsy! We are both trying to navigate this complex world, together. He runs my schedule and we experience love and life as one family. Our journey comes with ups and downs, but it’s our lives. Welcome to our crazy, funny, weird, socially awkward, introverted, anxiety-ridden, happy, joyful page!We are both supportive of neurodiversity! Momma Employee- QASP, CAS, BCCS, Freelance Writer, Advocate. I love working with my community! I support SCERTS model, DLT model, and therapy to include CBT/ACT. [See Full Bio](https://livingwellwithepilepsy.com/author/audrasisak) [ ](https://livingwellwithepilepsy.com/author/audrasisak) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/2015hlwa/) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://2015hlwa1) **Categories:** Service Dogs **Tags:** epilepsy and autism, epilepsy dog, service animals --- ### [Epilepsy Blog Relay: Living With A Spouse Who Has Epilepsy](https://livingwellwithepilepsy.com/life-with-epilepsy/family/epilepsy-blog-relay-living-with-a-spouse-who-has-epilepsy.html) **Published:** March 13, 2019 **Author:** Guest Contributor **Excerpt:** Mike admits, "when your spouse has epilepsy you will find it's easy to help them. It may take a little extra work, but it's worth it because you love them." **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/02/pizap-com15499379611341-296x300.jpg "pizap-com15499379611341 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/parenting/epilepsy-blog-relay-living-with-a-spouse-who-has-epilepsy.html/attachment/pizap-com15499379611341)***This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) which will run from March 1 through March 31. Follow along!*** #### Mike’s story I met my wife Heidi when I was 12 years old. We grew up on the same street together but we didn’t hang around with each other until we both were going to the same college. She was dating someone else. They would come over and she always brought her dog who also had epilepsy. We ran into each other 20 years later at a bank and started dating and then we moved in together. I had never seen Heidi have a seizure until we started living together. At first, it scared me and I was always worried about her. When she would have a tonic-clonic seizure I would call her son up to come over. Even though I knew what to do, I didn’t feel confident so I would call him. After talking to Heidi she finally convinced me that I needed to stop worrying so much. She was right; worrying didn’t do any good, it just made things worse. It created more stress. --- **Related: [Caring for a sick spouse](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/epilepsy-blog-relay-caring-for-a-sick-spouse.html)** --- #### Supporting my wife As a spouse, I have to help around the house more often. When she is sick I cook since she can’t stand over the stove and I do a lot of the housework when she can’t. I have to listen for her when she takes a shower and she has never driven so I do all of the driving. When she has a seizure I get her vagus nerve stimulator magnet and swipe it over her chest to help the seizures stop. When the seizures are really bad I give her rescue medication. I get her to bed and stay with her until they have passed. She hasn’t had any tonic-clonic seizures in years but she has a lot of myoclonic seizures. In fact, just yesterday she had about 80 of them in one day. She took the rescue medication and they stopped fast. Another thing is when you are living with someone who has epilepsy you have to be there emotionally for them too. She doesn’t get depressed often, but once in a blue moon she does and being an emotional support helps. She has taught me how to be good at that. I have multiple sclerosis (I was just diagnosed a few years ago). She has been a great support for me, and that has taught me a lot on how to help someone with an illness. When I am having a bad day she is usually having a good day, so it always seems to work out. She is a very strong person, but when you live with a person who has epilepsy you have to learn to be strong also. You just have to adjust to make it a lifestyle to look after them when they have seizures. Every time you turn around in life you are faced with something. So, you can chalk it up to just one more thing, but you have to commit. Why? Because you love this person and everybody needs love. I don’t think of her as an epileptic. I think of her as a person with an illness. I think of her as “her”, a strong, caring, loving person who has a lot of compassion. I am very proud of the Epilepsy Education and Support page she started to help others. #### Being happy Living with a spouse with epilepsy has become habit and/or routine. People with epilepsy don’t like pity. Especially her. She insists on being as independent as she can, even though she had to stop working because of it. That is another thing: if you live with someone who cannot work because of epilepsy it can make it more difficult financially. You just have to learn to be more frugal. I admit it can wear me out, especially since I have multiple sclerosis but I have learned that if you are taking care of someone with an illness you have to focus on yourself also because if you don’t you won’t be able to help them. That is one thing she has taught me also. She is not used to be hovered over when she is sick. Her family taught her to be very independent, but she does accept the fact that when she needs help not to be ashamed to ask for it. When you love a person with epilepsy it’s easy to help them, it may take extra work, but it’s worth it because you love them and loving Heidi is easy. --- ***NEXT UP:*** Be sure to check out the next post by Samantha at [livingwellwithepilepsy.com ](http://livingwellwithepilepsy.com)for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay posts](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) you may have missed. [Share your story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Family --- ### [Epilepsy Blog Relay: Tips for Your Next Epilepsy Monitoring Unit (EMU) Stay](https://livingwellwithepilepsy.com/aboutepilepsy/newlydiagnosed/tips-for-an-epilepsy-monitoring-unit-emu-stay.html) **Published:** June 11, 2019 **Author:** Alison Kukla **Excerpt:** Alison recently spent 8 days in the University of Virginia’s epilepsy monitoring unit (EMU) in hopes of capturing a few seizures on a video EEG. She brought back a few tips on how to keep your sanity during your next EMU stay. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/05/kukla-emu-300x300.jpg "kukla-emu – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/newlydiagnosed/tips-for-an-epilepsy-monitoring-unit-emu-stay.html/attachment/kukla-emu)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** I kicked off 2019 with an 8-day stay in the University of Virginia’s epilepsy monitoring unit (EMU) in hopes of capturing a few seizures on a video EEG. The EMU stay is part of the evaluation I’m going through to see if I’m an epilepsy surgical candidate. When the EMU stay was first discussed at my doctor’s appointment, I wondered how I could fit it into my schedule with work, etc. Also, the biggest question I had when it was scheduled: How will I keep myself busy for 8 days in the hospital? #### No seriously, how will I keep myself busy for 8 days in the hospital? I talked with some friends who had done EMU stays and they offered great advice. - Bring a good blanket and your own pillows. - Don’t forget some comfy slippers. - Find shows to binge watch. - Only pack button down shirts since the EEG leads get in the way. Their tips were great and helped make the stay feel as homey as possible for my fiancé and me. During the stay, I kept a journal to keep track of my tips, here are some: - Make a snack drawer with your favorites treats. - A 1000-piece puzzle, books, and a few games kept us busy. - If you’re there for awhile, ask if the hospital has laundry services. - Keep a journal, since it may be tough to remember discussions with the doctors. - If you don’t have a rescue medication, make sure to have the doctor prescribe one before you leave. #### The hardest parts There were two hard parts for me. The first was when my fall risk increased once I was off my medicines, since I started as a level 1, which meant I could move around on my own. Once my meds were off, I was primarily stuck in bed and needed my fiancé’s help with everything. The second was how I felt off my medicines. I didn’t know what to expect, since I’ve been on meds in some form since 2006. As I tapered of them, I experienced side effects and when I was complete off them my brain felt like mush, I didn’t feel like myself. After I was back on my medicines, I was super lethargic for about a week. Be patient with yourself as it does take some time to bounce back and feel like yourself again. #### The best part! One last piece of advice, ask the nurses if the hospital has volunteer dogs that can come to the room. I know the surprise visit I had from Wali, a golden retriever and one of UVA’s volunteer dogs, really lifted my spirits. And don’t worry, the glue will come out of your hair, it just takes a few washes! --- **NEXT UP:** Be sure to check out the next post by Abby at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com) for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) posts you may have missed. ![author avatar](https://secure.gravatar.com/avatar/b858d85edb0dbdacad4f1ebeed02cd96c3b494def6cef9fd5fe143caf3bab10a?s=300&d=mm&r=g) Alison Kukla Alison Kukla, MPH, is a tested leader with demonstrated success in coalition building, campaign management, and engagement strategy development in a variety of fields at the local, state, and federal level. Alison is a public health professional with a Master of Public Health in prevention science from Rollins School of Public Health, Emory University. Alison is also a Person with Epilepsy, an Epilepsy Advocate and formerly staff in the Obama White House and EPA. [See Full Bio](https://livingwellwithepilepsy.com/author/alisonkukla) [ ](https://livingwellwithepilepsy.com/author/alisonkukla) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/alisonckukla) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://twitter.com/alisonkukla) **Categories:** Newly Diagnosed **Tags:** eeg, emu, Epilepsy Monitoring Unit --- ### [Epilepsy Blog Relay: Epilepsy and planning a family](https://livingwellwithepilepsy.com/women-epilepsy/pregnancy/epilepsy-and-planning-a-family.html) **Published:** June 10, 2022 **Author:** Alison Kukla **Excerpt:** Alison and husband Preston have talked about planning a family but they knew her epilepsy would mean taking some extra steps. Here she shares their journey. **Content:** ![Alison Kukla](https://livingwellwithepilepsy.com/wp-content/uploads/2022/06/img_0905-768x1024.jpeg "img_0905 – Living Well With Epilepsy") Alison and husband Preston have talked about planning a family but they knew her epilepsy would mean taking some extra steps. Here she shares their journey. ## Epilepsy and Planning a Family For a few years, my husband Preston and I have talked about the possibility of adding a child to our family. Our family is currently made up of our dog, Puck, and two cats, but we knew my epilepsy wouldn’t make it easy and it would take some extra steps. Before we got married in the summer of 2020, we started conversations with my epileptologist about what those extra steps would look like and how long they would take. ## Step 1: Stop Birth Control (after you talk to the doctor) The first step, obviously, was stopping my use of birth control, which I realized I had always been on since I was diagnosed with epilepsy back in 2006. Once I had my IUD removed, my seizures completely changed – [my focal impaired awareness seizures always took place during the day](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/when-a-seizure-happens-at-work.html "Alison’s Story: When a Seizure Happens at Work") but now are only nocturnal. ## Step 2: Track Seizures Preston and I have been tracking them even more closely and working with my epileptologist and fertility doctor since hormones can impact seizure frequency. We’ve noticed a connection between my seizures and different parts of my cycle, which we never noticed before since I was on birth control. ## Step 3: Change Medication if Necessary (talk to doctor) Since I was on a new medicine, and not all medicines are well studied for pregnancy, the next step was to transition off one medicine and replace it with a well-studied medicine. This process can take a while, so I encourage you to talk to your doctor early if you’re planning a pregnancy. For me, the process took just over a year to transition to the new medicine and off the medicine I had been taking that wasn’t recommended for pregnancy. If you’re interested in learning more about epilepsy medicines and pregnancy, you should talk with your doctor and visit the [AED Pregnancy Registry](https://www.aedpregnancyregistry.org/). ## Step 4: Learn as much as possible As we continue our family planning journey, we continue to work closely with both my epileptologist and fertility doctor to identify any next steps I need to take that are related to my epilepsy. Having to take the next steps can get frustrating at times, but it’s important, as it keeps me healthy and if I can get pregnant, it will make for a healthy pregnancy. **And don’t forget to reach out to others who have been through it.** ![author avatar](https://secure.gravatar.com/avatar/b858d85edb0dbdacad4f1ebeed02cd96c3b494def6cef9fd5fe143caf3bab10a?s=300&d=mm&r=g) Alison Kukla Alison Kukla, MPH, is a tested leader with demonstrated success in coalition building, campaign management, and engagement strategy development in a variety of fields at the local, state, and federal level. Alison is a public health professional with a Master of Public Health in prevention science from Rollins School of Public Health, Emory University. Alison is also a Person with Epilepsy, an Epilepsy Advocate and formerly staff in the Obama White House and EPA. [See Full Bio](https://livingwellwithepilepsy.com/author/alisonkukla) [ ](https://livingwellwithepilepsy.com/author/alisonkukla) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/alisonckukla) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://twitter.com/alisonkukla) **Categories:** Pregnancy **Tags:** epilepsy and pregnancy, family planning, Pregnancy, pregnancy and epilepsy, seizures and pregnancy --- ### [Meet Joel and "Flame" the Medikidz wonder dog](https://livingwellwithepilepsy.com/life-with-epilepsy/service-dogs/meet-joel-flame-medikidz-wonder-dog.html) **Published:** November 15, 2014 **Author:** Jessica K. Smith **Excerpt:** Meet Joel Wilcox and his 5 lb papillon seizure assistance dog, Flame, the stars of a new comic book, Medikidz Explain Seizure Assistance Dogs. **Content:** [![Medikidz and Joel, Flame 3](http://livingwellwithepilepsy.com/wp-content/uploads/2014/11/Medikidz-and-Joel-Flame-3-300x225.jpg "Medikidz and Joel, Flame 3 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/11/Medikidz-and-Joel-Flame-3.jpg)Joel Wilcox and his seizure assistance dog, Flame, are the stars of a new comic book, *Medikidz Explain Seizure Assistance Dogs*. The story is inspired by a 14-year old boy named Joel. The comic highlights Joel’s struggles in school as well as his amazing journey with his seizure-assistance dog, Flame. Joel and his mom took a few minutes to speak with Living Well With Epilepsy about his adventures, Flame, the comic book, and living with epilepsy. ### On Epilepsy JESSICA KEENAN SMITH: Joel, thank you for taking time to speak with Living Well With Epilepsy. It’s really important for kids to hear from someone their age who really is living well with epilepsy. How did you get involved with the Eisai/Medikidz Comic Book project? JOEL WILCOX: I wanted to inform and educate people about epilepsy assistance dogs. I always thought it would be easier if you could just hand someone a comic book instead of trying to explain what epilepsy is to someone. I wish they had this book when I was first diagnosed. I’ve shared my book with my friends and it’s pretty cool because I’ve never been able to explain what it feels like to have epilepsy and how Flame helps me manage my seizures. Now the other kids at school can understand what I go through every day. ### On Joel SMITH: Do you mind giving us some background on when you were diagnosed and what type of seizures you have? WILCOX: Sure, I have complex partial seizures. I also have grand mal seizures. At one point I was having a grand mal (tonic clonic) seizure every 30 minutes around the clock. That was really scary for my mom and dad. When it was really bad I would have 15 or so tonic clonic seizures trying to fall asleep at night. Oh yeah and I have atypical absence seizures. SMITH: Wow, that sounds like a lot to handle. It sounds like you tried a bunch of different medications but not long ago you had a [VNS implant](http://livingwellwithepilepsy.com/2011/epilepsy-news/living-well-with-vns-indepth-look.html). How has that been for you? WILCOX: We did try a bunch of different medications and recently I had the [VNS](http://livingwellwithepilepsy.com/2011/epilepsy-news/living-well-with-vns-indepth-look.html) implanted. My mom says she feels like I’m back. When I was on the medicine I was not really myself. I still have to be on some medication to control my seizures even with the [VNS](http://livingwellwithepilepsy.com/2011/epilepsy-news/living-well-with-vns-indepth-look.html) but I’m not so sleepy anymore. My mom says my personality came back. ### On Flame [![Courtesy of Jen Smith from USA - Papillon Ears CC BY 2.0](http://livingwellwithepilepsy.com/wp-content/uploads/2014/11/Papillon_Ears-300x274.jpg "Papillon Puppy – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/11/Papillon_Ears.jpg)Courtesy of Jen Smith from USA Papillon Ears CC BY 20SMITH: Let’s talk about the Flame. How did you find a tiny seizure assistance dog? WILCOX: I wanted to get a seizure assistance dog but I was hoping for a small dog. Flame is a 5 lb papillon and she was perfect. She rides in my backpack to school and everything. Flame even helped me have the confidence to go back to school. SMITH: Flame certainly does sound like a wonder dog! But how was she chosen for the Eisai/Medikidz comic book? WILCOX: We found out about a Medikidz contest through [4 Paws for Ability](http://4pawsforability.org/). Medikidz was looking for a seizure assistance dog to feature in their next comic book. We submitted Flame and she was selected. SMITH: You are in 8th Grade, I’m curious what do you want to be when you grow up? WILCOX: I think I want to be a zoo keeper because I love animals. Koalas are my favorite but really I love any kind of animals. SMITH: Joel, this has been fun. Thank you for taking time to speak with Living Well With Epilepsy. I’m looking forward to hearing more about your adventures with Flame. ### The Next Contest **“Search for the Next Medikidz Star” Contest** The “Search for the Next Epilepsy Star” contest, now open for entries, will identify a child living with epilepsy, who has overcome a challenge or obstacle. Children between the ages of 13 and 18 years old, who have been diagnosed with epilepsy by a health care professional, are encouraged to enter the contest at [ www.advancingepilepsycare.com](http://www.advancingepilepsycare.com). Entrants must register by December 31, 2014 and submit a short (up to two minute) video describing why he or she should be chosen to be the next Medikidz star. [Learn more ](http://advancingepilepsycare.com) ### Eisai and Medikidz As part of Eisai’s commitment to public education about [epilepsy](http://livingwellwithepilepsy.com/epilepsy-101) and helping to reduce stigma associated with the condition, Eisai has teamed up with Medikidz USA Inc. on the school age-appropriate comic book series. In addition to this year’s contest launch, Eisai is also announcing the availability of the second comic book in the series titled, *Medikidz Explain Seizure Assistance Dogs*. “Raising awareness about epilepsy at a young age is more important than ever as stigma about the condition persists,” said James W. Wheless, MD, Professor and Chief of Pediatric Neurology, The University of Tennessee Health Science Center, Le Bonheur Children’s Hospital, Memphis, TN and a peer reviewer of the book. The “Medikidz Explain Epilepsy” series is peer-reviewed by leading medical professionals. To order a free copy of *Medikidz Explain Seizure Assistance Dogs* and learn more about “The Search for the Next Medikidz Star,” visit [www.advancingepilepsycare.com](http://www.advancingepilepsycare.com). [Order a FREE copy ](http://advancingepilepsycare.com) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Service Dogs **Tags:** Interview --- ### [Epilepsy Blog Relay™: Audra talks about therapy dogs](https://livingwellwithepilepsy.com/life-with-epilepsy/service-dogs/epilepsy-blog-relay-audra-talks-about-therapy-dogs.html) **Published:** March 13, 2017 **Author:** Jessica K. Smith **Excerpt:** Audra's Story: Therapy dogs are more than just pets. They help with everyday tasks and help with an emotional factor in autism and epilepsy. **Content:** #### [![](http://livingwellwithepilepsy.com/wp-content/uploads/2016/05/IMG_2587-300x300.jpg "IMG_2587 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2016/emilys-perspective/coping-with-the-holidays.html/attachment/img_2587)Day 13 of the Epilepsy Blog Relay™ [His Life With Autism](http://www.hislifewithautism.com/home.html) is a blog run by Audra Sisak. In Audra’s words it is about, “the fun and exciting adventures of a child on the Autism Spectrum and a mother who loves him to pieces.” #### Audra’s Story Therapy dogs are more than just pets. They help with everyday tasks and help with an emotional piece only people with autism and epilepsy can understand. I would like to introduce our therapy dog TeeTee. [Read Audra’s Post ](http://www.hislifewithautism.com/home.html) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Service Dogs **Tags:** Epilepsy Blog Relay --- ### [Epilepsy Blog Relay: Will Drum for a Service Dog](https://livingwellwithepilepsy.com/life-with-epilepsy/service-dogs/will-drum-for-a-service-dog.html) **Published:** November 28, 2019 **Author:** Guest Contributor **Excerpt:** Brett decided that he needed a service dog. So Brett decided to take matters into his own hands (literally) and raise money with a drum performance online. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/11/brett.png "brett – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2019/parenting/epilepsy-blog-relay-will-drum-for-a-service-dog.html/attachment/brett)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** This blog post was submitted by [Sunovion Pharmaceuticals Inc.](https://livingwellwithepilepsy.com/partners/sunovion), the Founding Sponsor of the November 2019 Epilepsy Blog Relay. #### Denise’s Story When my son Brett was diagnosed with epilepsy, I had a terrible feeling of déjà vu. That is because my older son, Brynnon, also has epilepsy, so my family has dealt with it a lot. So much so, that I once caught my daughter tucking all her dolls in before bed and whispering, “Make sure you have your emergency medicine near you.” While I was disheartened to hear that Brett would also have to live with epilepsy, I felt prepared because of my experience with Brynnon. Brett’s seizures were different from Brynnon’s so I had to learn how to address that. Unfortunately, Brett’s seizures were more severe and took more of a toll on him. Luckily, I knew what to pack for Brett to have everything he needed in case of an emergency. I memorized his list of medications backwards and forwards, so I could tell them to an EMT or a nurse if Brett was having a seizure and my brain was scrambled with worry. I had done all this before. I thought I was ready. But I wasn’t ready for drums. #### Brett takes up the drums About two years ago, Brett decided he wanted to learn to play an instrument, just like his older brother. He tried to pick up the guitar, but his fingers were too short to reach the strings. So, he settled on drums. This is most mothers’ worst nightmare, but I saw it as a motivator. Due to some other health issues, Brett required physical therapy. So, my husband and I went out, bought him a drum set, and put it down in our basement. That way when he wanted to play, we could help him up and down the stairs, and it would be good for him. Brett took to the drums quickly. He watched internet tutorials, and his brother helped him as well. He loved it, and I loved seeing him so happy, even if it made for some noisy nights. Sometimes after a cluster of seizures, the next time Brett practiced, he would discover he’d lost some of his drumming skills. All that hard work and knowledge just washed away. This would always depress Brett, and I couldn’t blame him. I worked with Brett’s doctor so we could choose medications that worked, but did not aggravate his depression or cognition issues. Fortunately, Brett is resilient. Normally, something would reignite his passion –a cool rock performance on TV or just a song on the radio with an awesome drumbeat. He would get back to it, relearning everything he lost and then some. I was, and am, so proud of my boy. #### Four-legged roadie Every rock star needs a roadie, and Brett decided that he wanted the four-legged, furry kind: a service dog. It was going to be tough to come up with the money for a service dog. That’s when Brett took matters, and his drumsticks, into his own hands. With a little help from us, Brett set up a Facebook Live event. He let people know he would be drumming for donations to get a service dog. With that, he launched into his performance. It was all his idea, and his bravery was stunning to our whole family. This tale ends with a tail, Taylor’s tail to be exact. Thanks to help from others and Brett’s drumming, we raised the money to adopt Taylor. Taylor is a beautiful yellow Labrador that has helped Brett feel safer and more confident. Seeing him playing with the dog that he earned doing something he loves warms my heart. Although Brynnon’s journey taught me what seizures looked like and how to communicate effectively with his doctors, I couldn’t prepare for every twist and turn in Brett’s epilepsy journey. Yet, through it all, there have been some wonderful surprises along the way. © 2019 [Sunovion Pharmaceuticals Inc.](https://livingwellwithepilepsy.com/partners/sunovion) All rights reserved. 11/19 NPC-APT-US-00013-19 This blog post was submitted by Sunovion Pharmaceuticals Inc., the Founding Sponsor of the November 2019 Epilepsy Blog Relay. --- **NEXT UP:** Be sure to check out the next post tomorrow at . ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Service Dogs **Tags:** service dog --- ### [Edward shares his experience with epilepsy and assistance dogs](https://livingwellwithepilepsy.com/life-with-epilepsy/service-dogs/edward-shares-his-experience-with-epilepsy-and-assistance-dogs.html) **Published:** November 11, 2020 **Author:** Guest Contributor **Excerpt:** Edward has been fighting a battle with epilepsy for over thirty years. But life changed for the better thanks to his assistance dog "Zern", a Labrador Retriever. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/08/zern-and-ed-during-team-training-at-cpl_o-798x1024.jpg "zern-and-ed-during-team-training-at-cpl_o – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2020/08/zern-and-ed-during-team-training-at-cpl_o.jpg)Edward’s Story I am an individual who has been fighting a battle with epilepsy, diabetes and balance issues each and every day, for over thirty years. This battle with my body has been truly challenging and frustrating, yet my life changed for the better thanks to the partnership with my assistance dog “Zern”, a cream Labrador Retriever. “Zern” truly restored a level of normalcy in my life. Zern was raised and trained by an organization called [Canine Partners for Life](https://k94life.org/). #### How an assistance dog can help “Zern” has been trained to: warn me in advance of each oncoming seizures, provide me balance and support, thus preventing me from falling and injuring myself, open doors for me, pick up items on command, and much more. He is trained to respond to dozens of my verbal commands. He also provides me a necessary distraction that I need when I have to deal with my severe chronic pain that I suffer from, due to my epilepsy. He knows when I am feeling the pain and he works to distract me during these terrible times. #### Types of assistance dogs There are three (3) basic types of Assistance Dogs (under [ADI Standards](https://assistancedogsinternational.org/standards/summary-of-standards/)): · **Guide Dogs** – for the blind and the visually impaired · **Hearing Dogs** – for the deaf and hard of hearing · **Service Dogs** – for people with disabilities other than those related to vision or hearing But, there are many other common examples, such as mobility assistance dogs, medical alert dogs, seizure alert/response dogs, psychiatric service dogs, and autism dogs. Assistance dogs are either bred in selective breeding programs or rescued from animal shelters and raised by volunteers prior to their formal training. Most service dogs are Golden Retrievers, Labrador Retrievers, German Shepherds, collies, standard poodles, etc. Service dogs can often be identified by either a jacket, backpack or harness. #### Resources for assistance dogs For more information about “assistance dogs”, please visit: [Assistance Dogs International](http://assistancedogsinternational.org) (ADI) ADI is a coalition of not for profit organizations that train and place assistance dogs. [International Association of Assistance Dog Partners](http://iaadp.org) (IAADP) IAADP is a non-profit, cross-disability organization representing people partnered with guide, hearing and service dogs. [Working Like Dogs](http://workinglikedogs.com) (WLD) WLD is a resource for people with working and service dogs, or who would just like to learn more about them. #### Recognition for service Each year my assistance dog “Zern” and I look forward to participating in International Assistance Dog Week (IADW) because we are proud of the assistance dog community around the world. This is an opportunity to recognize all these devoted, hardworking dogs helping individuals (like myself), mitigate their disability related limitations. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Service Dogs **Tags:** assistance dog, epilepsy support dog, service dog --- ### [Sudden unexplained deaths in epilepsy or SUDEP](https://livingwellwithepilepsy.com/aboutepilepsy/sudep/45000-sudden-unexplained-deaths-in.html) **Published:** July 5, 2010 **Author:** Jessica K. Smith **Content:** [![](http://livingwellwithepilepsy.com/wp-content/uploads/blogger/_E8vqQ--lvIQ/TDKCT1LkEUI/AAAAAAAAAFc/2sVtDr0iaGI/s320/epilepsy.jpg)](http://livingwellwithepilepsy.com/wp-content/uploads/blogger/_E8vqQ--lvIQ/TDKCT1LkEUI/AAAAAAAAAFc/2sVtDr0iaGI/s1600/epilepsy.jpg)This article was originally published in 2010. As of December 2013 estimates of SUDEP, are closer to a range of 5.5% – 18%. #### What is SUDEP? According to the Danny Did Foundation, Sudden Unexplained Death in Epilepsy (**SUDEP**) refers to the unexpected death of a seemingly healthy person with epilepsy, where no cause of death can been found. #### Recent SUDEP Articles [![sudep](https://livingwellwithepilepsy.com/wp-content/uploads/2023/09/3-407x270.jpg)](https://livingwellwithepilepsy.com/aboutepilepsy/sudep/the-breakdown-on-sudep-with-dr-kim-pargeon.html "The breakdown on SUDEP with Dr. Kim Pargeon") 27 Sep 2023 [##### The breakdown on SUDEP with Dr. Kim Pargeon](https://livingwellwithepilepsy.com/aboutepilepsy/sudep/the-breakdown-on-sudep-with-dr-kim-pargeon.html) | | In this episode, What the EF podcast tackles an audience-requested topic: SUDEP. There are so many questions, and Dr. Kim Pargeon guides through all of them. Available on your favorite streaming service! YouTube, Spotify, Apple,… [ Read More ](https://livingwellwithepilepsy.com/aboutepilepsy/sudep/the-breakdown-on-sudep-with-dr-kim-pargeon.html) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/02/1594245984428.jpg)](https://livingwellwithepilepsy.com/aboutepilepsy/sudep/danny-did-foundation-and-sudep.html "Epilepsy Blog Relay: Danny Did Foundation on SUDEP") 2 Mar 2023 [##### Epilepsy Blog Relay: Danny Did Foundation on SUDEP](https://livingwellwithepilepsy.com/aboutepilepsy/sudep/danny-did-foundation-and-sudep.html) | | The Danny Did Foundation (DDF) has worked tirelessly since 2010 toward its mission to increase awareness of Sudden Unexpected Death in Epilepsy (SUDEP).… [](https://livingwellwithepilepsy.com/aboutepilepsy/sudep/danny-did-foundation-and-sudep.html) [ Read More ](https://livingwellwithepilepsy.com/aboutepilepsy/sudep/danny-did-foundation-and-sudep.html) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/06/SUDEP-Stats-407x270.jpg)](https://livingwellwithepilepsy.com/aboutepilepsy/sudep/my-beef-with-sudep-research.html "Epilepsy Blog Relay: My beef with SUDEP Research") 9 Jun 2022 [##### Epilepsy Blog Relay: My beef with SUDEP Research](https://livingwellwithepilepsy.com/aboutepilepsy/sudep/my-beef-with-sudep-research.html) | | Before I started treatment for Cancer, I knew my “5-yr survival rate” was 39%. Yet it’s taken ~40 years to est. 29% of deaths in epilepsy could be from SUDEP.… [ Read More ](https://livingwellwithepilepsy.com/aboutepilepsy/sudep/my-beef-with-sudep-research.html) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/Bob-and-Dad-407x270.jpg)](https://livingwellwithepilepsy.com/aboutepilepsy/sudep/sudep-and-norse.html "On SUDEP and New-Onset Refractory Status Epilepticus (NORSE)") 28 Nov 2020 [##### On SUDEP and New-Onset Refractory Status Epilepticus (NORSE)](https://livingwellwithepilepsy.com/aboutepilepsy/sudep/sudep-and-norse.html) | | Comedian and actor, Bob Dibuono, shares his family’s experience with SUDEP and New-Onset Refractory Status Epilepticus (NORSE).… [](https://livingwellwithepilepsy.com/aboutepilepsy/sudep/sudep-and-norse.html) [ Read More ](https://livingwellwithepilepsy.com/aboutepilepsy/sudep/sudep-and-norse.html) #### Original Article (2010) Epilepsy is not that serious, right? I mean, its not like you can die from it or anything. Right? According to the [American Epilepsy Society](http://www.aesnet.org/go/patients/post-traumatic-epilepsy/could-i-die-from-a-seizure), “it is very uncommon but not unheard of for people to die with a seizure.” I suspect that the families that have lost a loved one to [SUDEP](http://www.sudep.org) or Sudden Unexplained Death in Epilepsy might have a different opinion. ‘Rare’ and ‘very uncommon’ are what patients hear from medical professionals when they ask the question, “Can I die from epilepsy?” But after having epilepsy for years, I just didn’t believe that the odds were in our favor, considering 3 Million people in the USA have it (and 60 mil in the world). So I did a little digging. It didn’t take much. I quickly found that the AES considers ‘very uncommon’ to be the approximately 45,000 deaths each year. According to the [Epilepsy Foundation of America](http://www.epilepsyfoundation.org), about the same number of people die each year from seizures as die from either breast cancer or traffic accidents. Yep, you read that right. **Breast Cancer** or **Traffic Accidents**. And really, how often are we walking to raise money for epilepsy or passing laws to fight for all those people dying from seizures? Like I said the odds are not in our favor, there are more people in the USA (3 million) with epilepsy than there are people living with: Autism (1.5 million) Parkinsons (1.5 million) MS (400,000) So, now you know epilepsy’s little secret. But what can you do? Well, start by talking about it. Below are some sites you can visit that are talking about epilepsy. [CURE](http://www.cureepilepsy.org) [Talk About It](http://www.talkaboutit.org) [Epilepsy.com](http://www.epilepsy.com) For more startling statistics read Jon Meacham’s article in Newsweek titled “[A Storm in the Brain](http://www.newsweek.com/id/193586)“. Or click on [Epilepsy By the Numbers](http://jessicaksmith.blogspot.com/p/epilepsy-by-numbers.html) ***Update:*** *As of 2016 the American Epilepsy Society and the Epilepsy Foundation have joined forces with the NINDS, CURE, and Danny Did Foundation among other family foundations to raise awareness of SUDEP in a variety of ways including a Partners Against Mortality Conference.* ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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icon](data:image/svg+xml;base64,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) ](https://linkedin.com/in/) **Categories:** SUDEP --- ### [Meet Shelby: Connecting on loss from epilepsy](https://livingwellwithepilepsy.com/aboutepilepsy/sudep/meet-shelby-connecting-loss-epilepsy.html) **Published:** February 22, 2015 **Author:** Shelby McGrath Myers **Excerpt:** Shelby Myers has offered to write from her own experience on Loss from Epilepsy. I hope you will take a minute to connect with Shelby and her story. **Content:** [![mommyandclay](http://livingwellwithepilepsy.com/wp-content/uploads/2015/02/mommyandclay-300x195.jpg "mommyandclay – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/02/mommyandclay.jpg)*Please extend a warm welcome to the newest addition to the Living Well with Epilepsy site. Shelby Myers has offered to write a regular column from her own experience on Loss from Epilepsy. I hope you will take a minute to get to know Shelby and her story.* #### From Shelby I am thrilled to be joining the team and to be able to connect with you. Let me first give you my background and then we’ll chat. #### A little background I am an incredibly proud mother of 5 wonderful children; a wife of 22 years to an incredible man; a daughter, sibling, etc. of an unbelievably strong support system – all of which inspire me and make me whole. In October 2012, one of my children, Clayton, got sick. He was a healthy, loving (the list could go on forever) 6 year old little boy up until that point. Then, he developed a “normal” back to school virus which went to his brain. He was placed in a medically induced coma for seizures which could not be controlled. Then, 5 months later he came home as an infant. He was never able to walk, talk, eat or follow commands-–he could, though, give you a grin that would melt your heart. The doctors could not stop his seizures. We tried everything over the years, but his seizures had a mind of their own. We learned, cried, hoped and prayed, but to no avail. On a beautiful star filled night in August 2012, our little boy became an angel to [Epilepsy](http://livingwellwithepilepsy.com/epilepsy-101 "Epilepsy 101"). Now, I go on, as his voice. #### Why write about loss from epilepsy I agreed to write about loss from epilepsy for this blog because it is so important for our survival, as parents or caregivers. I want to be candid, like we are sitting down having a cup of coffee as old friends. As we all know, old friends are the ones that you can “spill out your heart” without any worry of condemnation or opinion – that will be me. I want you to post comments and together we will make it through the emotions of the loss(es) from epilepsy. Let me be a little more specific: loss of control (doctors, medications, your overall household and the way that you intended your/your child’s life to become); loss of independence; loss of friends (your personal friends and those of your child); ultimately, loss of a loved one due to Epilepsy, or the constant fear of loss of life. We are in this together and will address all of these emotions. Let me know what you would like to chat about, honestly and with no holds barred. #### The real deal I promise that I will do the same for you in my posts. There will be times when my posts may be sad–-let’s face it, Epilepsy is sad. There may be instances that I may be angry or you will feel my frustration within my posts. I hope that you will never read into my posts as “complaining”, but I hope that you will join me in “complaining” in the comments. This is an impossible situation at times, but we will hold each other’s hands. I hope to write about the feeling which you hide. I say “hide” because after writing my memoir, “[Out of the Bubble](http://www.amazon.com/Out-Bubble-Shelby-McGrath-Myers/dp/150235246X)”, I was told (by those who know me) that they never knew how much I was struggling or feeling. Like you, I am sure, most people only saw me at my best. I promise you that we will inspire each other and laugh through our tears and frustrations- and don’t worry about commenting “at your best”- I have been there! So, grab a cup a coffee when you see my next post come up and join me for a chat. I am looking forward to it! ![author avatar](https://secure.gravatar.com/avatar/73af112fa6d5f3cf5fbcb47918045c16eca83822f27c5cdfc1c3279ca6a793cd?s=300&d=mm&r=g) Shelby McGrath Myers Shelby McGrath Myers is the mother to 5 wonderful children – one of whom became an angel due to Epilepsy in Aug 2012. She's founder of Clayton’s Hope Org. Based in USA. [See Full Bio](https://livingwellwithepilepsy.com/author/shelby-mcgrath-myers) [ ](https://livingwellwithepilepsy.com/author/shelby-mcgrath-myers) **Categories:** SUDEP **Tags:** SUDEP --- ### [Loss from Epilepsy: Traditions can be altered](https://livingwellwithepilepsy.com/aboutepilepsy/sudep/loss-from-epilepsy-traditions-can-be-altered.html) **Published:** May 17, 2015 **Author:** Shelby McGrath Myers **Content:** [![facebook_1197090802(1)](http://livingwellwithepilepsy.com/wp-content/uploads/2015/05/facebook_11970908021-300x201.jpg "facebook_1197090802(1) – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/05/facebook_11970908021.jpg)Our world revolved around seizures; therefore, many of our family “traditions” were altered. Epilepsy wasn’t an “if” it was a “when”, “where” and “how” in our lives. This was magnified on holidays and events through the stages of Clayton’s journey, especially when he was first hospitalized. As time progressed, though, we learned the magnitude of our absence in our other childrens’ milestones and “traditions”; therefore, we adapted our “traditional” thought patterns on how we could be present and allow them to have childhood memories. I want to share with you a way that we adapted during Clayton’s initial hospital stay. #### Girl Scout Cookie season Our oldest daughter, Ashley, was 11 the year that Clayton got sick. To an 11 year old Girl Scout cookie selling is a big deal, well maybe to the parents anyway! I cried, literally, at the prospect of my absence at one more “tradition” in her life. I could not man a cookie booth or bring cookies to friends and family, as each day the severity of Clayton’s condition was made more evident. So, we came up with a solution and it worked better than we ever anticipated. We made a sign which read, “I am selling Girl Scout cookies for my sister. Please take a box and leave the money in the can. Thank you – Clayton Myers.” The can was a coffee can, decorated with bright colors, and we cut a slit in the top. Cases, not boxes, of cookies were positioned against Clayton’s hospital room door with the sign proudly hanging above the cases. I not only wanted Ashley to see that we were working to form a solution, but more importantly, that her brother was equally aiding in her endeavor. As I said, it worked! Clayton and Ashley’s cookie sale was the talk of the hospital. I would hear money go into the can in the middle of the night from the staff; parents would wheel their children (and siblings) down to purchase cookies; we laughed at the day the cafeteria employees made a list and came up to make a purchase! #### A taste of home Not only did the sale aide our daughter, but in the end, it gave hope and a little taste of “home” to many families on the ICU floor. In the end, Ashley received her cookie badge and (from recollection 10 years later) she sold 14 cases of cookies – the most in the troop that year. I learned from this experience that, when possible, we had to leave our memories of “traditional’ approaches to life. [Epilepsy](http://livingwellwithepilepsy.com/epilepsy-by-the-numbers) took our carefree attitude of lugging those boxes and sitting in the cold at a cookie table that year, as well as, our son being able to aide his sister in the “traditional” fashion in the future. Though, we overcame – together. #### New traditions Trust me when I say that this was not without heartache, tears or anger, but we look back happily at the outcome of our solution. For you, it may not be a cookie sale, it may be another family tradition which you are facing, but “traditions” can change. Be creative, think from the heart and include your other children in the effort. The solution which you choose will be a success and your children will see that with love and adaptation new traditions can be formed. Most importantly – Epilepsy will not win! #### What new traditions have you started? ![author avatar](https://secure.gravatar.com/avatar/73af112fa6d5f3cf5fbcb47918045c16eca83822f27c5cdfc1c3279ca6a793cd?s=300&d=mm&r=g) Shelby McGrath Myers Shelby McGrath Myers is the mother to 5 wonderful children – one of whom became an angel due to Epilepsy in Aug 2012. She's founder of Clayton’s Hope Org. Based in USA. [See Full Bio](https://livingwellwithepilepsy.com/author/shelby-mcgrath-myers) [ ](https://livingwellwithepilepsy.com/author/shelby-mcgrath-myers) **Categories:** SUDEP **Tags:** SUDEP --- ### [Loss from Epilepsy: Shelby finds signs of Clay everywhere](https://livingwellwithepilepsy.com/aboutepilepsy/sudep/shelby-finds-signs-of-clay-everywhere.html) **Published:** February 1, 2016 **Author:** Shelby McGrath Myers **Excerpt:** I am a firm believer in signs, not the type that are physically positioned throughout our daily lives, but those that are spiritually given to us when we need them most. **Content:** [![Loss from Epilepsy, SUDEP](http://livingwellwithepilepsy.com/wp-content/uploads/2016/01/IMG_20150902_120629-300x300.jpg "IMG_20150902_120629 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2016/loss-from-epilepsy/shelby-finds-signs-of-clay-everywhere.html/attachment/img_20150902_120629)I am a firm believer in signs, not the type that are physically positioned throughout our daily lives, but those that are spiritually given to us when we need them most. We need to open our eyes and hearts and allow these “gifts” to aide us and help us. Since our son Clayton has passed away, I have received many and I have no doubt that he continues to guide us and aide us in our time of need. Although, before our experience of his hospitalizations and illness, I admit that I wasn’t “watching” or “listening” until one beautiful sign gave me strength – that continues to keep me going today. I hope that by me sharing this with you today, it will give you a glimpse of how “signs” are real and that they come in the most unexpected forms. I hope that it will allow you to watch, listen and feel and allow you the peace that comes with the knowledge that you are not alone. #### 2004 Clay had been hospitalized for about a month and his condition was very grave. As with any parent (or loved one), my mood was dependent upon the health and well-being of my child; therefore, none of us were in a good place (mentally or spiritually). On this particular day, I decided to venture to the cafeteria to get lunch, probably in need of a moment away from the current situation. Although, the “situation” was the possibility of [losing my son](http://livingwellwithepilepsy.com/2015/loss-from-epilepsy/meet-shelby-connecting-loss-epilepsy.html) – so getting away mentally, was not possible. I remember standing at the deli counter, probably for a very long time, and not really seeing anything in front me – let alone deciding on what to order. The next moment changed my entire outlook; gave me a mantra to live by and opened my eyes to the signs all around us. A gentleman behind the counter awoke me from my “unconscious” state. He didn’t ask me what I wanted to order, but instead said to me, “I can tell that you are having a bad day”. I am certain that I looked startled and tears filled my eyes as I replied, “yes, my son is having a very bad day.” He looked deep into my eyes as he spoke, smiled and said, “but, you woke up this morning”. He ended that sentence almost as a question awaiting my reply. I smiled, for the first time in what seemed like forever and said, “yes, and so did my son”. It was almost as if a weight had been released. That simple conversation, from a source I would have never imagined, gave me a gift that would aide my entire outlook. He proceeded to take my order and still being stunned by what just happened – I thanked him and went back to Clay’s room. Why do I believe this to be a sign? Not just because it happened when I needed it most, but by what transpired years later. You see, Clay spend 5 months in the hospital and we frequented that cafeteria almost daily, but I never saw that wonderful man again…until- #### 2011 I accepted a position as a Patient Liaison, transitioning home medically fragile children from various hospitals to home. These families and patients were very much like Clay and us. I knew in my heart that I could help these families and aide in their journey through our experiences and was given another sign on my first day. I was at Children’s Hospital, where Clay’s (and our) journey began and decided to grab lunch. I was nervous and, I am sure, somewhat doubting if I had made the right decision. I walked up to the counter and there stood the wonderful man that I hadn’t seen in 7 years! I looked at him and he looked at me and I said, “I am sure that you don’t remember me, but I really need to give you a hug”. I proceeded to hug this stranger, in the middle of the cafeteria, with a line full of people and tears in my eyes. I then proceeded to say, “my son, 7 years ago was doing so bad and you changed my life.” I then said, “do you remember what you said”. Without hesitation, he replied “you got up this morning” and I replied, “and so did he”. Through the 5 years that I worked as a liaison, I never saw that wonderful man again. #### Signs that matter I believe that “signs” are put in our path when we need them most. I can no longer say that Clay got up this morning as a response, but I can say that I did and so did those which I love (especially the four other beautiful souls that I am blessed to have as children). Look for signs, when you need them most, or in your daily travels. I will end this post, as always, by simply saying, “Epilepsy will not win”, for my Clay is always with me and letting me know in beautiful ways. #### Let Shelby know if you have had a similar experience in the comments below. #### Or, [submit your personal story](http://livingwellwithepilepsy.com/share-your-epilepsy-experience) to Living Well With Epilepsy today. ![author avatar](https://secure.gravatar.com/avatar/73af112fa6d5f3cf5fbcb47918045c16eca83822f27c5cdfc1c3279ca6a793cd?s=300&d=mm&r=g) Shelby McGrath Myers Shelby McGrath Myers is the mother to 5 wonderful children – one of whom became an angel due to Epilepsy in Aug 2012. She's founder of Clayton’s Hope Org. Based in USA. [See Full Bio](https://livingwellwithepilepsy.com/author/shelby-mcgrath-myers) [ ](https://livingwellwithepilepsy.com/author/shelby-mcgrath-myers) **Categories:** SUDEP **Tags:** Epilepsy mortality, loss from epilepsy, SUDEP --- ### [Epilepsy Blog Relay: The constant fear of SUDEP](https://livingwellwithepilepsy.com/aboutepilepsy/sudep/the-constant-fear-of-sudep.html) **Published:** March 21, 2018 **Author:** Guest Contributor **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/10/baby-sleeping-300x300.png "baby sleeping – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/baby-sleeping) ***This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay) which will run from March 1 to March 31, 2018. Follow along!*** Today’s post comes from the writer of [The World of Gorgeous Grace](https://theworldofgorgeousgrace.com). Below you will find an excerpt from this piece on living with the constant fear of SUDEP. #### Excerpt I doubt there is a parent out there who doesn’t recall the fear associated with the first year of their baby’s life, due to the heightened risk of cot death. The sense of relief at the first birthday party you are secretly rejoicing in the significantly reduced risk of this terrifying prospect. I recall it vividly with my eldest. A little known, or publicised, fact is that for those with epilepsy the risk is ongoing. According to the Lullaby Trust, 0.27 babies in 1000 are affected by cot death compared with 1 person in every 1000 people with epilepsy who are affected by [SUDEP– Sudden Death in Epilepsy.](https://livingwellwithepilepsy.com/2013/fitnessandepilepsy/latest-update-sudep.html) SUDEP is often unexplained, no reason is found and it is a devastating and complete shock for the families affected. Read the full post at [theworldofgorgeousgrace.com](http://theworldofgorgeousgrace.com/2018/03/19/the-forever-fear-epilepsy/) --- **NEXT UP:** Be sure to check out the next post tomorrow by Randi at [www.sonyasstory.com](http://www.sonyasstory.com). For the full schedule of bloggers visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). **TWITTER CHAT:** And don’t miss your chance to connect with bloggers on the [\#LivingWellChat](https://www.facebook.com/events/205528086692429/) on April 2 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** SUDEP --- ### [Epilepsy Blog Relay: The Pharmacist Mom on her most precious patient](https://livingwellwithepilepsy.com/epilepsy-stories/the-pharmacist-mom.html) **Published:** November 19, 2017 **Author:** Guest Contributor **Excerpt:** As a mom to a child with epilepsy, I want to hold him in my arms and make it all go away. This is when my pharmacist hat comes off. **Content:** **[![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/11/IMG_2368-225x300.jpg "IMG_2368 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/img_2368)This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from Nov. 1 to Nov. 30, 2017. Follow along!** #### Irene’s Story I can still remember the day that I graduated from pharmacy school in 2005. As I walked across the brightly lit stage in my cap and gown, I was overcome with emotion. I was happy that I would finally be considered a Doctor of Pharmacy; I was proud of all the work I had put it; and most importantly, I was excited to help patients manage their medications and make an impact on their lives. People would be relying on me to provide them the appropriate medication with the appropriate dose and appropriate directions. Studies show that patients trust the opinion of their pharmacist and value the relationship, sometimes more than that of their doctor. And I was thrilled to build up my own base of patients. But little did I know, that in the distant future, I would have to wear the pharmacist “hat” for my own son, and that he would become my most precious patient. In 2015, my son, Stavros, contracted autoimmune encephalitis and as a result experienced hundreds of seizures. In the two years following his initial diagnosis, he underwent numerous treatments, including IV steroids, immunosuppressants, epilepsy meds and even chemotherapy. But despite the aggressive therapy, he still struggles with seizures. His initial diagnosis has now led us to a new diagnosis: epilepsy. #### The 30% As a pharmacist, I am aware of the long road that many epilepsy patients travel to get to that magic medication therapy that allows them to live as normally as possible. I have read the clinical trials and reviewed the data on new drug therapies and even medical devices that have helped patients with epilepsy. As a pharmacist, I recognize that Stavros might be in the 30% of patients whom don’t respond to therapy and might always struggle with seizures. #### Pharmacist Mom As a mom to a child with epilepsy, I want to hold him in my arms and make it all go away, the seizures, the medication changes, the side effects. I want to see him excel at everything he wishes to pursue. This is when my pharmacist hat comes off. As his mom, 30% is unacceptable and just like any other mom of a child with an illness, I will never give up or stop fighting for his magic therapy. --- **NEXT UP**: Watch for Maureen’s story on [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). For the full schedule of bloggers participating in the Epilepsy Blog Relay™ visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). **TWITTER CHAT:** And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, Epilepsy Stories, Mothers Day, Nov 17 EBR Posts, Side Effects --- ### [Epilepsy 101](https://livingwellwithepilepsy.com/epilepsy-news-and-research/epilepsy-101-2.html) **Published:** December 18, 2011 **Author:** Jessica K. Smith **Content:** [![](http://livingwellwithepilepsy.com/wp-content/uploads/blogger/-t1iyWE49e08/Tu3_-QLh2pI/AAAAAAAAAmA/8VerLve2wpo/s200/chalkboard_610.jpg)](http://livingwellwithepilepsy.com/wp-content/uploads/blogger/-t1iyWE49e08/Tu3_-QLh2pI/AAAAAAAAAmA/8VerLve2wpo/s1600/chalkboard_610.jpg) When people don’t have the basic facts that’s when myths tend to fill in the blanks. So here is epilepsy in a nutshell: What is Epilepsy? Epilepsy is a chronic neurologic disorder with many possible causes. Anything that disturbs the normal pattern of neuron activity – from illness to brain damage to abnormal brain development – that can lead to seizures. What is a seizure? Seizures can cause strange sensations, emotions, and behavior. Seizures can also cause convulsions, muscle spasms, and loss of consciousness. Is there more than one type of seizure? Yes, there is! There are more than 40 known types of seizures. Does everyone who has a seizure have epilepsy? Having a seizure does not necessarily mean that a person has epilepsy. Only when a person has two or more seizures is he or she considered for a diagnosis of epilepsy. How do you know if you’ve had a seizure? **In my case,** you know because suddenly you are on the floor when previously you were not. Oh, and you can’t explain how you got there. But that is not always the case. [Epilepsy.com](http://epilepsy.com/) has recently added a robust list of definitions and descriptions of all the different types of seizures and types of epilepsy. I suggest that you check it out. How is epilepsy diagnosed? EEG, CAT Scan, and MRI are common diagnostic tests for epilepsy. Epilepsy is usually diagnosed by a neurologist after a person has two or more seizures. For tips on how to find a great neurologist check out [this earlier post](http://jessicaksmith.blogspot.com/2009/07/finding-great-neurologist.html). Is a cause always identified? Not always. The seizures in epilepsy may be related to a brain injury or a family tendency, but often the cause is unknown. The word “epilepsy” does not indicate anything about the cause of the person’s seizures, what type they are, or how severe they are. How can I help someone having a seizure? The 4 C’s of seizure first aid are: Calm, Clear, Comfort, Call. I love the simplicity of this message which applies to both convulsive and non-convulsive seizures. For more information on [first aid](http://jessicaksmith.blogspot.com/2010/08/seizure-first-aid-what-would-you-do.html), check out [this post](http://jessicaksmith.blogspot.com/2010/08/seizure-first-aid-what-would-you-do.html). I hope you found this helpful. Please understand this post barely scratches the surface of epilepsy and seizures. For more news and updates follow Living Well on [Twitter](http://twitter.com/#%21/jessicaksmith) and [Facebook](https://www.facebook.com/livingwellwithepilepsy). ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** About Epilepsy, News and Research --- ### [Epilepsy Stigma: Why Leila is tackling this obstacle in her own way](https://livingwellwithepilepsy.com/epilepsy-stories/leilas-ideas/epilepsy-stigma-why-leila-is-tackling-this-obstacle-in-her-own-way.html) **Published:** April 23, 2015 **Author:** Leila Shields **Excerpt:** Epilepsy stigma is a societal problem. Addressing people one-by-one is helpful, and I hope they teach others what they have just learned. **Content:** [![Leila's Ideas: Epilepsy Stigma](http://livingwellwithepilepsy.com/wp-content/uploads/2015/04/me-and-judith-miller-300x257.jpg "me-and-judith-miller – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/04/me-and-judith-miller.jpg)Walking across the stage at high school graduation in 2008#### **What is Stigma?** Stigma, as defined by [Merriam-Webster](http://www.merriam-webster.com/dictionary/stigma), is “a set of negative and often unfair beliefs that a society or group of people have about something.” This is a widely accepted definition. But, in the full definition, stigma can also be defined as “an identifying mark” or “a mark of shame.” In the medical community, it is more commonly used to mean “an identifying mark,” the mark of a disorder or disease. An example might be the red spots usually seen with chicken pox or the white spots seen in the throat with strep. #### Invisible Illness Epilepsy is sometimes termed an “invisible illness,” one that isn’t easily recognizable just by looking at a person. Not characterized by outward, visible marks, doctors use EEGs, MRIs, and other tests to look at our body and brain to see the marks that seizures leave. But wait…aren’t seizures a pretty identifiable mark of Epilepsy? Absolutely. A seizure is a powerful and sometimes scary image that can signal a person has [Epilepsy](http://livingwellwithepilepsy.com/epilepsy-101 "Epilepsy 101"). The interesting part of that is, that seizures are one of the only ways to outwardly identify a person has Epilepsy. And if someone doesn’t learn additional facts about it, a seizure might be the only information he/she has about Epilepsy or those who have it. That’s where stigma steps in. A person might use what he/she knows about seizures, or those who have seizures, to make assumptions (big and small) about you, me, or anyone else they see have a seizure. #### Reasons for Stigma Stigma is a societal problem. A stigma is a widely accepted opinion or even definition of something. It’s used when individuals don’t know the true facts, when the knowledge base isn’t wide enough to understand the concept at hand. With a disorder such as Epilepsy, where there is information still unknown to professionals, it makes sense that falsehoods would become the norm in society at large. People seek to fill the gaps in their knowledge with whatever they can find. Sometimes, people don’t know they are filling their mind with false information. It’s simply the information that was given to them. For example, I have a friend who told me that one stigma she used to hold was that bright lights always caused seizures. She didn’t know that it wasn’t true; her experiences led her to that conclusion. She used the information she had to make an assumption to understand the world around her. Then, when we met each other and I revealed I had a diagnosis, she learned new information: bright lights do not always trigger seizures. Sometimes they can, but it depends on each person’s response to the lights. Another common stigma I’ve encountered is that grand mal seizures are the only kind. To someone who has only ever seen these types of seizures, that seems true. But with additional information, we learn that there are [over 40](http://www.epilepsy.com/connect/forums/products-resources-helpful-links/over-40-different-types-seizures-revised) types of seizures. #### A Positive Future So, what do we do with this information? We know what stigma is and we know a few of the reasons behind epilepsy stigma. Now what? Well, it’s time for education. When I talked with my friend about my own triggers, she learned that bright lights aren’t a trigger for all who have seizures; personally, lack of sleep and missing medications are two of my own. When I speak with anyone, I try to teach that sometimes seizures are less noticeable than grand mal events. I give them signs of what to look for and an understanding of what causes seizures. > Again, epilepsy stigma is a *societal* problem. Addressing people one-by-one is helpful, and I hope they teach others what they have just learned. Ideally, the message of hope and acceptance will get louder with time. #### Misunderstood We, as the people who have experience with Epilepsy, have a job to reach others and get our message out in the open. This means talking with one another about experiences, achievements and obstacles. This can be difficult. It’s hard to open up and be very real about something as misunderstood as Epilepsy. I’ve had many hurtful labels put on me and I’m certain I’m not alone. Thinking of those nasty remarks makes me want to close up shop; why would I share my story? The rude people labeling me aren’t worthy of hearing my struggles and triumphs, my highs and lows. At these times, I remind myself: these people don’t have the same understanding of seizures that I do. I need to open up to them because they have no other way of understanding what Epilepsy is or does. Perhaps they have never encountered someone with Epilepsy before; why should I expect them to have full knowledge of it? Of course they believe the myths surrounding epilepsy; these are widely believed ideas! #### Dealing with Stigma Just because a person doesn’t understand me yet doesn’t mean I can’t help them. It doesn’t mean that I should be rude and unwilling to understand their beliefs either. Part of having Epilepsy is dealing with stigma. Part of dealing with stigma is being kind to those who may not be kind to you and putting effort into understanding their perspective before they understand yours. #### How are you tackling epilepsy stigma? What is your experience? Leave a comment below. ![author avatar](https://secure.gravatar.com/avatar/4cebf381fbce646cb0dbabef2348282b941c67524a3f03f08d6e328fa6c976cb?s=300&d=mm&r=g) Leila Shields Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania. [See Full Bio](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/leila.zorzie) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://lzorzie) **Categories:** About Epilepsy, Leila's Ideas, Stigma **Tags:** epilepsy, Epilepsy Awareness, Leila's Ideas, Stigma --- ### [Epilepsy Blog Relay: 5 Tips for Finding Hope with Epilepsy](https://livingwellwithepilepsy.com/epilepsy-blog-relay/5-tips-for-finding-hope-with-epilepsy.html) **Published:** March 5, 2023 **Author:** Soo Ihm **Excerpt:** Soo has lived with epilepsy her whole life and shares 5 tips for finding hope when living with epilepsy. **Content:** ## [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/03/soo-img_4531-e1551409315655.jpg "soo img_4531 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2019/03/soo-img_4531-e1551409315655.jpg)Finding Hope I have had seizures all my life. Having seizures everyday and taking zillions of medications two or three times a day is just horrible! It seems like no matter what the next new treatment/medication comes out, it just doesn’t work for you. Believe me, I’ve been through it all. ## 1. Gratitude for the Little Things At one point, I was on five different medications and ithey just weren’t working. I was still having more seizures than you could count. I’ve had a number of hazardous seizures. I’ve had one crossing the street, where I lost consciousness. I’ve also had many tonic clonic seizures at school which was very embarrassing. The scariest seizure was when I had one and rolled down the stairs to the basement. For the past few years, the seizures I’ve had are one second long and I don’t lose consciousness. In spite of all the seizures, I have never had a concussion or anything worse. I am very thankful for that. ## 2. Help with Side Effects When it comes to side effects, I have had a lot, including double vision, dizziness, nausea, weight gain, and depression, Nevertheless, I was willing to try a new drug. I figured, if it didn’t work, I could always drop it. However, when it came to implants (VNS), at the time my doctor suggested it, I was not ready to try it. I did not want a piece of machinery in my body that probably would never be taken out, especially the coils in the vagus nerve up your neck. If it didn’t work, you couldn’t do anything about it except turn off the current. If your doctor wants you to try something you’re not ready for, you need to advocate for yourself. That’s what I did. My doctor never gave up on giving me the VNS, so I got a doctor would listen to me. ## 3. Finding a Good Team Your doctor is the most important person who can help you in your journey to seizure freedom. Since epilepsy is such a difficult disease, most people need to see an epilepsy specialist, an epileptologist. You need one that will listen to your needs, answer your questions. It’s not just the doctor, but the entire medical team, including the nurse(s), neurosurgeons, and other staff. The best epilepsy center you go to have the best doctors who look not just at the individual, but also at the family of the person with epilepsy. ## 4. Having Good Support Fortunately, on my journey, I have a strong base of support. My family, medical team (I have a wonderful doctor who listens to me), friends, and support group. They have been with me through all the ups and downs. I had an RNS implanted under their care and my seizures decreased somewhat. However, I started taking clobazam three weeks ago and have been seizure free so far. Whoo hoo! ## 5. Never Give Up They say that after you have failed two drugs, your chance of seizure freedom falls rapidly and you have almost no hope. Well, after having tried zillions of medications, I think the zillion and 1st has done the trick. If something like this can happen to me, my message to everyone suffering with epilepsy is, as Jesse Jackson said, “Keep hope alive!” ![author avatar](https://secure.gravatar.com/avatar/d52fbb50f14201cb1c4aa52292adb331e89b5086a1db0c1711fed2af943b5367?s=300&d=mm&r=g) Soo Ihm Soo writes the blog Soo’s Epilepsy Corner and is a regular contributor to Living Well With Epilepsy. She lives in Orange County, California. She enjoys traveling, and has been to Europe three times. Her next journey will be just as interesting, with the RNS. [See Full Bio](https://livingwellwithepilepsy.com/author/sooihm) [ ](https://livingwellwithepilepsy.com/author/sooihm) **Categories:** Epilepsy Blog Relay, Mar 23 EBR Posts, Newly Diagnosed --- ### [Jason’s Story: Turning Empathy Into Action While Living With Epilepsy](https://livingwellwithepilepsy.com/partner/sklifescience/jasons-story-turning-empathy-into-action-while-living-with-epilepsy.html) **Published:** December 18, 2025 **Author:** Jessica K. Smith **Excerpt:** For Jason Raether, his epilepsy diagnosis only deepened his empathy and strengthened his commitment to educating those around him. **Content:** *[![empathy and epilepsy](https://livingwellwithepilepsy.com/wp-content/uploads/2025/12/Picture1-600x402.jpg "Picture1 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/partner/sklifescience/jasons-story-turning-empathy-into-action-while-living-with-epilepsy.html/attachment/picture1-6)Sponsored by SK Life Science, Inc.* Living with epilepsy is a deeply personal journey that can change not only how you see yourself, but how you connect with others. For Jason Raether, a middle school nurse in Sioux Falls, SD, his diagnosis didn’t stop him from caring for others—it deepened his empathy and strengthened his commitment to educating those around him. ## **From Diagnosis to Clarity** Jason has spent the past 25 years practicing as a nurse, and today he serves as the school nurse for a bustling middle school of more than 750 students. However, in 2010, he found himself on the other side of patient care when he experienced his first seizure in front of his wife. After being rushed to the hospital, and performing various testing, an EEG confirmed that Jason had epilepsy. He immediately began anti-seizure medication, determined to manage his condition and get back to caring for others. However, as months passed, his seizures persisted. By 2011, he had increased his medication dosage, hoping for better results. Instead, he found himself feeling disoriented. “I just felt like I was in a daze,” Jason recalls. “I was functioning, but I wasn’t really present.” That changed when he met a new neurologist who recognized that Jason’s body may have become too used to his current medication. Together, they explored other options and decided to try XCOPRI® (cenobamate tablets) CV, a prescription medication approved for the treatment of partial-onset seizures in adults 18 and older. Jason began his transition to XCOPRI and he felt an immediate difference. “The transition was easy, and I haven’t had any seizures since starting XCOPRI,” he shares. “I also feel like I have more clarity now that I am taking a lower dosage and less medication overall.” Like any medication, XCOPRI has risks and benefits. Do not take XCOPRI if you are allergic to it or have a genetic problem (called familial short QT syndrome) that affects the electrical system of the heart. XCOPRI can have serious side effects including serious allergic reaction which may affect organs and other parts of your body like the liver or blood cells. XCOPRI may cause problems with the electrical system of the heart (QT shortening). Antiseizure drugs, including XCOPRI, may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call your doctor right away if you have suicidal thoughts or actions, or new or worsening depression, anxiety, or irritability. XCOPRI may cause problems that affect your nervous system, including dizziness, trouble walking or with coordination, feeling sleepy and tired, trouble concentrating, remembering and thinking clearly, and vision problems. Do not drive, operate heavy machinery, or do other dangerous activities until you know how XCOPRI affects you. These are not all of XCOPRI’s side effects. We encourage you to read the Important safety information included at the end of this article. ## **Finding Strength Through Empathy** Jason’s work as a nurse has always been rooted in compassion. But since his diagnosis, he’s found a deeper purpose in connecting with students and families who face similar challenges. At his middle school, Jason not only provides medical support, he also teaches staff members how to respond when a student experiences a seizure. When students come to him scared or embarrassed about their epilepsy, he offers understanding words that few others can. “I tell them, ‘I was in your shoes about six months ago,’” he said. “My seizures look the same as yours.” That honesty brings comfort to his students and confidence to their parents. “When I tell them that I also have epilepsy, I see the relief in their faces,” he says. “They know I understand.” ## **Spreading Awareness and Breaking Stigma** Jason’s passion for advocacy was ignited when he attended an epilepsy awareness walk in Florida. Seeing others have seizures in real time—surrounded by compassion instead of fear—opened his eyes to the power of community and understanding. “That day, I knew I wanted to be more involved,” he says. “I wanted to help care for people with epilepsy and eliminate the stigma that still exists.” For Jason, every day at school is another opportunity to lead with empathy, educate others, and remind those with epilepsy that they’re not alone. His journey from patient to advocate shows how understanding your own challenges can inspire hope—and healing—in others. For more information on XCOPRI, visit [www.xcopri.com](http://www.xcopri.com). **IMPORTANT SAFETY INFORMATION and INDICATION for XCOPRI® (cenobamate tablets) CV** **DO NOT TAKE XCOPRI IF YOU:** - Are allergic to cenobamate or any of the other ingredients in XCOPRI. - Have a genetic problem (called Familial Short QT syndrome) that affects the electrical system of the heart. **XCOPRI CAN CAUSE SERIOUS SIDE EFFECTS, INCLUDING:** Allergic reactions: XCOPRI can cause serious or life threatening skin rash or other serious allergic reactions which may affect organs and other parts of your body like the liver or blood cells. You may or may not have a rash with these types of reactions. Call your healthcare provider right away and go to the nearest emergency room if you have any of the following: swelling of your face, eyes, lips, or tongue, trouble swallowing or breathing, a skin rash, hives, fever, swollen glands, or sore throat that does not go away or comes and goes, painful sores in the mouth or around your eyes, yellowing of your skin or eyes, unusual bruising or bleeding, severe fatigue or weakness, severe muscle pain, frequent infections, or infections that do not go away. Take XCOPRI exactly as your healthcare provider tells you to take it. It is very important to increase your dose of XCOPRI slowly, as instructed by your healthcare provider. QT shortening: XCOPRI may cause problems with the electrical system of the heart (QT shortening). Call your healthcare provider if you have symptoms of QT shortening including fast heartbeat (heart palpitations) that last a long time or fainting. Suicidal behavior and ideation: Antiepileptic drugs, including XCOPRI, may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call your healthcare provider right away if you have any of the following symptoms, especially if they are new, worse, or worry you: thoughts about suicide or dying; attempting to commit suicide; new or worse depression, anxiety, or irritability; feeling agitated or restless; panic attacks; trouble sleeping (insomnia); acting aggressive; being angry or violent; acting on dangerous impulses; an extreme increase in activity and talking (mania); or other unusual changes in behavior or mood. Liver problems: XCOPRI may cause liver problems. Your healthcare provider will do blood tests to check your liver before you start XCOPRI and while you take XCOPRI if needed. Tell your healthcare provider right away if you have any symptoms of liver problems, such as: yellowing of the skin and eyes (jaundice), nausea, vomiting, unusual darkening of the urine, or feeling tired or weak. Nervous system problems: XCOPRI may cause problems that affect your nervous system. Symptoms of nervous system problems include: dizziness, trouble walking or with coordination, feeling sleepy and tired, trouble concentrating, remembering, and thinking clearly, and vision problems. Do not drive, operate heavy machinery, or do other dangerous activities until you know how XCOPRI affects you. Do not drink alcohol or take other medicines that can make you sleepy or dizzy while taking XCOPRI without first talking to your healthcare provider. DISCONTINUATION: Do not stop taking XCOPRI without first talking to your healthcare provider. Stopping XCOPRI suddenly can cause serious problems. Stopping seizure medicine suddenly in a patient who has epilepsy can cause seizures that will not stop (status epilepticus). DRUG INTERACTIONS: XCOPRI may affect the way other medicines work, and other medicines may affect how XCOPRI works. Do not start or stop other medicines without talking to your healthcare provider. Tell healthcare providers about all the medicines you take, including prescription and over-the-counter medicines, vitamins and herbal supplements. PREGNANCY AND LACTATION: XCOPRI may cause your birth control medicine to be less effective. Talk to your healthcare provider about the best birth control method to use. Talk to your healthcare provider if you are pregnant or plan to become pregnant. It is not known if XCOPRI will harm your unborn baby. Tell your healthcare provider right away if you become pregnant while taking XCOPRI. You and your healthcare provider will decide if you should take XCOPRI while you are pregnant. If you become pregnant while taking XCOPRI, talk to your healthcare provider about registering with the North American Antiepileptic Drug (NAAED) Pregnancy Registry. The purpose of this registry is to collect information about the safety of antiepileptic medicine during pregnancy. You can enroll in this registry by calling 1-888-233-2334 or go to www.aedpregnancyregistry.org. Talk to your healthcare provider if you are breastfeeding or plan to breastfeed. It is not known if XCOPRI passes into breastmilk. Talk to your healthcare provider about the best way to feed your baby while taking XCOPRI. COMMON SIDE EFFECTS: The most common side effects in patients taking XCOPRI include dizziness, sleepiness, headache, double vision, and feeling tired. These are not all the possible side effects of XCOPRI. Tell your healthcare provider if you have any side effect that bothers you or that does not go away. For more information, ask your healthcare provider or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088 or at www.fda.gov/medwatch. DRUG ABUSE: XCOPRI is a federally controlled substance (CV) because it can be abused or lead to dependence. Keep XCOPRI in a safe place to prevent misuse and abuse. Selling or giving away XCOPRI may harm others and is against the law. INDICATION: XCOPRI is a prescription medicine used to treat partial-onset seizures in adults. Please see additional patient information in the Medication Guide. This information does not take the place of talking with your healthcare provider about your condition or your treatment. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. 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](https://linkedin.com/in/) **Categories:** SKLifeScience --- ### [New Epilepsy Scholarship Program](https://livingwellwithepilepsy.com/life-with-epilepsy/epilepsy-wellness/new-epilepsy-scholarship-program.html) **Published:** December 12, 2025 **Author:** Jessica K. Smith **Excerpt:** Epilepsy scholarship program for those attending university or college or working toward a trade or certification program. See if you are eligible. **Content:** *This story is sponsored by Epilepsy Wellness Advocates and The Charles L. Shor Epilepsy Opportunity Fund* ## [![](https://livingwellwithepilepsy.com/wp-content/uploads/2025/12/THE-CHARLES-L.-SHOR-EPILEPSY-OPPORTUNITY-FUND-600x600.png "THE CHARLES L. SHOR EPILEPSY OPPORTUNITY FUND – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/the-charles-l-shor-epilepsy-opportunity-fund-2)Epilepsy Scholarship If you are planning to take classes at a 2 or 4 year university or college or toward a trade or certification program in the fall of 2026, and are living with epilepsy you may be eligible for this scholarship. [Learn More ](https://epilepsywellness.com/scholarships/) Applications are accepted December 15, 2025 – March 6, 2026. ## The Charles L. Shor Epilepsy Opportunity Fund This scholarship provides direct financial assistance people with epilepsy attending universities, colleges, technical schools, technical training, and certification programs. The program was created to help individuals diagnosed with epilepsy to empower their future through education. ## Take our Survey 7 Scholarship Survey 1 **Did you know that epilepsy made you eligible for scholarships?** Had no idea!5 Yep I knew2 ## Epilepsy Wellness Advocates This program is offered through the team at Epilepsy Wellness Advocates. This organization aims to provide community & lifestyle resources, educational resources, and unwavering advocacy to those living with epilepsy, their caregivers, and families. Epilepsy Wellness Advocates is funded by the Charles L. Shor Foundation. Mr. Shor has battled epilepsy himself throughout his life and has generously donated millions to epilepsy research and other epilepsy efforts including this scholarship. [Learn More ](https://epilepsywellness.com/scholarships/) ## Epilepsy Scholarship FAQs - **Who is this for:** This program is for people with epilepsy who are living in the United States who have not yet received a bachelor’s degree. - **Application Deadline:** March 6, 2026 at 4pm EST - **Application Opens:** December 15 - **Award Selection & Interview Phase:** March 9 to May 30 - **Award Acknowledgement Period:** June 1 to June 15 - **Who administers the scholarship:** The scholarship is administered by **[The Dayton Foundation](https://www.daytonfoundation.org/scholarships).** - **Does that mean only people in OH can apply:** Nope anyone living with epilepsy who is living in the United States who has not yet received a bachelor’s degree can apply. **For more FAQs or to Apply visit:** [Learn More ](https://epilepsywellness.com/scholarships/) ## Consider Applying So if you are heading to school (or back to school) in the fall of 2026 consider applying for The Charles L. Shor Epilepsy Opportunity Fund. You may receive financial assistance to support your educational goals. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Wellness --- ### [Lainie's story: A journey of mindful acceptance with epilepsy](https://livingwellwithepilepsy.com/life-with-epilepsy/epilepsy-wellness/lainies-story-a-journey-of-mindful-acceptance-with-epilepsy.html) **Published:** November 12, 2025 **Author:** Jessica K. Smith **Excerpt:** Lainie shares her journey of mindful acceptance with epilepsy. She exposes her inner struggle and recognizes the importance of self-love. **Content:** *This story is sponsored by Epilepsy Wellness Advocates and The Charles L. Shor Epilepsy Opportunity Fund* ## [![epilepsy wellness_mindful acceptance](https://livingwellwithepilepsy.com/wp-content/uploads/2016/02/me-e1459302675773.jpg "me – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2016/02/me-e1459302675773.jpg)Lainie’s Story The practice of mindful acceptance, also known as mindfulness, enables us to observe our thoughts rather than be completely pulled into their story line. I was pulled into my own negative story line of having Epilepsy every single day and feeling that there was no control that I had over the situation. Initially, I thought that my fate was to be living a life of constant medication, side effects, grand mal seizures and anxiety, all of which we all know, is a big part of having Epilepsy. When I woke from the haze of my impending fate I realized that I wasn’t going to go down without a fight! It is my belief now that it is possible to be diagnosed with a condition like Epilepsy and not completely hand the reins of your management plan over to a doctor. I spent 8 years on massive amounts of medicine within the doctor’s office. Then I spent the next 12 years tweaking my epilepsy management plan outside of the doctor’s office. ## Take a second to share your thoughts **13 Mindfulness Survey **Would you ever try mindfulness to manage stress as a way to help with your epilepsy?** Definitely9 Probably3 Maybe0 Probably Not1 Definitely Not0** ## Mindful acceptance Over the years I have tried Reiki, Acupuncture, Bowen Therapy, Medicinal Plants, Naturopathy, Western Medicine, Hypnotherapy, Integrative Medicinal therapy which tested minerals, vitamins and nutritional deficiencies in my blood, Meditation, Hormonal balancers and the list goes on. The thing is…..they all worked on some level even though I still had seizures once a month, sometimes twice. **[Read the latest science on Chinese Medicine and Epilepsy](https://www.frontiersin.org/articles/10.3389/fnins.2021.682821/full)** ## Integrative Medicine vs Functional Medicine According to balancedwellbeinghealthcare.com, “Two of the most rapidly growing forms of medical attention include functional and integrative medicine, which aim to address your physical, emotional and mental needs. Functional medicine focuses on creating individualized therapies tailored to treat underlying causes of illness, while integrative medicine seeks to understand the individual as a whole and applies many forms of therapy to improve wellness. Though both functional and integrative medicine are similar in nature, they have unique differences that can help you on your journey towards healthier living.” ## The struggle for mindful acceptance What didn’t work was my inner struggle. I wanted so badly to cure myself of Epilepsy that I never accepted that I even had seizures. Even writing the word Epilepsy for this article had me wanting to use another word in its place. It was only when I realized, through practicing mindfulness meditation and connecting with my body that finding a cure will not cure me anyway. ## A little self-love and gratitude goes a long way Self love and self acceptance of what’s happening right now can be the only cure and this is not something that a doctor can write a prescription for, or that can be infused in a tea strainer or sold via a supplement jar. It’s so good to be walking the journey of Epilepsy empowerment with you all. Thank you to Lainie for sharing her epilepsy journey. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Wellness **Tags:** acceptance, Mindfulness, self love, self-care --- ### [Mindfulness meets epilepsy management](https://livingwellwithepilepsy.com/life-with-epilepsy/epilepsy-wellness/mindfulness-meets-epilepsy-management.html) **Published:** November 13, 2025 **Author:** Jessica K. Smith **Excerpt:** For individuals with epilepsy, mindfulness can be particularly beneficial in managing our seizure threshold. **Content:** *This story is sponsored by Epilepsy Wellness Advocates and The Charles L. Shor Epilepsy Opportunity Fund* ## [![mindfulness and epilepsy](https://livingwellwithepilepsy.com/wp-content/uploads/2024/07/pexels-olly-3772612-600x400.jpg "pexels-olly-3772612 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-wellness/mindfulness-meets-epilepsy-management.html/attachment/pexels-olly-3772612)When Mindfulness meets Epilepsy Management Mindfulness, a core [Dialectical Behavior Therapy (DBT) ](https://livingwellwithepilepsy.com/2024/mentalhealth/what-is-dbt.html)skill, involves staying present and fully engaged in the moment. For individuals with epilepsy, mindfulness can be difficult but it can also be particularly beneficial in managing our seizure threshold. By practicing mindfulness, we can become more aware of our body’s signals, allowing us to detect early signs of seizures and respond accordingly. This heightened awareness can also help reduce anxiety and stress, which for some people are common seizure triggers. As we know, [Epilepsy](https://livingwellwithepilepsy.com/epilepsy) is a neurological condition that requires comprehensive management strategies to maintain health and quality of life. In fact, anyone who has been on the journey to simply get a diagnosis of epilepsy knows this is true. It may sound crazy, but combining neurology with mindfulness through DBT skills can help manage seizure triggers and stress. ## Take a Second to Share Your Thoughts 4 Mindfulness Survey 2 Do you ever find yourself moving through life on autopilot? Always1 Very Often2 Sometimes1 Rarely0 Never0 ## What This Does Not Mean This does NOT mean you stop taking your meds because you have become super effective at meditating. Or you bail on visits with your neurologist because you found a super cute meditation outfit. This is not okay and will definitely not help your seizure management. ## Benefits of Mindfulness for Epilepsy There are many benefits of mindfulness for epilepsy management. First off, according to the APA, [mindfulness can help reduce stress and anxiety.](https://www.apa.org/topics/mindfulness/meditation) Stress and anxiety are both [known to exacerbate seizures](https://www.sciencedirect.com/science/article/abs/pii/S0074774220300106). By staying present and focused, you can maintain a calm state of mind, reducing the likelihood of stress-induced seizures. One other note here: I don’t make any claim that this is easy. It takes practice. The stress of not knowing how seizures and side effects will impact your life is a big obstacle. This is just another tool to help manage that obstacle. Secondly, mindfulness enhances your ability to recognize early seizure signs, enabling you to take proactive steps to manage your condition. This can involve adjusting your environment, taking medication, or engaging in calming activities to prevent seizures. All good things when these little changes can keep you safer. It does actually help to be a little more connected to your body. This can help you tune into what may come before seizures and give you a chance to get to a safe place. ## Integrating Mindfulness into Your Daily Routine Integrating mindfulness into your daily routine can lead to better health outcomes and a more balanced life. Start by setting aside a few minutes each day for mindfulness practice. It won’t be perfect at first. In fact it will be annoying. But if you can stick with it, using techniques such as deep breathing, body scans, and mindful observation once or twice a day you might find it helpful. Over time, these practices will become second nature, (I swear they will) helping you stay present and reduce stress throughout the day. They will help eventually. ## The Mindful Approach to Epilepsy Management Combining traditional neurology with mindfulness through DBT offers a unique approach to epilepsy management. This method addresses both the physical and emotional aspects of epilepsy, providing a comprehensive strategy for maintaining health and quality of life. By incorporating mindfulness into your routine, you can enhance your neurological care and improve your overall well-being. ## Managing Epilepsy By integrating skills like this into your daily routine, you can reduce stress, recognize early seizure signs, and improve your overall health. If you consider trying this, you might just discover the benefits of combining neurological care with mindfulness for a more balanced and effective epilepsy management strategy. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Wellness **Tags:** #epilepsycoach, DBT and Epilepsy --- ### [My perspective on gratitude](https://livingwellwithepilepsy.com/life-with-epilepsy/epilepsy-wellness/perspective-on-gratitude.html) **Published:** December 2, 2025 **Author:** Jessica K. Smith **Excerpt:** It's not always easy, this life and feeling grateful, especially when epilepsy is in the mix. So, I wanted to share a little about my perspective on gratitude. **Content:** *This story is sponsored by Epilepsy Wellness Advocates and The Charles L. Shor Epilepsy Opportunity Fund* [![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/05/jks-headshot_long-e1622090621521-251x300.jpg "jks headshot_long – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2021/05/jks-headshot_long-e1622090621521.jpg)I don’t usually write blog posts from my own perspective, but so much has happened in the past few years and I’m feeling immense gratitude to be able to even be here to celebrate Thanksgiving. So, I wanted to share a little about my perspective on gratitude. ## Gratitude for my epilepsy In October 2021, I was diagnosed with Stage 3C Ovarian Cancer. Since that time I have had multiple surgeries, undergone so much chemotherapy I’ve lost count of how many rounds and my body has been through the wringer. This experience clarified for me how important epilepsy advocacy is to me. And the stark differences in the way we as a society treat people with different diagnoses as well as how we approach acute vs chronic illness. Were it not for my cancer diagnosis, I cannot be certain I would have begun epilepsy coaching. And now epilepsy coaching has had such a positive impact on so many people thanks to the grant from Epilepsy Wellness Advocates. For this I am grateful. ## Share your Opinion 3 Gratitude Survey **Would you ever try practicing gratitude to manage stress as a way to help with your epilepsy?** Definitely2 Probably1 Maybe0 Probably Not0 Definitely Not0 ## Gratitude for the epilepsy community A few years ago, I had the opportunity to talk to hundreds of families living with epilepsy at Epilepsy Day at Disneyland in California. This was an opportunity to validate their feelings and experiences, and remind them they are not alone. These conversations reminded me how grateful I am to have seizure control as I could very easily have switched places with any one of the families I spoke to had the fates allowed. ## Gratitude for my family These past few years have been extremely difficult for my family. My husband and daughter have been by my side for every treatment and side effect. As has my in-laws and my sisters. My sisters and I have become closer as a result of also having lost our parents at the beginning of this saga. I can never express how grateful I am to my husband, daughter, sisters, cousins, and my friends. The love and support they have shown is beyond anything I could have expected. ## Gratitude for my husband and daughter It is worth mentioning again. My husband and daughter have essentially supplied the air I breathe. They bring positivity into my life and relieve worry whenever they can. They are the best things that ever happened to me. I am grateful to have them in my life. ## Gratitude for me I have worked hard to focus on the positive despite my circumstances. I believe we have an opportunity to be grateful for this life. It’s not always easy – life and being grateful. But if you give it a second and you start appreciating the little things, eventually you can begin to appreciate you and the space you take up in this world. I will leave you with a quote that is currently my daily reminder: > “We have no cause for anything but gratitude and joy.” > ― Buddha ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Wellness **Tags:** gratitude --- ### [Managing Stress with Epilepsy by Integrating Gratitude](https://livingwellwithepilepsy.com/life-with-epilepsy/epilepsy-wellness/integrate-dbt-into-daily-life-morning-mindfulness-to-evening-reflection.html) **Published:** December 2, 2025 **Author:** Jessica K. Smith **Excerpt:** Integrating gratitude into your daily life, from morning mindfulness to evening reflection, can enhance your emotional resilience and well-being. **Content:** *This story is sponsored by Epilepsy Wellness Advocates and The Charles L. Shor Epilepsy Opportunity Fund* ## [![managing stress](https://livingwellwithepilepsy.com/wp-content/uploads/2025/11/1-600x600.jpg "1 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-wellness/integrate-dbt-into-daily-life-morning-mindfulness-to-evening-reflection.html/attachment/1-14)Managing Stress with Epilepsy We know that epilepsy shapes daily routines, emotional resilience, relationships, our sense of control and defines how we manage stress. For many people living with epilepsy, managing stress, uncertainty, and the pressure to “keep going” can narrow the Window of Tolerance—the zone where we feel capable, grounded, and able to manage life’s demands. Once we slip above or below this window, our bodies may shift into hyperarousal (anxiety, panic, irritability) or hypoarousal (shutdown, exhaustion, numbness). One tool that can help with this is a gratitude practice. ## Share your opinion 3 Gratitude Survey 2 **Would you consider trying a daily gratitude practice for a month?** It’s Likely3 Maybe0 Probably Not0 Anyone who has participated in [epilepsy coaching](https://livingwellwithepilepsy.com/epilepsy-coach/epilepsy-coaching-is-now-available-for-free.html "Epilepsy Coaching is Now Available for Free") with me has heard about the window of tolerance. But just in case this is new to you, I’ve included a diagram here. ## Try Gratitude, I Swear Integrating gratitude into a daily routine may seem dumb, simple, even overly positive at first glance. And you are not wrong, initially. You sort of have to convince yourself to give it a try. However, the reality is that gratitude is a powerful, evidence-informed tool that can widen or restore our Window of Tolerance, especially when combined with Dialectical Behavior Therapy (DBT) skills. I promise it is far from the toxic positivity it appears. Gratitude, if it becomes a practice, can help reclaim small moments of stability, soothe the nervous system, and strengthen a sense of agency in the face of chronic uncertainty. Which, frankly is exactly what life is like when living with epilepsy. ## Gratitude and Managing Stress Living with epilepsy often involves unpredictability—seizures may interrupt plans, medication side effects can disrupt mood or cognition, and the constant awareness of risk can be exhausting. Gratitude does not erase difficulty, but it gently balances the mind’s bias toward threat by increasing awareness of moments of safety, connection, and support. These moments help the brain shift out of survival mode and back toward regulation. **Regular gratitude practices have been shown to:** - [Reduce perceived stress](https://pmc.ncbi.nlm.nih.gov/articles/PMC10393216/) - Improve sleep quality - [Strengthen emotional resilience](https://positivepsychology.com/neuroscience-of-gratitude/) - increase feelings of connectedness - [Improve mood and reduce symptoms of anxiety and depression](https://pmc.ncbi.nlm.nih.gov/articles/PMC10393216/) All of these support epilepsy management, especially for those who experience seizures triggered by stress, sleep disruptions, or emotional overwhelm. ## Gratitude and Mindfulness Mindful gratitude helps redirect attention toward the present moment without judgment. When someone living with epilepsy is caught in fear of the next seizure or frustration with side effects, intentional gratitude helps anchor the mind in what is going well right now, even if it’s small. This gentle focus lowers emotional intensity and supports coming back into the Window of Tolerance. ## Gratitude Practices for People Living With Epilepsy These practices are accessible whether someone is newly diagnosed, managing medication side effects, or living with uncontrolled seizures. 1. **Three Things Gratitude** Write or speak three things you are grateful for right now, no matter how small: \* “I’m grateful that the morning was calm.” \* “I’m grateful my medication reminder went off.” \* “I’m grateful for a friend who checked in today.” 2. **Body-Based Gratitude** Notice one thing your body did for you today: \* “My legs carried me to the kitchen.” \* “My breath stayed steady.” \* “My brain helped me solve a problem.” This can be powerful for those who feel betrayed by their bodies 3. **Gratitude Pauses** When you feel overwhelmed: \* Stop \* Take a breath \* Observe one thing you are grateful for in this moment \* Proceed mindfully This intervention can help return you to your Window of Tolerance before emotional escalation. ## One last note Gratitude does not deny the challenges of epilepsy or the efforts it takes when managing stress with this disease. However, for many people living with epilepsy, gratitude becomes an anchor: a small, steady habit that makes space for hope, connection, and resilience. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Wellness **Tags:** #epilepsycoach --- ### [Kids with epilepsy head back to school](https://livingwellwithepilepsy.com/life-with-epilepsy/school/backtoschoolwithepilepsy2012.html) **Published:** September 2, 2012 **Author:** Jessica K. Smith **Excerpt:** To parents of children with epilepsy, heading back to school can be overwhelming. It can help to know there are resources available to your family. **Content:** [![Back to School Fall Leaves](https://livingwellwithepilepsy.com/wp-content/uploads/2012/09/IMG_3416-e1408377453490-1024x765.jpg "IMG_3416 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2012/09/IMG_3416-e1408377453490.jpg) ## Back to School with Epilepsy To parents of children with epilepsy, heading back to school can feel like heading into a hurricane. But it can help to know there are resources available to you and your family. Included are websites on how to talk to school about epilepsy and information on the [Individuals with Disabilities Education Act (IDEA)](https://www.understood.org/en/articles/individuals-with-disabilities-education-act-idea-what-you-need-to-know). It is important for all parents of children with epilepsy to know that IDEA exists for your protection. Below is a summary which is available through [understood.org](https://understood.org). ## Individuals with Disabilities Education Act (IDEA) The process of finding a child eligible for early intervention or special education and related services under IDEA begins with a comprehensive and individual evaluation of the child in order to: - establish that the child does, indeed, have a disability; - get a detailed picture of how the disability affects the child functionally, developmentally, and academically; and - document the child’s special needs related to the disability. This evaluation is provided free of charge through either the early intervention system (for infants and toddlers under the age of 3) or through the local school system (for children ages 3-21). Under IDEA, children with epilepsy are usually found eligible for services under the category of “Other Health Impairment” (OHI). We’ve included IDEA’s definition of OHI below: ## IDEA’s Definition of “Other Health Impairment” The nation’s special education law specifically mentions epilepsy in its definition of “Other Health Impairment,” a category under which children may be found eligible for special education and related services. Here’s IDEA’s definition. (9) Other health impairment means having limited strength, vitality, or alertness, including a heightened alertness to environmental stimuli, that results in limited alertness with respect to the educational environment, that— (i) Is due to chronic or acute health problems such as asthma, attention deficit disorder or attention deficit hyperactivity disorder, diabetes, epilepsy, a heart condition, hemophilia, lead poisoning, leukemia, nephritis, rheumatic fever, sickle cell anemia, and Tourette syndrome; and (ii) Adversely affects a child’s educational performance. [34 CFR §300.8(c)(9)] ## For more information Also be sure to check out the Epilepsy Foundation’s page on [legal rights of person’s with epilepsy](http://www.epilepsyfoundation.org/resources/epilepsy/legalfactsheets.cfm#education). And don’t forget to let us know your thoughts! ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** School --- ### [Tips on creating 504 and IEP plans for your child with epilepsy](https://livingwellwithepilepsy.com/life-with-epilepsy/family/epilepsy-blog-relay-tips-on-creating-504-and-iep-plans-to-safeguard-your-child-with-epilepsy.html) **Published:** November 3, 2018 **Author:** Jessica K. Smith **Excerpt:** Audra offers some tips on creating a 504 and an IEP plan to safeguard your child with epilepsy at school. **Content:** ## **[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/03/IMG_2587-300x300.jpg "IMG_2587-300x300 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/home/attachment/img_2587-300x300)**Audra’s Story My name is Audra (Momma Employee) and I have a son (The Boss). We are both autistic and have epilepsy! We are both trying to navigate this complex world, together. He runs my schedule and we experience love and life as one family. Our journey comes with ups and downs, but we would not have it any other way. Welcome to our crazy, funny, weird, socially awkward, introverted, anxiety-ridden, happy, joyful page! --- Related article: [**David on IEPs, 504 plans and the need for epilepsy awareness in education**](https://livingwellwithepilepsy.com/2018/aboutepilepsy/special-education/ieps-504-plans-and-the-need-for-epilepsy-awareness-in-education.html) --- #### The 504 and the IEP: Five Steps to Take for Understanding Your Child’s Rights **Step 1: Learn together** Epilepsy Training for Staff: Yes, you as the parent can request yearly epilepsy training for anyone who encounters your child. This is written into the [Individualized Education Plan (IEP)](https://adayinourshoes.com/seizure-epilepsy-iep/). The school might say that only the nurse or medical provider needs to do it, but this is not the case. Any teachers, bus drivers, aides, therapists, or medical staff need the training. --- ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Autism and Epilepsy, Family, Nov 18 EBR Posts **Tags:** 504, autism, autism and epilepsy, iep --- ### [Epilepsy Blog Relay: Finding a New Doctor while Living with Epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/finding-a-new-doctor-while-living-with-epilepsy.html) **Published:** July 30, 2021 **Author:** Whitney Petit **Excerpt:** It was back to the drawing board for me. I was left wondering if I could get lucky twice when it came to choosing a new doctor while living with epilepsy. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/10/Whitney.jpg "Whitney – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-stories/finding-a-new-doctor-while-living-with-epilepsy.html/attachment/whitney) #### Whitney’s Story I had so much anxiety when I got the dreaded letter that my PCP (primary care physician) was leaving the practice. I went into slight panic mode, because I had been with her for over 7 years. We worked together to build the current health care team I had in place. Now as she headed off to a new opportunity, it was back to the drawing board for me. I was left wondering if I could get lucky twice when it came to choosing a new doctor while living with epilepsy. #### Excerpt: Seizure control is something that took awhile for me to achieve. Almost 6 years to be exact. I knew identifying my triggers were important. I knew taking my medication was important as well. What I didn’t realize was that it would take so much more than that. My doctor (who I love), never really talked to me about other outside factors that could possibly still cause breakthrough seizures. Let me tell you how I went from 15+ seizures a month to 1 to 0. **Related:** [**Whitney asks the hard questions about epilepsy clinical trials**](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/whitney-asks-the-hard-questions-about-epilepsy-clinical-trials.html) In 2013, I was diagnosed for the second time with epilepsy. This time the diagnosis of [Temporal Lobe Epilepsy](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/nov-18-ebr-posts/temporal-lobe-epilepsy-or-tle-experience.html), also known as TLE. [Temporal lobe seizures begin in the temporal lobes of your brain](https://www.mayoclinic.org/diseases-conditions/temporal-lobe-seizure/symptoms-causes/syc-20378214), which process emotions and are important for short-term memory. I had no clue how this would affect my life as I knew it. I didn’t know it would come with horrible side effects from medication. I often felt as if it was more worth it to have the seizure than to deal with the drama of medication trials and errors. **[READ MORE](http://www.cf-epilepsy.com/my-journey-to-seizure-control/)** ![author avatar](https://secure.gravatar.com/avatar/13683cea3a9c0d5cc5a1f85fe87c891b4e8a666374942e9f00d375220d9131da?s=300&d=mm&r=g) Whitney Petit [See Full Bio](https://livingwellwithepilepsy.com/author/cfepilepsy) [ ](https://livingwellwithepilepsy.com/author/cfepilepsy) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://www.twitter.com/cfepilepsy) **Categories:** About Epilepsy, Epilepsy Stories, Jun 21 EBR Posts, Nov 19 EBR Posts, Temporal Lobe Epilepsy --- ### [Every two minutes: A new case of epilepsy is diagnosed](https://livingwellwithepilepsy.com/epilepsy-news-and-research/every-two-minutes-new-case-of-epilepsy.html) **Published:** February 1, 2011 **Author:** Jessica K. Smith **Content:** [![](http://livingwellwithepilepsy.com/wp-content/uploads/blogger/_E8vqQ--lvIQ/TUgxNB0UmhI/AAAAAAAAALc/Vybrm8-G0yQ/s200/every%2Btwo%2Bminutes%2Bepilepsy%2Bis%2Bdiagnosed.jpg)](http://livingwellwithepilepsy.com/wp-content/uploads/blogger/_E8vqQ--lvIQ/TUgxNB0UmhI/AAAAAAAAALc/Vybrm8-G0yQ/s1600/every%2Btwo%2Bminutes%2Bepilepsy%2Bis%2Bdiagnosed.jpg)The [Epilepsy Foundation](http://www.epilepsyfoundation.org/about/statistics.cfm) shows on their site that there are 200,000 cases of epilepsy diagnosed each year (it appears they are referring to the US only). To put this number into perspective, it occured to me that this really amounts to a new case diagnosed every two minutes. **Other Two Minute Facts** Every two minutes … a woman is sexually assaulted a woman dies of cervical cancer a woman is diagnosed with breast cancer **So set your watch** Every two minutes, a person is diagnosed with epilepsy. **More Numbers** Check out our [Epilepsy by the Numbers](http://jessicaksmith.blogspot.com/p/epilepsy-by-numbers.html). I’d love to hear your thoughts on this. Feel free to comment below. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** About Epilepsy, Epilepsy Stories, Newly Diagnosed, News and Research --- ### [Medical marijuana and other epilepsy news](https://livingwellwithepilepsy.com/epilepsy-stories/medical-marijuana-and-other-epilepsy-news.html) **Published:** January 23, 2018 **Author:** Abby Gustus-Alford **Excerpt:** Once a month, I plan to bring to light an incredible news story and how it relates to all of us affected by epilepsy. For starters, just last week in Texas, an organization had its very first harvest of medical marijuana. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/01/P22-289x300.jpg "– Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/livingwell/looking-forward-to-a-fresh-start.html/attachment/p22)Happy New Year everyone! Raise your hand if you set a resolution. Anybody? Yes? No? I have to be completely honest. I did not set a resolution this year. The older I’ve gotten, the more I find myself falling off the resolution bandwagon before I even get started. However, this year I have made a commitment to myself to read more about what is going on in the epilepsy community. I guess, in a way, that is a resolution. Once a month, I’m going to look for (and write about) new cutting-edge research or an incredible news story and how it relates to all of us… the ones reading and the ones affected by epilepsy. #### January Epilepsy News Here is a perfect example. Just last week, in Texas (of all places, that’s where I currently live), [Compassionate Cultivation](https://oneseedtexas.com/) had its first harvest of medical marijuana plants to make a cannabis extract oil for patients. And, in Texas, epilepsy is the only qualifying condition for medical marijuana use. #### Medical Marijuana So, why is this a big deal to me? Well, this is a huge deal for me. [One of my good friends from Galveston needed medical marijuana to treat his epilepsy. About two years ago, just after we became friends, he had to move to Colorado so that he could get cannabis.](http://www.newsweek.com/jeff-sessions-war-pot-goes-court-attorney-general-will-fight-12-year-old-780749) That was the treatment that worked the best for him and we (in Texas) did not have access to it. Now, he will and I’m so thankful. This brings me to my next interesting talking point, though. How does everyone feel about medical marijuana? What are your thoughts? For me personally, while I would love to consider trying that treatment option (because I hate my medicine), it’s not a possibility to try it. We drug test and companies (like mine) are not yet recognizing cannabis extract oil as a legal drug or medical treatment, it’s still considered an illegal drug. I do believe, and it will be interesting to watch, that companies will have to start looking at drug and alcohol policies and reconsidering them to meet updated medical treatment standards. How cool would it be that if by the end of 2018 that was the article I was writing about? So many people were benefiting from CBD oil that new policies were being written to accommodate people living with epilepsy. Okay, maybe I do actually have a goal after all. ![author avatar](https://secure.gravatar.com/avatar/fc6da7355dbaf3b5333da396f069a80e1cb0f14ba7b3b3c9d7276454b2c67b50?s=300&d=mm&r=g) Abby Gustus-Alford Abby Gustus Alford was diagnosed with epilepsy at the age of 12 after multiple grand mal seizures over six-mos. She has a BA from Purdue and her Master’s from Northwestern. [See Full Bio](https://livingwellwithepilepsy.com/author/abby) [ ](https://livingwellwithepilepsy.com/author/abby) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://abbyg_alford) **Categories:** Epilepsy Stories, Treatments **Tags:** CBD, epilepsy, medical marijuana, news, texas --- ### [Epilepsy Blog Relay: Dana is loving life as an epilepsy mom](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-blog-relay-dana-is-loving-life-as-an-epilepsy-mom.html) **Published:** June 20, 2018 **Author:** Jessica K. Smith **Excerpt:** I never expected to be on this journey as an Epilepsy Mom but here I am. **Content:** **[![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/05/danaepilpesyblogimage-300x450.jpg "danaepilpesyblogimage – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/epilepsy-blog-relay-luvn-lambert-life.html/attachment/danaepilpesyblogimage)This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from June 1 to June 30, 2018. Follow along!** #### Dana’s Story [Luv’nLambertLife](https://luvnlambertlife.com/) is a blog about living with Epilepsy, IBHS, homeschooling and so much more. We share our day to day life to help encourage others who walk the same path that we do, so they know they are not alone in this journey. #### An excerpt from Dana’s Story: I never expected to be on this journey as an Epilepsy Mom but here I am. As a Mother awareness and educating others about Epilepsy is important to me. I will share and speak out as often as possible to help others understand this life we live. [READ MORE](https://luvnlambertlife.com/) [Don’t miss her latest post!](https://luvnlambertlife.com/) --- **NEXT UP:** Be sure to check out the next post by Natalie at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com). **TWITTER CHAT:** Save the date for the #LivingWellChat on June 30 at 7PM ET. [![epilepsy blog relay](https://livingwellwithepilepsy.com/wp-content/uploads/2018/05/june-2018-social-EBR1-150x150.png "june 2018 social EBR(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-participants/attachment/june-2018-social-ebr1)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our [generous sponsors and partners](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-sponsors-and-partners)! [Participate as a November Blogger ](http://bit.ly/Nov18EBRForm) [Become a November Sponsor ](http://bit.ly/1819EBRMk) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Stories, Family, Jun 18 EBR Posts --- ### [5 Tips to Live Well with Epilepsy](https://livingwellwithepilepsy.com/epilepsy-blog-relay/5-tips-to-live-well-with-epilepsy.html) **Published:** November 1, 2021 **Author:** Soo Ihm **Excerpt:** Epilepsy is a fact of life and it's our challenge to live with it as best we can. I want to share 5 tips that help me live well with epilepsy. **Content:** [![soo ihm](https://livingwellwithepilepsy.com/wp-content/uploads/2021/10/IMG_1904.jpg "IMG_1904 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2021/10/IMG_1904.jpg)What does it mean to Live Well with Epilepsy? In an ideal world, there would be no epilepsy to worry about. But as it is, epilepsy is a fact of life. It is our challenge to live with it as best we can. Over the years, I have discovered a few tips that help me live well with epilepsy. As a person with epilepsy, I wish I could be seizure-free. That is, I suppose, anyone’s hope in my position. Right now, I am seeing a seizure reduction, but I don’t want to jinx myself by saying I’m on my way! The truth is, I still have short seizures almost daily, and just the other day, I had a big, complex partial seizure at work which incapacitated me. [I could not respond to my coworkers](https://livingwellwithepilepsy.com/2021/personal-epilepsy-stories/on-explaining-epilepsy-to-peers.html). Understanding people and not being able to reply was extremely frustrating. When I finally recovered, I was ready to get back to work but knew better. I had to go home and rest. My mother picked me up and drove me home. My big mistake was that I walked to work. I thought it would be good to get some exercise, and the temperature was in the low 80s. However, the heat was enough to trigger a serious seizure. **So, how do I try to live well with epilepsy? Here are 5 tips you can try to live well with epilepsy.** ### 5 Tips to Live Well with Epilepsy #### 1) Develop a strong support system This can include family members, doctors, support groups, friends – it really doesn’t matter who is on your support team as long as you feel lifted up by all the members of your team. I am very lucky to have all of these. I have been through a lot of ups and downs, and my family, friends, and epilepsy support groups have been there. My doctors have been incredible, trying everything and thinking outside the box. I’ve tried treatments I never thought I would ever try. Now, I have the RNS implant. #### 2) Maintain a regular schedule Living in moderation like this can be difficult especially when you are first diagnosed. But I’ve found it’s worth it in the end. This includes having good eating, sleeping, and [exercising habits](https://livingwellwithepilepsy.com/2019/fitnessandepilepsy/why-its-important-to-exercise-when-living-with-epilepsy.html). It goes without saying that you must take your medications regularly. Every morning and evening at 9:00 I take my meds, and in the evenings I perform my wanding ritual for my [RNS](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/my-journey-with-rns-surgery.html). #### 3) Minimize stress levels as much as possible The pandemic and global politics have shown us that[ keeping stress low](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/6-tips-for-combating-stress-while-living-with-epilepsy.html) is not always possible. But finding ways to manage stress when it comes is an important tool for everyone living with epilepsy. Learning to make use of breathing and meditation techniques can be especially helpful. I always do a morning meditation when I wake up. It refreshes me, and gives me hope for a seizure-free day (until I have one later in the day). Breathing in itself is very important to keep yourself centered and not to get caught up and react automatically to negative stimuli. I have to remind myself of this. I also find that if I feel an aura, often I can stop a full-blown seizure from coming by consciously breathing, taking a big inhale and exhale. #### 4) Slow down This goes hand in hand with breathing and meditation and with life in moderation. Since you are slowing down, you are doing things purposefully and not automatically. However taking things slower than you would prefer can be frustrating and annoying. Be patient with yourself, learn the limitations of your body, and try to adjust so you can better listen when your body is saying “STOP.” #### 5) Play relaxing music This is one thing I cannot do without. Whether it is listening to the radio, a CD, or playing the piano myself, music is very soothing. This doesn’t have to be classical music. If 80s rap, 40s jazz, or 60s French pop chills mellows you out, then have at it. #### Finding gratitude So, right now I am not expecting seizure freedom. Rather, I am taking it one day at a time, trying to remain aware of my triggers and hoping that I don’t have a seizure. But if, and when I do have a seizure, that’s how it goes. Despite having seizures, [I have much to be thankful for.](https://livingwellwithepilepsy.com/2021/personal-epilepsy-stories/in-gratitude-for-my-epilepsy.html) My support system really makes the whole thing work. I am able to live well with epilepsy by following a regular daily schedule and lower my stress level. I hope others can do the same. Soo Ihm lives in Southern California and writes [Soo’s Epilepsy Corner](https://soosepilepsycorner.blogspot.com/) to educate and tell her personal story. ![author avatar](https://secure.gravatar.com/avatar/d52fbb50f14201cb1c4aa52292adb331e89b5086a1db0c1711fed2af943b5367?s=300&d=mm&r=g) Soo Ihm Soo writes the blog Soo’s Epilepsy Corner and is a regular contributor to Living Well With Epilepsy. She lives in Orange County, California. She enjoys traveling, and has been to Europe three times. Her next journey will be just as interesting, with the RNS. [See Full Bio](https://livingwellwithepilepsy.com/author/sooihm) [ ](https://livingwellwithepilepsy.com/author/sooihm) **Categories:** Epilepsy Blog Relay, Epilepsy Wellness, Life With Epilepsy, Nov 21 EBR Posts --- ### [Epilepsy Blog Relay: Would you date someone with epilepsy?](https://livingwellwithepilepsy.com/epilepsy-stories/would-you-date-someone-with-epilepsy.html) **Published:** April 21, 2022 **Author:** Jessica K. Smith **Excerpt:** Personally I'm grateful on so many levels that I'm not dating anymore. If I had to start again it would be bad. Mainly because I'm super awkward. **Content:** Personally I’m grateful on soooo many levels that I’m not dating anymore. My amazing husband and I have been married 20+ years, and gawd if I had to start again–oof it would be bad. Not just because of the epilepsy and the cancer but because I’m generally super awkward. [via GIPHY](https://giphy.com/gifs/awkward-confession-embarrassed-zE3Kq66OEF85O)(BTW I write this as I sit here watching my fave repeat movie “The Other Woman” featuring, Leslie Mann and Cameron Diaz) I do tend to defend how funny I am even to my husband and daughter… Like I said, super awkward, and nothing to do with the epilepsy. [via GIPHY](https://giphy.com/gifs/this-is-40-leslie-mann-keaxYUhihiYPS)#### Twitterverse on Dating and Epilepsy Recently [@BrainAblaze](https://twitter.com/BrainAblaze/status/1516167686941683713) put the question out to twitter to ask whether or not [twitter readers would date a person with epilepsy](https://twitter.com/BrainAblaze/status/1516167686941683713) or who has seizures. I’ve embedded the responses below and I encourage you to take a look, despite my innate awkwardness and my possible questionable taste in movies. > Would you date a person with [\#Epilepsy](https://twitter.com/hashtag/Epilepsy?src=hash&ref_src=twsrc%5Etfw) or who has [\#seizures](https://twitter.com/hashtag/seizures?src=hash&ref_src=twsrc%5Etfw)? [\#EpilepsyAwareness](https://twitter.com/hashtag/EpilepsyAwareness?src=hash&ref_src=twsrc%5Etfw) [pic.twitter.com/JX1QHjBJjF](https://t.co/JX1QHjBJjF) > > > > — Brain Ablaze (@BrainAblaze) [April 18, 2022](https://twitter.com/BrainAblaze/status/1516167686941683713?ref_src=twsrc%5Etfw) #### So would you? Date someone with epilepsy? I would encourage you to put the question out to friends and colleagues. Then comment here or on social media when you hear back. We’re all curious to hear. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Apr 22 EBR Posts, Epilepsy Blog Relay, Epilepsy Stories, Epilepsy Wellness, Life With Epilepsy --- ### [Epilepsy Coaching is Now Available for Free](https://livingwellwithepilepsy.com/epilepsy-coach/epilepsy-coaching-is-now-available-for-free.html) **Published:** February 18, 2025 **Author:** Jessica K. Smith **Excerpt:** Living Well With Epilepsy can now provide FREE Epilepsy Coaching sessions to 120 people in 2025. There is still time to register to reserve your spot. **Content:** ## [![epilepsy health coach](https://livingwellwithepilepsy.com/wp-content/uploads/2023/04/what-is-an-epilepsy-coach.png "what is an epilepsy coach – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-health-coach-programs/attachment/what-is-an-epilepsy-coach)Free Epilepsy Coaching I am thrilled to announce that Living Well With Epilepsy has received funding from [Epilepsy Wellness Advocates and the Charles L. Shor Foundation](https://epilepsywellness.com/) which will allow me to provide 4 FREE Epilepsy Coaching sessions to 120 people in 2025. ### This service is completely FREE of charge to you. [REGISTER TO GET STARTED ](https://forms.gle/Egn26MeVzFvJ6btu9) Over the past three years Living Well With Epilepsy has been working to establish Epilepsy Coaching as an important resource to the epilepsy community. And now, thanks to the team at [Epilepsy Wellness Advocates and the Charles L. Shor Foundation](https://epilepsywellness.com/) we are able to bring you 4 sessions each free of charge. You will find details on the program below. But first let’s hear from some people who have found value in the coaching: ## Testimonials “*My life has completely changed in ways I never could have imagined. The key is whether you make this a positive change or not…This is actually what led me to Jessica. I need her to help me be the best person I can be and to learn more about my disease. Sometimes just knowing I’m not alone is all I need and that is the greatest epilepsy lesson of them all.*” – Dan N. ”*Working with Jessica as my epilepsy coach has been such a tremendous help. A life-line, in fact. Epilepsy is not dictating my life but it is in the back of my mind pretty much all the time. My therapist (yes, I have one of those too) reminds me that if I was taking care of a baby, of course, I wouldn’t let them get hungry, tired, hot or stressed. I would take care of them with love and care. And that is what I am learning to do for myself.*” – Judi C. ## **Program Fee** The fee is $0. ## **Eligibility Requirements** - Must be living with epilepsy OR caring for someone with epilepsy - Must be 18 or older - Must be living in the United States [REGISTER TO SECURE YOUR SPOT ](https://forms.gle/Egn26MeVzFvJ6btu9) ## **What you receive** - One 30 minute introductory call to learn more about the program. - Four 60 minute 1:1 coaching calls to work on goals with a DBT-informed coach (me!) who is also a person living with epilepsy. - The opportunity to work with someone who gets it and has lived with epilepsy for 4 decades - You will be fully tapped into my network of resources Each session will be conducted via zoom. ## **Your Committment** - Schedule an introductory call - Complete a Pre-Coaching Survey After your initial 30 minute discovery session you will be sent a link to a “Pre-Coaching” survey. You will need to complete this before your first coaching session. This will take just 5 minutes and the information gathered will be used anonymously to create a report for the foundation. My hope is to show the importance of the coaching so this can be offered to even more people. - Complete a Post-Coaching Survey At your last coaching session you will be asked to complete a “Post-Coaching” survey. Again this will take just 5 minutes and the information gathered will be used anonymously to create a report for the foundation. [REGISTER TODAY ](https://forms.gle/Egn26MeVzFvJ6btu9) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Coach --- ### [Recharge Your Batteries: Make Time for Joy](https://livingwellwithepilepsy.com/life-with-epilepsy/mentalhealth/recharge-your-batteries-make-time-for-joy.html) **Published:** November 24, 2024 **Author:** Jessica K. Smith **Excerpt:** Dialectical Behavior Therapy (DBT) reminds us to recharge our emotional batteries and make time for joy. This can be especially important during the holidays. **Content:** ## [![Recharge Your Batteries: Make Time for Joy](https://livingwellwithepilepsy.com/wp-content/uploads/2024/07/35-1024x1024.jpg "Make time for joy – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/35)Make Time for Joy In the spirit of gratitude and giving thanks, I thought I would take a page from the old Dialectical Behavior Therapy (DBT) skill playbook that reminds us to recharge our emotional batteries and make time for joy. This is particularly important during the holidays which can be stressful for some of us. In fact, making time for joy is a vital [Dialectical Behavior Therapy (DBT)](https://livingwellwithepilepsy.com/mentalhealth/what-is-dbt.html "What is Dialectical Behavioral Therapy or DBT ?") skill that helps recharge your emotional batteries and enhance your well-being. Activities that bring you happiness and fulfillment provide emotional nourishment, which is crucial for managing epilepsy. By prioritizing joy, you will begin to reduce stress and promote a positive outlook on life. ## Why Does it Matter Incorporating joyful activities into your routine is essential for several reasons: - Emotional Nourishment: Joyful activities provide emotional nourishment, helping you maintain a positive outlook and emotional balance. - Stress Reduction: Engaging in activities that bring you joy reduces stress and promotes relaxation, which can help prevent seizures triggered by stress. - Enhanced Well-Being: Making time for joy enhances your overall well-being, contributing to a happier and more fulfilling life. - Emotional Resilience: Joyful moments build [emotional resilience](https://livingwellwithepilepsy.com/mentalhealth/calm-your-nervous-system-with-the-4-7-8-breathing-technique.html "Calm Your Nervous System with the 4-7-8 Breathing Technique"), allowing you to cope with challenges more effectively. ## A Few Ideas to Bring Joy Here are some activities that can bring joy and fulfillment into your life: - **Hobbies:** Pursue hobbies that you are passionate about, such as painting, gardening, reading, or playing a musical instrument. Hobbies provide a sense of purpose and enjoyment. - Personally I am a big fan of grandma hobbies: crocheting, gardening, cooking - **Spending Time with Loved Ones:** Quality time with family and friends strengthens social connections and provides emotional support. Engage in activities you enjoy together, such as cooking, playing games, or going for walks. - **Enjoying Nature:** Spend time outdoors and connect with nature. Activities such as hiking, picnicking, or simply sitting in a park can provide a sense of peace and joy. - **Creative Expression:** Engage in creative activities such as writing, drawing, or crafting. Creative expression allows you to explore your feelings and express yourself in a meaningful way. - **Mindfulness Practices:** Practice [mindfulness](https://livingwellwithepilepsy.com/mentalhealth/dbt-where-neurology-meets-mindfulness.html "DBT: Where Neurology Meets Mindfulness") techniques such as meditation, deep breathing, or yoga. Mindfulness helps you stay present and appreciate the joyful moments in life. - This is another big one for me! ## Make Joy Easy! To benefit from joyful activities, incorporate them into your daily routine. Make it easy or you won’t do it. **Write it down:** Make a short list of activities that bring you INSTANT happiness. For me, that can be watering my garden, buying seeds, buying or just shopping for yarn. **Stay Present:** Practice mindfulness to stay present and fully engage in joyful activities. (don’t half ass it – and it shouldn’t take forever – just a quick hit of dopamine.) **Celebrate Small Wins:** Acknowledge and celebrate the small joyful moments in your day. If you find yourself doing something positive give yourself a little pat on the back. It counts!!! ## Squeezing out Pockets of Joy Making time for joy is a vital DBT skill that helps recharge your emotional batteries and enhance your well-being. Activities that bring you happiness and fulfillment provide emotional nourishment, which is crucial for managing epilepsy. Start incorporating joyful moments into your routine by prioritizing activities that bring you joy, creating a joy list, and staying present during these activities. Enhance your overall quality of life by making time for joy and reducing stress. Take proactive steps to recharge your batteries and promote a positive outlook on life through the practice of joyful activities. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Wellness, Mental Health **Tags:** #epilepsycoach --- ### [CURE Epilepsy Hosts Event to Kick Off Epilepsy Awareness Month](https://livingwellwithepilepsy.com/partner/cure-epilepsy-hosts-event-to-kick-off-epilepsy-awareness-month.html) **Published:** November 4, 2024 **Author:** Jessica K. Smith **Content:** [![cure epilepsy manhattan event](https://livingwellwithepilepsy.com/wp-content/uploads/2024/11/Screen-Shot-2024-11-03-at-54853-PM-1024x731.png "Cure epilepsy manhattan event – Living Well With Epilepsy")](https://give.cureepilepsy.org/event/cure-epilepsy-takes-manhattan/e611723) The CURE Epilepsy team has invited me to share info on a [fundraising event](https://give.cureepilepsy.org/event/cure-epilepsy-takes-manhattan/e611723?_gl=1*l03btv*_gcl_au*NTYwNzM4ODMyLjE3MjI4ODI2Njk.*_ga*MTE2Njk0OTA1MS4xNzAxMTg5NzM1*_ga_RY6XNSGE6E*MTcyODY3MzExOC40NjYuMC4xNzI4NjczMTE4LjYwLjAuMA..) they are hosting in NYC in honor of Epilepsy Awareness Month. This unique event will feature famous soprano Renée Fleming in conversation with a neurologist, a music therapist, and our immediate past board chair Kelly Cervantes about the intersection of the arts and neuroscience, specifically epilepsy. If you are in the NYC area this promises to be a very interesting evening and as always with CURE the money goes directly to support epilepsy research. Happy to answer any questions you might have and/or provide additional promotional materials. ## CURE Epilepsy Hosts a Conversation with Renée Fleming [Renée Fleming](http://www.reneefleming.com/) is one of the most acclaimed singers of our time, performing on the stages of the world’s greatest opera houses and concert halls. Honored with five Grammy® awards and the US National Medal of Arts, she has sung for momentous occasions from the Nobel Peace Prize ceremony to the Super Bowl. Renée’s current concert calendar includes appearances in London, Milan, Paris, and at Carnegie Hall. In November, she starred in the world premiere staging of *The Hours*, a new opera based on the Pulitzer Prize-winning novel and award-winning film, at the Metropolitan Opera. She won the 2023 Grammy Award for Best Classical Vocal Solo Album for *Voice of Nature: the Anthropocene*. A leading advocate for research at the intersection of arts and health, Renée launched the first ongoing collaboration between The Kennedy Center for the Performing Arts and the NIH. She is a founding advisor for the Sound Health Network at UCSF. ## Discussion with Kelly Cervantes Kelly Cervantes is an award-winning writer, speaker, and advocate best known for her blog Inchstones, where she shared the stress, love, and joy that came with parenting her medically complex daughter, Adelaide. Since Adelaide’s passing, just five days shy of her fourth birthday in October of 2019, Kelly has continued to write candidly about her arduous and, at times, contradictory grief journey. Her debut book, *Normal Broken: The Grief Companion for When it’s Time to Heal But You’re Not Sure You Want to* is a USA Today Bestseller and is available everywhere books are sold. She has been published in the Chicago Tribune, the Chicago Sun-Times, and Cosmopolitan, as well as quoted in the New York Times, CNN, and People. She is the former board chair for the nonprofit [CURE Epilepsy](https://www.cureepilepsy.org/) and also hosts their biweekly podcast, [Seizing Life](https://www.youtube.com/playlist?list=PL6gG1QgDIYVPXE6z6WGKbrCN57aO2G2Df), where she interviews scientists, doctors, and individuals affected by epilepsy. Kelly resides in Maplewood, NJ, with her husband, Miguel Cervantes former star of *Hamilton* on Broadway, their children, and two dogs, Tabasco and Sriracha. [FOR MORE INFO ON THE EVENT ](https://give.cureepilepsy.org/event/cure-epilepsy-takes-manhattan/e611723) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Partner --- ### [Morgans Epilepsy Story: Living with Temporal Lobe Epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/an-epilepsy-story-living-with-tle.html) **Published:** September 22, 2012 **Author:** Jessica K. Smith **Content:** ## [![](https://livingwellwithepilepsy.com/wp-content/uploads/2012/09/seniorpic1.jpg "seniorpic1 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2012/09/seniorpic1.jpg)Morgan’s Epilepsy Story *Morgan shares her epilepsy story about living with Temporal lobe epilepsy. Morgan’s epilepsy story was first published on the site in 2012* When I was 15 months old, I had my first seizure. I had been sick and running a very high fever. According to my mom and my dad, I had a febrile seizure that lasted for 90 minutes. Three months later, I was hospitalized again due to another seizure. Originally, I was diagnosed with tuberous sclerosis complex, because of what appeared to be an ash leaf spot on my stomach and MRIs showed a tumor in my brain. My mother was told that I would likely be mentally disabled. ## Scary Sensations When I was eight years old, I started to have more seizures. I remember my first seizure very clearly. It started as a strange feeling, like I was in a situation never seen to me before, and it grew into a terrifying situation. I no longer saw, smelled, heard, or felt the world around me but rather I saw a skeleton in the attic of my mother’s house. It was like watching a horror movie. I began having more sensations similar to this for the next year, and it wasn’t discovered until I was nine that I had been having seizures. My fourth grade teacher assigned a family tree project, and I was in the middle of presenting my family tree to my fourth grade class. Then the funny feeling came again, and the classroom wasn’t there anymore. Later that year, my mother took me to see my pediatric neurologist from when I was a baby, and my neurologist told me I was having complex partial seizures. I was prescribed Tegretol to begin with, and then for the next several years my medication was adjusted several times, and I became unresponsive to many medications I was prescribed. I remember taking as much as 1200 mg of medication a day. ## Epilepsy Story Goes Public If you’ve ever had a seizure in public, I suppose it might be easy for you to understand how school was for me. I was having seizures on a weekly basis, and on more than one occasion did I come out of a seizure to find that I had wet my pants. It was humiliating, degrading, embarrassing… any synonym you can think of for that. I had anxiety about having a seizure in public. To be perfectly honest with you, I would absolutely blame the reason for my being bullied in middle school and high school on my epilepsy. I couldn’t do a lot of things that “normal” kids could do. I couldn’t go to a lot of haunted houses (because of the strobe lights), I couldn’t swim by myself, I couldn’t get my drivers license until I was nearly 18, I couldn’t play a lot of video games because of photosensitivity, and I always felt like I was more or less a broken person. ## Epilepsy Surgery Opens Possibilities When I was fifteen years old, my doctor told me about the possibilities of epilepsy surgery. She had just taken me off of my latest medication, which was poisoning me due to a bad reaction with another anti-convulsant medication I had been on. She told me that in the St. Louis Children’s hospital, there was a very good neurosurgeon and that she had sent more than one patient down to St. Louis to get the surgery to help stop seizures. I went to meet with this doctor later that year, and after several tests and days of observing my seizures and normal brain activity, he located the place in my brain where my seizures were coming from and scheduled me for surgery after my sixteenth birthday. The events of the surgery are fuzzy to me, but I remember that they took out scar tissue on my right temporal lobe. When I was recovering, my doctor told me that I did not have TSC. He said that I was misdiagnosed when I was young, and he then diagnosed me with temporal lobe epilepsy. ## Two steps forward I was seizure free for almost two years after the surgery. Unfortunately due to severe depression my senior year of high school, I completely stopped taking my medication for several months. On my 18th birthday, I woke up in the emergency room from having a grand mal seizure. It was the second grand mal seizure I’ve ever had, so I felt terribly sore afterward. Ever since then any seizure I have had has been in my sleep. I have had about four seizures since then (so within the past two years I have had four). My last seizure was in February of this year, so I am currently able to drive again. ## Epilepsy Diagnosis to Pre-Med Because of my epilepsy, I changed my major my freshman year of college to pre-med. I decided that I wanted to be a neurologist to help children and teenagers struggling with epilepsy. This past semester, I have changed my major again to microbiology with a neuroscience minor so that I can do neuroscience research to further the progress of treatment for epilepsy. Last year, after being inspired by our local [To Write Love On Her Arms uChapter](http://www.twloha.com/index.php), I contacted one of my neuroscience professors to help me create a group for epilepsy awareness. I am trying to organize events on my campus to raise money for neurological research foundations and raising awareness of epilepsy on campus as well as teaching people what to do in case of a seizure. I now guest lecture for that same professor every semester for the unit in her class on seizure disorders. I enjoy being able to talk to students my age (who also know a lot about brain anatomy because of her class), and I feel like I am making a difference in how those students perceive epilepsy. My biggest challenge now is to just keep the group going, and I am sure it will be going strong even after I graduate because every semester I am getting more new members. They are people who have epilepsy, have loved ones with epilepsy, or are people who want to help reduce the stigma surrounding people with seizures. And on the bit about my doctors telling me I would have learning disabilities — I am an A-B biology student at an accredited university with a 3.8 GPA, and a part of three different honor societies. I couldn’t be more proud of myself now. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Stories, Photosensitive Epilepsy --- ### [Epilepsy Blog Relay™: Melanie Griffith on living with epilepsy](https://livingwellwithepilepsy.com/epilepsy-blog-relay/melanie-griffith-living-with-epilepsy.html) **Published:** November 1, 2017 **Author:** Abby Gustus-Alford **Excerpt:** I am not going to lie. I was absolutely shocked when my Twitter feed blew that Actress Melanie Griffith had revealed she too was battling epilepsy. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/01/P22-289x300.jpg "– Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/livingwell/looking-forward-to-a-fresh-start.html/attachment/p22)**Abby Gustus-Alford, a regular contributor on Living Well With Epilepsy, has submitted this post on the recent news of Melanie Griffith’s announcement that she is living with epilepsy. This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from Nov. 1 to Nov. 30, 2017. Follow along!** #### Abby’s Story I am not going to lie. I was absolutely shocked when my Twitter feed blew up with Tweets about [Actress Melanie Griffith](http://www.imdb.com/name/nm0000429/), while on a panel for Women’s Brain Health Initiative, revealed she too was battling epilepsy. I wanted to run up to her and give her a hug. Then, I got online to read about it. Turns out, she recalled two seizures in her public appearance that happened in 2011. 2011! Wow! I wanted to run up and give her another hug! Don’t worry… I won’t, but what I will say here is, thank you. Thank you Melanie Griffith for being brave enough to talk about your epilepsy battle publicly. I also want to say to her, stress brings on seizures for me, too! And, it’s really annoying! I wish it didn’t, but it does… I can almost tell when my stress level is going to cause a seizure. #### Talk about it But, more importantly, what does Melanie Griffith talking about her battle with epilepsy hopefully do? My hope is that it gives people the courage that they, too, can “Talk About It”… just like our friend Actor [Greg Grunberg](http://www.imdb.com/name/nm0342399/) always says. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/10/TalkAboutItorg_Logo_Outlined.jpg "TalkAboutItorg_Logo_Outlined – Living Well With Epilepsy")](http://talkaboutit.org/)In 2016, [Greg](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/greg-gets-creative-with-family-time.html), who has a son with epilepsy, started [TalkAboutIt.org](http://talkaboutit.org/) in partnership with the Epilepsy Foundation. The whole premise of that campaign is to raise awareness and help destigmatize epilepsy. Greg said, and this really stuck with me personally, “Acceptance and understanding replaces ignorance and fear. Everyone needs to talk about it.” #### Thank you, Melanie It’s true. And, in my opinion, Melanie Griffith recently revealing she has epilepsy and has been battling it for a long time is going to help a lot of people. My hope is that this gives more people the courage to come out and “Talk About It” and the stigma that I always feel when talking about my situation starts to disappear. Oh, and my dream… while we are talking about hopes and dreams… is that the publicity *might* raise awareness and raise money for research that *might* lead to a cure! Just sayin’! So, thank you Melanie! And, thank you Greg! For telling your stories. By the way, Melanie, if you ever read this… Greg recently declared you his #MyEpilepsyHero on Twitter! --- **NEXT UP:** Be sure to check out the next post tomorrow by [Dr. Angus A. Wilfong, MD](http://barrow.phoenixchildrens.org/angus-a-wilfong-md-division-neurology), at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/). For the full schedule of bloggers visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). **TWITTER CHAT:** And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fc6da7355dbaf3b5333da396f069a80e1cb0f14ba7b3b3c9d7276454b2c67b50?s=300&d=mm&r=g) Abby Gustus-Alford Abby Gustus Alford was diagnosed with epilepsy at the age of 12 after multiple grand mal seizures over six-mos. She has a BA from Purdue and her Master’s from Northwestern. [See Full Bio](https://livingwellwithepilepsy.com/author/abby) [ ](https://livingwellwithepilepsy.com/author/abby) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://abbyg_alford) **Categories:** Epilepsy Blog Relay, Nov 17 EBR Posts **Tags:** Epilepsy Blog Relay, Melanie Griffith, MyEpilepsyHero, Talk About It --- ### [Epilepsy Blog Relay™: Gemma on life with epilepsy](https://livingwellwithepilepsy.com/epilepsy-blog-relay/gemma-on-life-with-epilepsy.html) **Published:** November 4, 2017 **Author:** Guest Contributor **Excerpt:** Today’s post comes from Gemma Jordan, who writes about her life with epilepsy on her blog, fab-younique.com. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/08/me-1-300x300.jpg "me – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/personal-epilepsy-stories/gemmas-story-time-for-a-change.html/attachment/me-5)Day 4 of the Epilepsy Blog Relay™ Today’s post comes from Gemma Jordan, who writes about her life with epilepsy on her blog, [fab-younique.com](https://www.fab-younique.com/blog). Gemma’s site includes tips and tricks on living with epilepsy written from a personal perspective. [Read Gemma’s Post ](https://www.fab-younique.com/blog) --- **NEXT UP:** Be sure to check out the next post tomorrow by Gina Moses. For the full schedule of bloggers visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). **TWITTER CHAT:** And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, Nov 17 EBR Posts **Tags:** Epilepsy Blog Relay --- ### [Epilepsy Blog Relay™: Hadley Jo and Ariel](https://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-hadley-jo-ariel.html) **Published:** November 7, 2017 **Author:** Guest Contributor **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/10/FullSizeRender2-e1509498610684.jpg "FullSizeRender(2) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/epilepsy-blog-relay-hadley-jo-ariel.html/attachment/fullsizerender2)**This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from Nov. 1 to Nov. 30, 2017. Follow along!** #### Hadley Jo’s Story Hadley Jo (4) was diagnosed at age 2 with cryptogenic localization related epilepsy. According to the journal, *Epilepsy & Behavior*, up to one-third of children with epilepsy are diagnosed with cryptogenic localization-related epilepsy (CLRE), just like Hadley Jo (HJ). #### A service dog to the rescue Soon after HJ’s diagnosis, a stranger’s service dog responded to her seizures on two different occasions. Needless to say the family’s search for a service dog started that day! HJ service dog, “Ariel” (chocolate small standard labradoodle) came home around Halloween in 2016 and the two have been bonding every since. Ultimate Canine (private organization who bred and trained Ariel) told HJ’s family that due to her age, bonding could take a year or longer. They have shared that in the month of October, HJ’s had two grand mal seizures within two weeks of each other. Thankfully, Ariel alerted HJ’s teachers prior to the seizures. HJ’s teachers were able to administer her rescue medication within two minutes of the onset of the seizure STOPPING the seizure. HJ’s mom believes “Ariel” is saving our daughter’s life and the family is forever grateful. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/10/FullSizeRender5.jpg "FullSizeRender(5) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/nov-17-ebr-posts/epilepsy-blog-relay-hadley-jo-ariel.html/attachment/fullsizerender5) In 2017, Hadley Jo’s family started the HOPEFORHADLEYJO project, funding service dogs for other children with epilepsy through their purple dog “beaux ties”. The family’s non profit project is affiliated with the Kentucky Epilepsy Foundation and they aim to help save other’s lives! For more on Hadley Jo and the HOPEFORHADLEYJO Project click the button below: [Learn More ](https://www.beauxtied.com/pages/hope-for-hadley-jo-project) --- **NEXT UP:** Be sure to check out the next post tomorrow at . For the full schedule of bloggers visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). **TWITTER CHAT:** And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, Grand Mal / Tonic Clonic, Nov 17 EBR Posts --- ### [Epilepsy Blog Relay™: Lainie on epilepsy and embarrasment](https://livingwellwithepilepsy.com/epilepsy-blog-relay/lainie-on-epilepsy-and-embarrasment.html) **Published:** November 8, 2017 **Author:** Lainie Chait **Excerpt:** Embarrassment and isolation are things we get used to feeling when we are dealing day to day with the realities of living with a sparky brain. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/11/810beb4f4db79e1689c08f08674c2831_original-e1509830695308-300x248.jpg "810beb4f4db79e1689c08f08674c2831_original – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/featured/lainie-on-epilepsy-and-embarrasment.html/attachment/810beb4f4db79e1689c08f08674c2831_original)***This post is part of the Epilepsy Blog Relay™, which will run from Nov. 1 to Nov. 30, 2017. Follow along!*** #### Lainie on embarrasment Hiding, embarrassment and isolation are things we get used to feeling and doing when we are dealing day to day with the realities of living with a sparky brain. It’s not the same for everyone though as all of us that are afflicted by epilepsy, have our own degrees of feelings surrounding these things. In my case, I let two of these things overpower me and convinced myself that hiding and being embarrassed was the best solution to adopt in order for me to just blend in with the crowd and be “normal”. What I didn’t take into account was, that by hiding myself, my seizures and my feelings about what I was going through, I was adding to the problem we face in society around the lack of education amongst the general public about what to do and more often than not, what not to do when you are dealing with someone that has seizures. [READ MORE ](http://electrogirl.com.au/electric-blogs/) --- **NEXT UP:** Be sure to check out the next post tomorrow by Emily Donoghue on [livingwellwithepilepsy.com ](https://livingwellwithepilepsy.com). For the full schedule of bloggers visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). **TWITTER CHAT:** And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/6741f205abb236e76a0cbb8b5f2273ea5186a2e0f7714f7742a457fe0a89a5d0?s=300&d=mm&r=g) Lainie Chait [See Full Bio](https://livingwellwithepilepsy.com/author/lainie) [ ](https://livingwellwithepilepsy.com/author/lainie) **Categories:** Epilepsy Blog Relay, Nov 17 EBR Posts --- ### [Seizures, pregnancy and epilepsy in real life](https://livingwellwithepilepsy.com/epilepsy-stories/seizures-pregnancy-and-epilepsy-in-real-life.html) **Published:** March 19, 2019 **Author:** Jamie Wissinger **Excerpt:** Jamie shares a story about her experience with seizures, pregnancy and epilepsy. **Content:** ## ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/02/32637208_10104437952863837_3544336493038272512_n-300x225.jpg "32637208_10104437952863837_3544336493038272512_n – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/seizures-pregnancy-and-epilepsy-in-real-life.html/attachment/32637208_10104437952863837_3544336493038272512_n)*Jamie’s Story** I want to share a story about my experience with pregnancy and epilepsy. I have three children, ages 12, 4, and 2. I call this stage “toddlers and teenagers”… maybe one day I will write a book! ## Seizure during pregnancy I’ve had Epilepsy my entire life. However, I went 17 years seizure free, so doctors thought I outgrew it. Needless to say, when I was 21 and pregnant, I didn’t share that information with anyone. I had a breakthrough seizure when I was 3 months pregnant, and life as I knew it changed. I lost my job, I gained more weight than I should have because of the medicine, I couldn’t drive…. it was mentally an awful time in my life. However, I took my medicine like a good girl, was able to hitch rides my senior year of college and graduate with a Bachelor’s degree a few months later… and later maintained seizure “freedom” for 5 years. --- **Related:** [**Paula’s Story: Sage advice from a mom with epilepsy**](https://livingwellwithepilepsy.com/2015/parenting/paulas-story-mom-with-epilepsy.html) --- ## Life in progress In 2011, I started a blog that was about my running evolution, life as a single mom, and my journey with epilepsy when it reared its ugly head again with cluster seizures. At the time I was off medicine again, since it had been a substantial amount of time in between seizures. My neurologist prescribed medication again and I was to not give myself permission to take myself off it unless I had a doctor’s approval. Fast forward to 2014, another seizure when pregnant with my second child. I had previously argued with my doctor about not needing to proactively take a [Class D medicine](https://americanpregnancy.org/medication/medication-and-pregnancy/) that could potentially harm my unborn child. I thought I had it all under control. --- **Related: [Tips to feel less isolated and alone after an epilepsy diagnosis](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/tips-to-feel-less-isolated-and-alone-after-an-epilepsy-diagnosis.html)** --- ## Time for us to speak up At the time I was going through a nasty situation where my seizure disorder was being used against me. Seizures are still so taboo and people are uneducated about epilepsy. It’s not the fault of people not affected – as a community, we just don’t talk about it. Or when we do… it is a never-ending re-posting of the same statistics, same ‘celebrities’ that have this disorder as well, or the same negativity that surrounds our life’s from having restrictions (Not driving, medicine side effects, feeling isolated). Thankfully I had a strong education and knew how to advocate for myself, and an amazing support team, so everything unfolded the way it was supposed to. --- **Related:** [**Epilepsy Blog Relay: Ways to help with medication costs**](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/epilepsy-blog-relay-ways-to-help-with-medication-costs.html) --- ## The right doctor makes all the difference In 2015, I was pregnant with my third child and decided to continue my medicine but find the RIGHT doctor who would walk with me through this pregnancy journey. I sure did, and still see him every year. This pregnancy was seizure free, and I have been seizure free for over 5 years. My doctor scheduled monthly lab-work, monthly EEGs, and took excellent care of me while collaborating with my OBGYN to give me the best care. I was honestly worried about having a seizure during that pregnancy, since it happened with my other two… but it goes to show that if you have the right medical care, amazing things can happen. You cannot control everything, but having superheroes in your corner will encourage you that you CAN have children with Epilepsy. ## Becoming mom with epilepsy If you want to have children, I encourage you do find the right doctor. Listen to them. Take their advice seriously and know that they have your best interest in mind. Seizures suck, but your medical care doesn’t have too ![author avatar](https://secure.gravatar.com/avatar/43219f821cdcb707861d4c5d783f913a94991267fb94c4c92bbab48ec46b45b8?s=300&d=mm&r=g) Jamie Wissinger [See Full Bio](https://livingwellwithepilepsy.com/author/jmes717) [ ](https://livingwellwithepilepsy.com/author/jmes717) **Categories:** About Epilepsy, Epilepsy Stories, Epilepsy Wellness, Family, Mar 19 EBR Posts, Pregnancy, Side Effects, Women and Epilepsy **Tags:** mom with epilepsy, pregnancy and epilepsy, seizures and pregnancy --- ### [Epilepsy and Pregnancy - what to expect](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-and-pregnancy-what-to-expect.html) **Published:** July 23, 2021 **Author:** Abby Gustus-Alford **Excerpt:** Abby gets honest about her own epilepsy and pregnancy. She wants women to know what to expect when they head into pregnancy with epilepsy. **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/02/4j4b5656-300x200.jpg "4j4b5656 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2021/epilepsy-stories/epilepsy-and-pregnancy-what-to-expect.html/attachment/4j4b5656)*** #### Abby’s Story I’m Abby and have been blogging here at Living Well with Epilepsy for a while. I had a baby, and I am proud to say that I stayed seizure free throughout my pregnancy (I did have some intense auras) but overall I did well. #### Pregnancy and epilepsy That said, there are a few things that I have to say about pregnancy and epilepsy. **One:** it’s hard. It is by far the hardest thing I have ever done in my life for so many reasons, and I’ll get in to those for those of you kind of wanting to know more. **Two:** it’s life changing, for obvious reasons. **Three:** it’s worth it. I do not want to scare anybody with epilepsy away from having a baby when I walk through my experience. First and foremost, know that you are not alone. My ultimate goal is to help educate women with epilepsy and maybe give them a sense of what can be expected and that it will all be okay. Rewind my life to when I was in the thick of pregnancy, I was not so sure. #### Pregnancy is hard (epilepsy makes it a little harder) I never could have imagined what I would go through and for purposes of keeping things simple for a blog post – there were three difficulties I had – morning sickness, severe depression, and pure exhaustion. For starters, I had extreme morning sickness that lasted throughout the day. I was sick in the mornings (hence the name) and then again around 3:30 or 4 p.m. every. single. day. until around 22 weeks. Was getting sick an inconvenience? Absolutely. Do a lot of women have this? Yes. So why is it different for those of us with epilepsy? For starters, I could not keep my medicines down. When I would get sick in the morning, I’d usually lose some of my medicine. Not good, and my levels were dropping. In addition, many women when these symptoms get bad enough, they are able to take an anti-nausea medicine to help them. Well, when it got the absolute worst, I took it, however the anti-nausea medicine safe for women who are pregnant can counteract your epilepsy medication, so you have to take it sparingly. Plus, there are side effects to the baby on that medication and you’ve already got enough side effects to worry about with the epilepsy medication by itself. So, moral of the story, I took the anti-nausea medicine all of twice the entire pregnancy to ensure I did not have a seizure and that my meds stayed in my system. Other than that, all I can say is that I survived it while we continually increased my medication dosage. #### Expect the unexpected Second, for me, the depression was unexpected. This should be the happiest time of your life, right? For me, I believe that the depression came (or got worse) from not feeling well overall and not having enough time to give my body the proper rest it needed. I also am able to look back and know that some of that was because I was absolutely terrified that something would be wrong with the baby because of epilepsy, because of the medicine, because I would have a seizure, etc. My mind was constantly racing about if she was going to be healthy. The last part of feeling down came from the constant changing of my doses. My whole pregnancy, I’d go get my levels checked every two to three weeks and each time, my levels would drop because my body was metabolizing my medicine so fast. By the time my daughter was born, I was on three times my normal dose… also considered a “toxic dosage” as soon as I had her. #### Sleep more if you can Lastly, the exhaustion is overwhelming. It’s overwhelming for anybody. You’ll never meet a pregnant lady who is not totally exhausted. So, I do not want to say that the pure exhaustion is just for those of us with epilepsy. I DO want to say if I had to do it over again, I would work in time for more sleep and rest. I’d figure out a way to get more rest the next time around, because I do think I would have been in better shape all around had I taken a little better care of myself in this regard. All that said (and I’m still exhausted by the way, just in a different way), Emma is the best thing that has ever happened to us. She was three and a half weeks early (so she was a preemie), but so far, she is healthy and doing fantastic! #### Reach out for help If you are thinking of getting pregnant or are already and struggling, please reach out. I had people help me (a BIG THANK YOU to Jess and Maureen) and I want to be there for somebody else and pay it forward. We are all in this together! --- [Share your story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://secure.gravatar.com/avatar/fc6da7355dbaf3b5333da396f069a80e1cb0f14ba7b3b3c9d7276454b2c67b50?s=300&d=mm&r=g) Abby Gustus-Alford Abby Gustus Alford was diagnosed with epilepsy at the age of 12 after multiple grand mal seizures over six-mos. She has a BA from Purdue and her Master’s from Northwestern. [See Full Bio](https://livingwellwithepilepsy.com/author/abby) [ ](https://livingwellwithepilepsy.com/author/abby) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://abbyg_alford) **Categories:** Epilepsy Stories, Epilepsy Wellness, Jun 21 EBR Posts, Pregnancy, Women and Epilepsy **Tags:** epilepsy and pregnancy --- ### [Women and Epilepsy: Brandy Parker inspires moms with epilepsy](https://livingwellwithepilepsy.com/women-epilepsy/pregnancy/brandy-parker-inspires-moms-with-epilepsy.html) **Published:** April 25, 2024 **Author:** Jessica K. Smith **Excerpt:** Women and Epilepsy: In honor of Mother's Day, I spoke to Brandy Parker a delightful mom with epilepsy, and the Executive Director of My Epilepsy Story. **Content:** ## [![brandy-brandy-0055](http://livingwellwithepilepsy.com/wp-content/uploads/2013/05/brandy-brandy-0055-199x300.jpg "brandy-brandy-0055 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2013/05/brandy-brandy-0055.jpg)This post is part of our new series Women and Epilepsy. In honor of Mother’s Day, I reached out to a mom with epilepsy who inspires me. I hoped she would have time in her busy life for a brief interview and of course, she made time. Brandy Parker is not only a delightful mom with epilepsy, she is Executive Director and Founder of [My Epilepsy Story](https://myepilepsystory.org). Below you will hear a bit of her story and what she has going on. I hope you will take the opportunity to get to know her and her work. **Living Well With Epilepsy:** Brandy, would you give everyone a little background on you and your epilepsy? **Brandy Parker:** My name is Brandy Parker and I am a woman living with epilepsy. I am a mother, patient advocate, and Executive Director/Founder of [My Epilepsy Story](https://myepilepsystory.org/). I live in Nashville,TN with my three beautiful children. At the age of 15 I had a tonic-clonic seizure. I was prescribed Depakote and my seizures were stopped. I had some typical side effects from the medication such as hair loss, weight gain, and being tired. Over the years I just learned to cope with the side effects. I had two other seizures over the years from not taking my medication (which was dumb). My seizures were well controlled while taking the Depakote. About 6 1/2 years ago I switched to Keppra to be on a safer medication for being a woman of child bearing years. I have been seizure-free for over 19 years. **LWWE:** What is it like to be a mom with epilepsy? **BP:** Being a mom with epilepsy is just like being a mother without epilepsy. I feel the same emotions as every other mother out there. I am driven to be the best mom that I can be. However, I do worry that I will have a seizure that will cause me to die and leave my children without a mother. I educate my children on epilepsy so they can be prepared if I were to have a seizure. **LWWE:** What made you start [myepilepsystory.org](http://myepilepsystory.org "myepilepsystory.org")?[![brandy-brandy-0030](http://livingwellwithepilepsy.com/wp-content/uploads/2013/05/brandy-brandy-0030-300x199.jpg "brandy-brandy-0030 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2013/05/brandy-brandy-0030.jpg) **BP:** I started My Epilepsy Story to put a face to epilepsy. I am one of the lucky 70% of people with epilepsy that responds to epilepsy treatment. Yet, my life dramatically changed almost 9 years ago after giving birth to my first child. This is when epilepsy began affecting my life on a daily basis. Research now shows that the seizure medication that I was prescribed while pregnant with my first child, can cause your child to have physical and/or cognitive abnormalities. My son Samuel, was diagnosed with being on the autism spectrum. The side effects from MY seizure medication have now been passed to my son. I am now in the group of people with epilepsy that has epilepsy affecting their life on a DAILY basis, even though I am not having seizures. This has made me step up and put my story as another face to epilepsy. My Epilepsy Story is an organization that focuses on women and children living with epilepsy. **LWWE:** Can you talk about your vision for My Epilepsy Story and how it can impact women living with epilepsy? **BP:** My vision for My Epilepsy Story in regards to women living with epilepsy is to educate, advocate, and do research in the area of woman’s health. We also want to have a National Pregnancy Registry that is federally funded for women that have epilepsy and are pregnant. This will help us to make sure that we are addressing the needs of pregnant women living with epilepsy. We also want to make sure that we are educating women about the best medications that are out there for them. My Epilepsy Story wants to help women with epilepsy be their own advocate in regards to their health. Women with epilepsy will have different health needs as they age and we want to make sure they are informed so they can discuss these needs with their doctors. My long term vision is to address these needs globally so that women across the world with epilepsy are getting the best healthcare. **Learn more about the work being done in this space at:** [**https://epilepsypregnancy.com/resources-tools/**](https://epilepsypregnancy.com/resources-tools/) **LWWE:** What would be a perfect Mother’s Day for you? **BP:** The perfect mother’s day for me is to spend the day with my family. I love quiet, but I also enjoy the giggles and laughs from my three beautiful children. I would also love to read the newspaper, read a magazine, or watch a news segment that highlights women with epilepsy and the importance of this issue. Thank you so much for sharing our story on this Mother’s Day. I am proud to be the mother to three beautiful children. I am also glad that mine and Samuel’s story is changing things in this world. He is a world changer! Make sure you go to our [website](http://www.myepilepsystory.org/submit-your-story/) and share your “My Epilepsy Story”! Thank you Brandy, for making time to talk to Living Well With Epilepsy! Have a wonderful Mother’s Day! ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Wellness, Pregnancy, Women and Epilepsy **Tags:** Mother's Day, parenting, women and epilepsy --- ### [Women and Epilepsy: Pregnancy and the Ketogenic Diet](https://livingwellwithepilepsy.com/women-epilepsy/pregnancy/pregnancy-and-the-ketogenic-diet.html) **Published:** April 26, 2024 **Author:** Guest Contributor **Excerpt:** Women and Epilepsy: Becky shares her experience with epilepsy, pregnancy and the ketogenic diet. **Content:** ## [![](https://livingwellwithepilepsy.com/wp-content/uploads/2024/04/pexels-mateusz-feliksik-1896604-13376599-scaled-e1713894158712-1024x821.jpg "pexels-mateusz-feliksik-1896604-13376599 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2024/04/pexels-mateusz-feliksik-1896604-13376599-scaled-e1713894158712.jpg)Women and Epilepsy Series: Becky’s Story Becky shares her experience with epilepsy, pregnancy and the ketogenic diet. I had “dizzy spells” for as long as I can remember but didn’t know what they were. In my early twenties I had one, but this time it involved a large lapse of time that I could not account for. My family prompted me to see a neurologist who diagnosed me with epilepsy (petit mal). I opted not to go on medication at that time. I was newly married and wanted to have children and my doctor was understanding. I continued to have these small seizures (about one every couple of months) and then I became pregnant five years after I married. ## Seizure Control During Pregnancy My OB-Gyn told me “the seizures could stay the same, they could get worse, or they could go away”. Well they did go away! The whole time I was pregnant and nursing my first son I was seizure free. I then immediately became pregnant with my second and again remained seizure free during the entire pregnancy and 11 months of nursing. *DISCLAIMER: This may not be the case for everyone!* ## Search for Seizure Control When my second son was about 3 years old I started having petit mal seizures again (and more frequently than previously), until one day when he was about four, I had my first grand mal. My doctor put me on an anti-seizure medication telling me “we don’t really know if this was a grand mal because it wasn’t witnessed”. > Well I have to tell you, because of that simple statement from my doctor, I was lax on taking my medication. At some point I had another grand mal and it was pretty serious. I suffered a severe concussion that to this day affects my sense of smell, which in turn affects my ability to taste. I also suffered pretty severe vertigo. As a result, I learned my lesson and began taking my anti-seizure medication daily for twelve years relatively side-effect free. Or so I thought. ## Medication Side Effects (and disclosure) Being on these kinds of anti-seizure medications, many of us have to have regular blood tests to check different things from drug levels to liver function, etc. Well, during one of these routine blood tests my doctor found that my white blood counts were very low. Over the course of a year I saw an oncologist and it was determined that the anti-seizure medications damaged my white blood cells. > As the doctor put it – this is a common side effect of my anti-seizure medication. Who knew?! I had never heard this before. However in my subsequent investigation of this medication I found it was true and I would never be able to take that anti-seizure medication again. ## Finding a New Medication On to the worst couple of years of my life. The trials and errors of trying to find another medication to take the place of my first medication. Over the course of about a year and a half I tried at least 4 different medications. All with awful side effects including extreme lethargy (to the point where I couldn’t brush my teeth!), shortness of breath, little to no appetite and to top it off they weren’t controlling my seizures. Then at some point I remember my sister telling me years before that a diet has been used to control epilepsy in children. ## Time for other options I began my investigation into this diet and discovered that adults too have been able to control seizures as well. I contacted Dr. Eric Kossoff at John’s Hopkins Hospital and he told me to get the book that he co-wrote, [“Ketogenic Diets, Treatments for Epilepsy and Other Disorders”](https://amzn.to/3WgGOSm). First off I have to say that being able to pick up the phone and speak to this doctor directly, I mean he’s written books and is an authority, just astounded me. To top it off after I got off the phone with him his nurse called me back to make sure that I got the SEVENTH EDITION of the book because it had the most current information of the Modified Atkins Diet. I saw my neurologist to let him know this was the course I was taking. He gave me a sheet of paper that essentially had a Paleo diet layout on it. He admitted that he didn’t know much about the diet and said he would stand behind me in my endeavors but that he didn’t want to see me coming in looking all gaunt and thin. I weighed 134 when I started and lost about 10 pounds to 124 and have maintained this weight throughout. ## Ketogenic Diet I began the Ketogenic Diet in September, and was totally weaned off of medication by October of the same year. I’ve just celebrated my second seizure free year on the diet and couldn’t be happier! To think that I can control my epilepsy by diet alone is incredible. I have to say, in the beginning it wasn’t easy but with the internet and lots of people out there eating this way for one reason or another, not just epilepsy, makes it so much easier to follow. Even my husband is hopping on the bandwagon. I see my general physician twice yearly for blood work because I want to keep a check on this because of such a high fat diet and I’m happy to report that my cholesterol levels are better than ever! I understand too that there are those out there that suffer daily and with many more multiple seizures than I ever had. I understand this may not work for everyone. But it has helped me. Thanks for this opportunity to tell my story. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Wellness, Pregnancy, Women and Epilepsy **Tags:** anti-seizure medications, Ketogenic Diet, women and epilepsy --- ### [Postpartum Care and Epilepsy](https://livingwellwithepilepsy.com/women-epilepsy/pregnancy/postpartumcare-and-epilepsy.html) **Published:** March 8, 2023 **Author:** Maureen Knorr **Excerpt:** Maureen knew that pregnancy was going to be difficult. But postpartum care was where she lacked support from medical professionals as a woman with epilepsy. **Content:** ## [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/11/img_6284-e1574724576590-225x300.jpg "img_6284 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2023/parenting/pregnancy/postpartumcare-and-epilepsy.html/attachment/img_6284)Postpartum Care and Epilepsy At my very first appointment, only 8 weeks pregnant, my OB asked, “What are your seizure triggers?” Stress and sleep deprivation. She gave a nod that said, “We’ll get through this.” Regardless of epilepsy, I always knew that pregnancy and labor were going to be challenging. As difficult as [pregnancy](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/epilepsy-blog-relay-epilepsy-and-pregnancy-what-to-expect.html) and labor were, [postpartum care](https://www.acog.org/clinical/clinical-guidance/committee-opinion/articles/2018/05/optimizing-postpartum-care) is where found the least support from medical professionals. ## Labor and Delivery On Saturday, June 29th, my contractions began. On Sunday, June 30th at 11:23pm, my healthy, beautiful baby boy was born. It was a long labor, over 24 hours. It was intense, beastly, beautiful, and empowering all at the same time. I felt an overwhelming amount of love as my baby was placed in my arms. It’s hard to describe, but it’s the type of love that you can physically feel warming your chest. I had the instinctual reaction of bringing him close to my chest and kissing his head. I felt like he had always been a part of my life. Almost immediately after the birth, they dimmed the lights so I could nurse and the team of amazing nurses had dispersed before I even had a chance to thank them. My nerves started to calm and the pride of what I had accomplished kicked in. I just brought a human into the world! At the same time, the [lack of sleep](https://livingwellwithepilepsy.com/2014/epilepsy-news/its-a-fact-im-a-mom.html) became increasingly noticeable. ## Postpartum Care My bed was wheeled out of labor and delivery to postpartum an hour later. My sleep deficit was becoming evident through hand jerks. I knew it was time to close my eyes but all of my soul wanted to simply hold my newborn close. As my hands started to twitch, I felt inadequate knowing that in the first hours of his life, the safest place for him to be was out of my arms. Heartbroken, I called the nurse in and asked her to take my baby to the nursery. She raised her eyebrow and told me “mother’s don’t send their babies to the nursery these days. It’s healthier for baby and mama to stay together.” I whimpered that I have epilepsy, a seizure disorder (in case she didn’t know), and sleeping right now was a must and taking him to the nursery was a must. Her lip curled as she rolled my newborn out of the room. My body was starting to flop and twitch so I blinked my guilty tears away and leaned back into my bed. I fell asleep the moment my head hit the pillow. ## Nursing and Epilepsy It wasn’t long before another nurse came back with my hungry baby. Thankfully the 2 hours of sleep had recharged my batteries just enough that I confidently hugged him close to me to nurse. Again, I wanted to snuggle with him for hours but I could feel my body betraying me once again. After what seemed like the fastest hour of my life, I called the nurse to take him back to the nursery. Similar to the previous nurse, she advised me it was best for baby and mother to remain together. These comments were starting to get annoying! I was tired and didn’t want to have to repeat myself every time a new person came in. Again, I informed her about my seizure triggers, and without a hint of empathy, she turned one her heels and sped out. What was with these nurses? I started to feel judged as a mother. Did these nurses have no empathy for my situation? Or was I crazy be thinking this at all? Or maybe I have postpartum depression? I had so many questions but I reminded myself that to have my baby back in my arms, I needed to rest first. Not even three hours had passed when a clearly irritated nurse burst threw the door and flipped on the lights. “Don’t you want to feed your child?” she scolded. I was caught off guard by her aggression. “Yes, of course I want to feed my child.” They think I am a monster, I thought. The nurse continued “the nursery is for premature and sick babies, and your baby is full term and healthy.” I had no reply. I was too tired to think and I started to wonder if I was actually being selfish and was a horrible mother. My child wasn’t even 24 hours old and in my mind these nurses had already made it clear they thought I was making bad choices. Had no other mother requested her baby be in the nursery? Right as a longwinded apology was on my lips, my partner stepped in to defend my choices and asked the nurse to leave. ## Epilepsy Shaming The negative energy wasn’t in my hormonal head! I was actually being shamed! Surprisingly, I was grateful to have this feeling confirmed by my partner. As my confidence returned I reflected on my experience and was appalled by the way I had been treated. Two days later I was wheeled out to my car without a smile or word of congratulations. 4 months later and I am still appalled! My health was dismissed in the most challenging days of a new mother. I am sharing this experience so other women don’t have to go through it. I will never excuse the nursing staff completely, however I think that being more communicative would have helped. My recommendation for mother-to-be is to create an epilepsy info sheet. Make hardcopies for all staff! In your info sheet explain the basics of epilepsy. Give your seizure history, medications, and triggers. Put your triggers in bold! Unrealistically, I had expected nurses to understand epilepsy, but the truth is no one knows it all (not even nurses!). What’s your experience with childbirth? Have you ever had a medical professional dismiss your health. ![author avatar](https://secure.gravatar.com/avatar/21dd1cb76084b50fb7cccc4f2b6135cd43d1c082e5b039d6d4a99606803dc749?s=300&d=mm&r=g) Maureen Knorr I’m Maureen, and I have epilepsy. You’re probably reading this because either you have epilepsy, or you love someone that has epilepsy. Whatever sparked your curiosity, I am happy to be sharing my experiences with you. From having seizures in foreign countries to begging pharmacists that don’t speak English for medication, I can definitely say that it's been an interesting journey. Hopefully reading about my ups and downs, and my everyday and not so everyday adventures will inspire you too! Welcome to my life of living well with epilepsy! [See Full Bio](https://livingwellwithepilepsy.com/author/maureen-knorr) [ ](https://livingwellwithepilepsy.com/author/maureen-knorr) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://maureenknorr) **Categories:** Epilepsy Wellness, Mar 23 EBR Posts, Pregnancy, Women and Epilepsy **Tags:** #postpartumcare, pregnancy and epilepsy --- ### [Women and Epilepsy: Pregnancy, epilepsy and finding gratitude](https://livingwellwithepilepsy.com/women-epilepsy/pregnancy/pregnancy-and-epilepsy-finding-gratitude.html) **Published:** April 29, 2024 **Author:** Alyrical **Excerpt:** Women and Epilepsy: Stephanie shares her experience with epilepsy, pregnancy and finding gratitude through it all. **Content:** ![Alyrical](https://livingwellwithepilepsy.com/wp-content/uploads/2018/02/293066CF-9E37-441E-BF18-550923C09F10.jpeg "Alyrical – Living Well With Epilepsy") ## Women and Epilepsy Stephanie shares her experience with pregnancy and epilepsy, and finding gratitude through it all. ## Stephanie’s Story I am continuously told how much having epilepsy has truly impacted my memory. Between seizures and brain surgery it is pretty bad. My son actually told my doctor “please don’t take out anymore of my mommy’s brain because she can’t remember ANYTHING!” ## Epilepsy Diagnosis One thing I know I will never forget is when I actually got diagnosed with epilepsy and how much it changed my entire life. When I was small child I had febrile seizures and my mother told her if I had another one to rush me to the emergency room. Then I never had another one, or so I thought until my second pregnancy when I got pregnant with my daughter. ## Pregnancy and Epilepsy I began having tonic clonic seizures during my sleep, and it basically told my body I was in labor every time I had one so at 22 weeks I was 3 centimeters dilated. The doctors admitted me into the hospital immediately on strict bed rest for 3 months. **For more articles on pregnancy and epilepsy: [VISIT PREGNANCY AND EPILEPSY ](https://livingwellwithepilepsy.com/category/parenting/pregnancy)** ## Disaster Averted I remember a doctor looked me in the face one day and said, “We are just trying to keep you okay, but your daughter is going to be still born.” Thankfully although my life was completely falling apart he was wrong, and I gave birth to a perfectly healthy baby girl, my miracle baby! ## Finding Gratitude I later learned that I had been having auras my whole life but never knew what they were. I have unfortunately suffered from tonic clonic and [focal seizures](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/focal-seizures-with-todds-paralysis.html "Epilepsy Blog Relay: Focal Seizures with Todd’s Paralysis") ever since despite multiple testing, medications, and [brain surgery](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/brain-surgery-for-epilepsy.html "Epilepsy Blog Relay: Brain Surgery for Epilepsy-How did we get here"). My seizures have definitely made it so that I treasure moments. I attempt to keep records of everything, while I am making what should become memories. While I may not remember the moment, I have something to try and reflect upon. **To view some of Stephanie’s beautiful artwork visit her on instagram at: ** ![author avatar](https://secure.gravatar.com/avatar/d72f4b6c5773724e6cd830200ceee641d4eed558408fce59fd89eec38fa5a46f?s=300&d=mm&r=g) Alyrical Stephanie is a Visual Artist | ✞ | Inspiring & Sharing Mom Truths & Struggles While Overcoming Epilepsy | Legally Blind Visionary Creating with Purpose known to the world as Alyrical. Visit her site at: https://www.alyrical.com. [See Full Bio](https://livingwellwithepilepsy.com/author/alyrical) [ ](https://livingwellwithepilepsy.com/author/alyrical) **Categories:** Epilepsy Wellness, Pregnancy, Women and Epilepsy **Tags:** brain surgery, focal epilepsy, Grand Mal, Pregnancy, tonic clonic, women and epilepsy --- ### [What the EF Podcast featuring DJ HAPA](https://livingwellwithepilepsy.com/epilepsy-news-and-research/podcast/epilepsy-is-a-superpower-with-dj-hapa.html) **Published:** January 10, 2023 **Author:** Landis Wiedner **Excerpt:** What the EF podcast released its first episode today! Wanna stay motivated to keep those New Year’s resolutions? Take a listen to this heart-to-heart with DJ HAPA. **Content:** ![what the ef podcast dj hapa](https://livingwellwithepilepsy.com/wp-content/uploads/2022/12/Hapa_1-1024x1024.jpg "Hapa_1 – Living Well With Epilepsy")## Podcast Episode 1 Featuring DJ HAPA [What the EF](https://www.whattheefpodcast.com/) podcast released its first episode today! Wanna stay motivated to keep those New Year’s resolutions? Just take a listen to this heart-to-heart with [DJ HAPA](https://www.hapaworld.com/). The DJ-advocate-educator-podcaster breaks down how epilepsy can be a gift that shapes who we are and how we approach the world every day. In this incredibly inspiring episode, DJ HAPA discusses why it’s important to be an [epilepsy advocate](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/emily-becomes-an-advocate.html "Epilepsy Blog Relay: Emily Becomes an Advocate"), regardless of seizure frequency or how many TikTok followers you have. He tells us how being vulnerable about his condition led to opportunities (and love!). Available on: [Spotify](https://open.spotify.com/show/4rOV3qJjUwJxY7gKCl8z6m), [Apple](https://podcasts.apple.com/us/podcast/what-the-ef/id1649361278), [Google Podcasts](https://podcasts.google.com/feed/aHR0cHM6Ly9hbmNob3IuZm0vcy9iM2RjZjlhYy9wb2RjYXN0L3Jzcw), [Amazon Music](https://music.amazon.com/podcasts/f1311e20-cb73-44de-b5f0-14d4457e6002/what-the-ef), & [Audible](https://www.audible.com/pd/What-the-EF-Podcast/B0BHZLVX7D?qid=1665590894&sr=1-1&ref=a_search_c3_lProduct_1_1&pf_rd_p=83218cca-c308-412f-bfcf-90198b687a2f&pf_rd_r=MSGJFHHWHH7GTYXJA9PK) ## WTF is ‘What the EF?’ This podcast is a place to share, cry, and laugh at all our epilepsy WTF moments. What the EF is a podcast that discusses, points out, and chuckles at the ridiculous, poignant, heartbreaking, and sometimes funny sh\*t that happens with epilepsy. By adding laughter to the conversation, people are able to connect, lower their guards, and open themselves to vulnerable discussions. The podcast’s goal is to explore the annoying, beautiful, and traumatic aspects of life with epilepsy, couched in laughter. My co-host, Lexi, and I bring in experts, celebs, and regular folks to shed light on the crazy epilepsy stuff that no one seems to talk about. Drawing upon our own experiences, we have conversations on taboo topics in the seizure sphere. Stay up to date and subscribe to What the EF’s newsletter here: [whattheefpodcast.com](https://www.whattheefpodcast.com/) ![author avatar](https://secure.gravatar.com/avatar/19f5d1347b7f55432fb2ccf0b0547690de128dddd6f088aac79df9f670cd34f1?s=300&d=mm&r=g) Landis Wiedner Landis is a Chicago-based writer, whose work has been featured on [NBCNewsTHINK](https://www.nbcnews.com/THINK), [Wired](https://www.wired.com/) and [Chicago Tribune](https://www.chicagotribune.com/). She is a writer and Editor for Living Well With Epilepsy. Landis brings a humorous perspective to life with epilepsy. Diagnosed at 32 years old, she sheds light and laughs on managing a new life with seizures. Landis strives to create a touchstone for the chronically ill and those who support them. She is currently finishing a humorous memoir, “My Brain Tumor’s Boyfriend.” [See Full Bio](https://livingwellwithepilepsy.com/author/landiswiedner) [ ](https://livingwellwithepilepsy.com/author/landiswiedner) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://twitter.com/BillieTopanga) **Categories:** Epilepsy Wellness, podcast **Tags:** #DJHapa, #epilepsyadvocacy, #epilepsypodcast, #epilepsyresources, #epilepsystigma, #whattheefpodcast, EpilepsyAwareness --- ### [What the EF Podcast featuring Sarah Carlson](https://livingwellwithepilepsy.com/epilepsy-news-and-research/podcast/lights-camera-seizure-with-sarah-carlson.html) **Published:** January 17, 2023 **Author:** Landis Wiedner **Content:** ![what the ef podcast sarah carlson](https://livingwellwithepilepsy.com/wp-content/uploads/2023/01/SarahCarlson2-1024x1024.jpg "SarahCarlson2 – Living Well With Epilepsy") ## What the EF Podcast – Episode 2 [Sarah Carlson](https://www.wpr.org/10-years-after-air-seizure-former-madison-anchor-advocates-epilepsy-awareness) has a unique experience of how her epilepsy diagnosis came to light…literally. A former news anchor, Sarah had a seizure while on air, which ended up costing her job. During her two-year search for a diagnosis, Sarah also lost her license, kids, and marriage. She shares with us how she got to where she is today: working at a job she loves, running marathons, and—most importantly—being a mother to her children. Available on: [Spotify](https://open.spotify.com/show/4rOV3qJjUwJxY7gKCl8z6m), [Apple](https://podcasts.apple.com/us/podcast/what-the-ef/id1649361278), [Google Podcasts](https://podcasts.google.com/feed/aHR0cHM6Ly9hbmNob3IuZm0vcy9iM2RjZjlhYy9wb2RjYXN0L3Jzcw), [Amazon Music](https://music.amazon.com/podcasts/f1311e20-cb73-44de-b5f0-14d4457e6002/what-the-ef), & [Audible](https://www.audible.com/pd/What-the-EF-Podcast/B0BHZLVX7D?qid=1665590894&sr=1-1&ref=a_search_c3_lProduct_1_1&pf_rd_p=83218cca-c308-412f-bfcf-90198b687a2f&pf_rd_r=MSGJFHHWHH7GTYXJA9PK) Subscribe here: [whattheefpodcast.com](https://www.whattheefpodcast.com/) ![author avatar](https://secure.gravatar.com/avatar/19f5d1347b7f55432fb2ccf0b0547690de128dddd6f088aac79df9f670cd34f1?s=300&d=mm&r=g) Landis Wiedner Landis is a Chicago-based writer, whose work has been featured on [NBCNewsTHINK](https://www.nbcnews.com/THINK), [Wired](https://www.wired.com/) and [Chicago Tribune](https://www.chicagotribune.com/). She is a writer and Editor for Living Well With Epilepsy. Landis brings a humorous perspective to life with epilepsy. Diagnosed at 32 years old, she sheds light and laughs on managing a new life with seizures. Landis strives to create a touchstone for the chronically ill and those who support them. She is currently finishing a humorous memoir, “My Brain Tumor’s Boyfriend.” [See Full Bio](https://livingwellwithepilepsy.com/author/landiswiedner) [ ](https://livingwellwithepilepsy.com/author/landiswiedner) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://twitter.com/BillieTopanga) **Categories:** Epilepsy Wellness, podcast **Tags:** Epilepsy Awareness, epilepsy podcast, marriage and epilepsy, seizures, Stigma, what the ef podcast, work stigma --- ### [What the EF Podcast featuring Kenzie O'Connell](https://livingwellwithepilepsy.com/epilepsy-news-and-research/podcast/what-the-ef-podcast-featuring-kenzie-oconnell.html) **Published:** January 24, 2023 **Author:** Landis Wiedner **Content:** ## What the EF Podcast – Episode 3 ![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/01/Kenzie3-1-300x300.jpg "Kenzie3-1 – Living Well With Epilepsy") Struggling to find a neurologist? You’re not alone. [Kenzie O’Connell](https://livingwellwithepilepsy.com/2022/epilepsy-blog-relay/pro-golfer-kenzie-oconnell-on-taking-control-of-her-epilepsy-and-fighting-for-zero-seizures.html "Pro Golfer Kenzie O’Connell On Taking Control of Her Epilepsy and Fighting for Zero Seizures") tells us about trying to find a doc that was the best fit for her and the stressors that surface going into any neuro appointment like: “Is this my fault? Did I cause a seizure? What am I doing wrong?” We also chat about what to do when we feel like a [burden](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/mar-18-ebr-posts/epilepsy-blog-relay-diminishing-the-burden.html "Epilepsy Blog Relay: Diminishing the Burden") to our loved ones and how each of us was able to [accept](https://livingwellwithepilepsy.com/2022/personal-epilepsy-stories/epilepsy-blog-relay-on-accepting-epilepsy.html "Epilepsy Blog Relay: On Accepting Epilepsy") our epilepsy. Listen here: [Spotify](https://open.spotify.com/show/4rOV3qJjUwJxY7gKCl8z6m), [Apple](https://podcasts.apple.com/us/podcast/what-the-ef/id1649361278), [Google Podcasts](https://podcasts.google.com/feed/aHR0cHM6Ly9hbmNob3IuZm0vcy9iM2RjZjlhYy9wb2RjYXN0L3Jzcw), [Amazon Music](https://music.amazon.com/podcasts/f1311e20-cb73-44de-b5f0-14d4457e6002/what-the-ef), & [Audible](https://www.audible.com/pd/What-the-EF-Podcast/B0BHZLVX7D?qid=1665590894&sr=1-1&ref=a_search_c3_lProduct_1_1&pf_rd_p=83218cca-c308-412f-bfcf-90198b687a2f&pf_rd_r=MSGJFHHWHH7GTYXJA9PK) Subscribe to our newsletter here: [whattheefpodcast.com](https://www.whattheefpodcast.com/) ![author avatar](https://secure.gravatar.com/avatar/19f5d1347b7f55432fb2ccf0b0547690de128dddd6f088aac79df9f670cd34f1?s=300&d=mm&r=g) Landis Wiedner Landis is a Chicago-based writer, whose work has been featured on [NBCNewsTHINK](https://www.nbcnews.com/THINK), [Wired](https://www.wired.com/) and [Chicago Tribune](https://www.chicagotribune.com/). She is a writer and Editor for Living Well With Epilepsy. Landis brings a humorous perspective to life with epilepsy. Diagnosed at 32 years old, she sheds light and laughs on managing a new life with seizures. Landis strives to create a touchstone for the chronically ill and those who support them. She is currently finishing a humorous memoir, “My Brain Tumor’s Boyfriend.” [See Full Bio](https://livingwellwithepilepsy.com/author/landiswiedner) [ ](https://livingwellwithepilepsy.com/author/landiswiedner) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://twitter.com/BillieTopanga) **Categories:** Epilepsy Wellness, podcast **Tags:** #epilepsy #seizures #neurologist, Epilepsy Awareness, epilepsy stigma --- ### [What the EF Podcast featuring Mary Laura Philpott](https://livingwellwithepilepsy.com/epilepsy-stories/what-the-ef-podcast-featuring-mary-laura-philpott.html) **Published:** January 31, 2023 **Author:** Landis Wiedner **Content:** ![Mary Laura Philpott](https://livingwellwithepilepsy.com/wp-content/uploads/2023/01/MaryLaura4-1024x1024.jpg "MaryLaura Philpott – Living Well With Epilepsy")Bestselling author [Mary Laura Philpott](https://marylauraphilpott.com/) walks us through the moment that her and her family’s life was changed forever: her teenage son’s first seizure. She shares how she came to differentiate her [experience as a mother](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/a-mothers-perspective-on-her-evolving-role-as-caregiver.html) and her son’s experience as the person living with epilepsy. Mary Laura also brings to light the excruciating battle of having to let her child “spread his wings.” Like so many parents who want to [wrap their children](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/mother-and-son-with-epilepsy-and-autism-spectrum.html) in bubble wrap, Mary Laura understands the importance of letting hers experience life. Available on: [Spotify](https://open.spotify.com/show/4rOV3qJjUwJxY7gKCl8z6m), [Apple](https://podcasts.apple.com/us/podcast/what-the-ef/id1649361278), [Google Podcasts](https://podcasts.google.com/feed/aHR0cHM6Ly9hbmNob3IuZm0vcy9iM2RjZjlhYy9wb2RjYXN0L3Jzcw), [Amazon Music](https://music.amazon.com/podcasts/f1311e20-cb73-44de-b5f0-14d4457e6002/what-the-ef), & [Audible](https://www.audible.com/pd/What-the-EF-Podcast/B0BHZLVX7D?qid=1665590894&sr=1-1&ref=a_search_c3_lProduct_1_1&pf_rd_p=83218cca-c308-412f-bfcf-90198b687a2f&pf_rd_r=MSGJFHHWHH7GTYXJA9PK) Subscribe here: [whattheefpodcast.com](https://www.whattheefpodcast.com/) ![author avatar](https://secure.gravatar.com/avatar/19f5d1347b7f55432fb2ccf0b0547690de128dddd6f088aac79df9f670cd34f1?s=300&d=mm&r=g) Landis Wiedner Landis is a Chicago-based writer, whose work has been featured on [NBCNewsTHINK](https://www.nbcnews.com/THINK), [Wired](https://www.wired.com/) and [Chicago Tribune](https://www.chicagotribune.com/). She is a writer and Editor for Living Well With Epilepsy. Landis brings a humorous perspective to life with epilepsy. Diagnosed at 32 years old, she sheds light and laughs on managing a new life with seizures. Landis strives to create a touchstone for the chronically ill and those who support them. She is currently finishing a humorous memoir, “My Brain Tumor’s Boyfriend.” [See Full Bio](https://livingwellwithepilepsy.com/author/landiswiedner) [ ](https://livingwellwithepilepsy.com/author/landiswiedner) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://twitter.com/BillieTopanga) **Categories:** Epilepsy Stories, Epilepsy Wellness, podcast **Tags:** #epilepsy #seizures, caretaker, Epilepsy Awareness, epilepsy stigma --- ### [What the EF Podcast featuring Dr. Brad Ingram](https://livingwellwithepilepsy.com/epilepsy-stories/what-the-ef-podcast-featuring-dr-brad-ingram.html) **Published:** February 14, 2023 **Author:** Landis Wiedner **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/02/DrIngram6-1024x1024.jpg "DrIngram6 – Living Well With Epilepsy") ## Dudes and dating Perfect Valentine’s Day episode! As a [pediatric epileptologist](https://livingwellwithepilepsy.com/2020/parenting/transitioning-adolescent-epilepsy-into-adult.html "Transition of Care: Transitioning Adolescent Epilepsy Patients") living with epilepsy, Dr. Ingram has a unique perspective—and one that doesn’t get a lot of attention: being a male living with epilepsy. He shares struggles he faced that never occurred to us, like being a teenager and unable to pick up a date from her house…because he can’t [legally drive](https://livingwellwithepilepsy.com/2021/livingwell/taking-back-your-independence-without-a-drivers-license.html "3 tips for taking back your independence without a drivers license"). Dr. Ingram addresses societal expectations that men face (like being the tough guy), how these are heightened when dealing with a chronic illness, and how to show true strength by rejecting those standards. Listen here! [Spotify](https://open.spotify.com/show/4rOV3qJjUwJxY7gKCl8z6m), [Apple](https://podcasts.apple.com/us/podcast/what-the-ef/id1649361278), [Google Podcasts](https://podcasts.google.com/feed/aHR0cHM6Ly9hbmNob3IuZm0vcy9iM2RjZjlhYy9wb2RjYXN0L3Jzcw), [Amazon Music](https://music.amazon.com/podcasts/f1311e20-cb73-44de-b5f0-14d4457e6002/what-the-ef), & [Audible](https://www.audible.com/pd/What-the-EF-Podcast/B0BHZLVX7D?qid=1665590894&sr=1-1&ref=a_search_c3_lProduct_1_1&pf_rd_p=83218cca-c308-412f-bfcf-90198b687a2f&pf_rd_r=MSGJFHHWHH7GTYXJA9PK) Subscribe to our newsletter here: [whattheefpodcast.com](https://www.whattheefpodcast.com/) ![author avatar](https://secure.gravatar.com/avatar/19f5d1347b7f55432fb2ccf0b0547690de128dddd6f088aac79df9f670cd34f1?s=300&d=mm&r=g) Landis Wiedner Landis is a Chicago-based writer, whose work has been featured on [NBCNewsTHINK](https://www.nbcnews.com/THINK), [Wired](https://www.wired.com/) and [Chicago Tribune](https://www.chicagotribune.com/). She is a writer and Editor for Living Well With Epilepsy. Landis brings a humorous perspective to life with epilepsy. Diagnosed at 32 years old, she sheds light and laughs on managing a new life with seizures. Landis strives to create a touchstone for the chronically ill and those who support them. She is currently finishing a humorous memoir, “My Brain Tumor’s Boyfriend.” [See Full Bio](https://livingwellwithepilepsy.com/author/landiswiedner) [ ](https://livingwellwithepilepsy.com/author/landiswiedner) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://twitter.com/BillieTopanga) **Categories:** Epilepsy Stories, Epilepsy Wellness, podcast **Tags:** epilepsy, epilepsy stigma, podcast, seizures --- ### [What the EF podcast with Madeleine Khamnei](https://livingwellwithepilepsy.com/epilepsy-stories/what-the-ef-podcast-with-madeleine-khamnei.html) **Published:** May 18, 2023 **Author:** Landis Wiedner **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/05/Madeleine-1024x1024.jpg "Madeleine – Living Well With Epilepsy")We unpack it all with Madeleine Khamnei—the struggles of college, jobs, and dating. Epilepsy stopped her dreams in their tracks, and she got back up (sometimes literally), created new goals, and continues to kick ass at them. Our jaws are pretty much on the floor as Madeleine shares with us her secret to not let seizures determine her lifestyle. Available on: [YouTube](https://www.youtube.com/@WhatTheEFPodcast), [Spotify](https://open.spotify.com/show/4rOV3qJjUwJxY7gKCl8z6m), [Apple](https://podcasts.apple.com/us/podcast/what-the-ef/id1649361278), [Google Podcasts](https://podcasts.google.com/feed/aHR0cHM6Ly9hbmNob3IuZm0vcy9iM2RjZjlhYy9wb2RjYXN0L3Jzcw), [Amazon Music](https://music.amazon.com/podcasts/f1311e20-cb73-44de-b5f0-14d4457e6002/what-the-ef), & [Audible](https://www.audible.com/pd/What-the-EF-Podcast/B0BHZLVX7D?qid=1665590894&sr=1-1&ref=a_search_c3_lProduct_1_1&pf_rd_p=83218cca-c308-412f-bfcf-90198b687a2f&pf_rd_r=MSGJFHHWHH7GTYXJA9PK) Follow us on Insta! [@whattheefpodcast](https://www.instagram.com/whattheefpodcast/) Join our email fam! [whattheefpodcast.com](https://www.whattheefpodcast.com/) Subscribe to our YouTube! [@WhatTheEFPodcast](https://www.youtube.com/channel/UCYLkbgKUgppiVrVmE-ABEsw) ![author avatar](https://secure.gravatar.com/avatar/19f5d1347b7f55432fb2ccf0b0547690de128dddd6f088aac79df9f670cd34f1?s=300&d=mm&r=g) Landis Wiedner Landis is a Chicago-based writer, whose work has been featured on [NBCNewsTHINK](https://www.nbcnews.com/THINK), [Wired](https://www.wired.com/) and [Chicago Tribune](https://www.chicagotribune.com/). She is a writer and Editor for Living Well With Epilepsy. Landis brings a humorous perspective to life with epilepsy. Diagnosed at 32 years old, she sheds light and laughs on managing a new life with seizures. Landis strives to create a touchstone for the chronically ill and those who support them. She is currently finishing a humorous memoir, “My Brain Tumor’s Boyfriend.” [See Full Bio](https://livingwellwithepilepsy.com/author/landiswiedner) [ ](https://livingwellwithepilepsy.com/author/landiswiedner) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://twitter.com/BillieTopanga) **Categories:** Epilepsy Stories, Epilepsy Wellness, podcast --- ### [What the EF Podcast with Natalie Beavers](https://livingwellwithepilepsy.com/epilepsy-stories/what-the-ef-natalie-beavers.html) **Published:** February 21, 2023 **Author:** Landis Wiedner **Content:** ![Natalie Beavers](https://livingwellwithepilepsy.com/wp-content/uploads/2023/02/Natalie7-300x300.jpg "Natalie7 – Living Well With Epilepsy") #### The Epilepsy Elephant in the Room Diagnosed at age 5, [Natalie Beavers](https://angelsofepilepsy.org/) addresses the giant learning curve that ensued for her and her family. She shares how [self-advocacy](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/epilepsy-journey-to-seizure-control.html) ultimately led to creating a safe environment for herself and the epilepsy community. We’re super grateful for Natalie addressing the epilepsy elephant in the room: [depression](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/coping-with-depression.html). Natalie talks about her experiences, attempting to take her own life, and how she moved forward from that moment to create an empire that would ultimately serve others and give her purpose to get up every day. Listen here! [Spotify](https://open.spotify.com/show/4rOV3qJjUwJxY7gKCl8z6m), [Apple](https://podcasts.apple.com/us/podcast/what-the-ef/id1649361278), [Google Podcasts](https://podcasts.google.com/feed/aHR0cHM6Ly9hbmNob3IuZm0vcy9iM2RjZjlhYy9wb2RjYXN0L3Jzcw), [Amazon Music](https://music.amazon.com/podcasts/f1311e20-cb73-44de-b5f0-14d4457e6002/what-the-ef), & [Audible](https://www.audible.com/pd/What-the-EF-Podcast/B0BHZLVX7D?qid=1665590894&sr=1-1&ref=a_search_c3_lProduct_1_1&pf_rd_p=83218cca-c308-412f-bfcf-90198b687a2f&pf_rd_r=MSGJFHHWHH7GTYXJA9PK) Join our What the EF fam by subscribing to our newsletter here: [whattheefpodcast.com](https://www.whattheefpodcast.com/) ![author avatar](https://secure.gravatar.com/avatar/19f5d1347b7f55432fb2ccf0b0547690de128dddd6f088aac79df9f670cd34f1?s=300&d=mm&r=g) Landis Wiedner Landis is a Chicago-based writer, whose work has been featured on [NBCNewsTHINK](https://www.nbcnews.com/THINK), [Wired](https://www.wired.com/) and [Chicago Tribune](https://www.chicagotribune.com/). She is a writer and Editor for Living Well With Epilepsy. Landis brings a humorous perspective to life with epilepsy. Diagnosed at 32 years old, she sheds light and laughs on managing a new life with seizures. Landis strives to create a touchstone for the chronically ill and those who support them. She is currently finishing a humorous memoir, “My Brain Tumor’s Boyfriend.” [See Full Bio](https://livingwellwithepilepsy.com/author/landiswiedner) [ ](https://livingwellwithepilepsy.com/author/landiswiedner) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://twitter.com/BillieTopanga) **Categories:** Epilepsy Stories, Epilepsy Wellness, podcast **Tags:** #epilepsyadvocacy, depression --- ### [What the EF Podcast with Eli Corbett](https://livingwellwithepilepsy.com/epilepsy-stories/what-the-ef-podcast-with-eli-corbett.html) **Published:** February 28, 2023 **Author:** Landis Wiedner **Excerpt:** Diagnosed with epilepsy as a teen, Eli did what many of us have done: hid it from everyone and pretended it’s not there. Years later as a practicing attorney, a higher up told her that if she wanted to be successful, she needed to keep her diagnosis to herself. **Content:** #### ![Eli Corbett](https://livingwellwithepilepsy.com/wp-content/uploads/2023/02/Eli8-300x300.jpg "Eli8 – Living Well With Epilepsy")How this bad ass owned her epilepsy Diagnosed with epilepsy as a [teen](https://livingwellwithepilepsy.com/2013/personal-epilepsy-stories/sophies-story-teen-experience.html), Eli did what many of us have done: hid it from everyone and pretended it’s not there. Years later as a practicing attorney, a higher up told her that if she wanted to be successful, she needed to [keep her diagnosis to herself](https://livingwellwithepilepsy.com/2021/personal-epilepsy-stories/afraid-to-tell-others-about-epilepsy.html). Instead, she chose to tell *everyone*. By owning her story, Eli shares how it helped her go farther and opened doors she never even imagined. Listen here! [Spotify](https://open.spotify.com/show/4rOV3qJjUwJxY7gKCl8z6m), [Apple](https://podcasts.apple.com/us/podcast/what-the-ef/id1649361278), [Google Podcasts](https://podcasts.google.com/feed/aHR0cHM6Ly9hbmNob3IuZm0vcy9iM2RjZjlhYy9wb2RjYXN0L3Jzcw), [Amazon Music](https://music.amazon.com/podcasts/f1311e20-cb73-44de-b5f0-14d4457e6002/what-the-ef), & [Audible](https://www.audible.com/pd/What-the-EF-Podcast/B0BHZLVX7D?qid=1665590894&sr=1-1&ref=a_search_c3_lProduct_1_1&pf_rd_p=83218cca-c308-412f-bfcf-90198b687a2f&pf_rd_r=MSGJFHHWHH7GTYXJA9PK) Join the What the EF fam by subscribing to our newsletter here: [whattheefpodcast.com](https://www.whattheefpodcast.com/) ![author avatar](https://secure.gravatar.com/avatar/19f5d1347b7f55432fb2ccf0b0547690de128dddd6f088aac79df9f670cd34f1?s=300&d=mm&r=g) Landis Wiedner Landis is a Chicago-based writer, whose work has been featured on [NBCNewsTHINK](https://www.nbcnews.com/THINK), [Wired](https://www.wired.com/) and [Chicago Tribune](https://www.chicagotribune.com/). She is a writer and Editor for Living Well With Epilepsy. Landis brings a humorous perspective to life with epilepsy. Diagnosed at 32 years old, she sheds light and laughs on managing a new life with seizures. Landis strives to create a touchstone for the chronically ill and those who support them. She is currently finishing a humorous memoir, “My Brain Tumor’s Boyfriend.” [See Full Bio](https://livingwellwithepilepsy.com/author/landiswiedner) [ ](https://livingwellwithepilepsy.com/author/landiswiedner) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://twitter.com/BillieTopanga) **Categories:** Epilepsy Stories, Epilepsy Wellness, podcast **Tags:** eli corbett, epilepsy stigma, what the ef podcast, work stigma --- ### [What the EF podcast with Lisa Lindahl](https://livingwellwithepilepsy.com/epilepsy-news-and-research/podcast/what-the-ef-podcast-with-lisa-lindahl.html) **Published:** May 25, 2023 **Author:** Landis Wiedner **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/05/Lisa-1024x1024.jpg "Lisa – Living Well With Epilepsy")Lisa Lindahl is the inventor of the sports bra. ‘Nuff said. Lisa’s mom said that epilepsy meant she had zero expectations of Lisa accomplishing anything. Instead, Lisa paved the way for female entrepreneurs and people living with epilepsy. We chatted with this icon about how much things have changed—and what still needs changing—in this inspiring episode. Available on: [YouTube](https://www.youtube.com/@WhatTheEFPodcast), [Spotify](https://open.spotify.com/show/4rOV3qJjUwJxY7gKCl8z6m), [Apple](https://podcasts.apple.com/us/podcast/what-the-ef/id1649361278), [Google Podcasts](https://podcasts.google.com/feed/aHR0cHM6Ly9hbmNob3IuZm0vcy9iM2RjZjlhYy9wb2RjYXN0L3Jzcw), [Amazon Music](https://music.amazon.com/podcasts/f1311e20-cb73-44de-b5f0-14d4457e6002/what-the-ef), & [Audible](https://www.audible.com/pd/What-the-EF-Podcast/B0BHZLVX7D?qid=1665590894&sr=1-1&ref=a_search_c3_lProduct_1_1&pf_rd_p=83218cca-c308-412f-bfcf-90198b687a2f&pf_rd_r=MSGJFHHWHH7GTYXJA9PK) Follow us on Insta! [@whattheefpodcast](https://www.instagram.com/whattheefpodcast/) Join our email fam! [whattheefpodcast.com](https://www.whattheefpodcast.com/) Subscribe to our YouTube! [@WhatTheEFPodcast](https://www.youtube.com/channel/UCYLkbgKUgppiVrVmE-ABEsw) ![author avatar](https://secure.gravatar.com/avatar/19f5d1347b7f55432fb2ccf0b0547690de128dddd6f088aac79df9f670cd34f1?s=300&d=mm&r=g) Landis Wiedner Landis is a Chicago-based writer, whose work has been featured on [NBCNewsTHINK](https://www.nbcnews.com/THINK), [Wired](https://www.wired.com/) and [Chicago Tribune](https://www.chicagotribune.com/). She is a writer and Editor for Living Well With Epilepsy. Landis brings a humorous perspective to life with epilepsy. Diagnosed at 32 years old, she sheds light and laughs on managing a new life with seizures. Landis strives to create a touchstone for the chronically ill and those who support them. She is currently finishing a humorous memoir, “My Brain Tumor’s Boyfriend.” [See Full Bio](https://livingwellwithepilepsy.com/author/landiswiedner) [ ](https://livingwellwithepilepsy.com/author/landiswiedner) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://twitter.com/BillieTopanga) **Categories:** Epilepsy Stories, Epilepsy Wellness, podcast **Tags:** epilepsy, epilepsy stigma, seizures --- ### [How to have a career and manage epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/how-to-have-a-career-and-manage-epilepsy.html) **Published:** September 15, 2023 **Author:** Landis Wiedner **Content:** ![Jennifer Reyes how to have a career and manage epilepsy](https://livingwellwithepilepsy.com/wp-content/uploads/2023/09/1-1024x1024.jpg "1 – Living Well With Epilepsy") [What the EF podcast](https://www.whattheefpodcast.com/) kicks off Seizen 3 with Jennifer Reyes on her strategies for the [awkward convos at work](https://livingwellwithepilepsy.com/2023/livingwell/self-care-tips-to-try.html "7 Epilepsy Self-Care Tips to Try in 2023") about seizures or needing [accommodations](https://livingwellwithepilepsy.com/2023/epilepsy-coach/5-reasons-to-work-with-an-epilepsy-health-coach.html "5 Reasons to work with an epilepsy health coach") (which are legally required but hard to ask for). Grab a pen because you’ll want to write these tips down! Available on: [YouTube](https://youtu.be/Zo668VrjdXI?si=Sn4ryHzVCETmymTG), [Spotify](https://open.spotify.com/show/4rOV3qJjUwJxY7gKCl8z6m), [Apple](https://podcasts.apple.com/us/podcast/what-the-ef/id1649361278), [Google Podcasts](https://podcasts.google.com/feed/aHR0cHM6Ly9hbmNob3IuZm0vcy9iM2RjZjlhYy9wb2RjYXN0L3Jzcw), [Amazon Music](https://music.amazon.com/podcasts/f1311e20-cb73-44de-b5f0-14d4457e6002/what-the-ef), & [Audible](https://www.audible.com/pd/What-the-EF-Podcast/B0BHZLVX7D?qid=1665590894&sr=1-1&ref=a_search_c3_lProduct_1_1&pf_rd_p=83218cca-c308-412f-bfcf-90198b687a2f&pf_rd_r=MSGJFHHWHH7GTYXJA9PK) ![author avatar](https://secure.gravatar.com/avatar/19f5d1347b7f55432fb2ccf0b0547690de128dddd6f088aac79df9f670cd34f1?s=300&d=mm&r=g) Landis Wiedner Landis is a Chicago-based writer, whose work has been featured on [NBCNewsTHINK](https://www.nbcnews.com/THINK), [Wired](https://www.wired.com/) and [Chicago Tribune](https://www.chicagotribune.com/). She is a writer and Editor for Living Well With Epilepsy. Landis brings a humorous perspective to life with epilepsy. Diagnosed at 32 years old, she sheds light and laughs on managing a new life with seizures. Landis strives to create a touchstone for the chronically ill and those who support them. She is currently finishing a humorous memoir, “My Brain Tumor’s Boyfriend.” [See Full Bio](https://livingwellwithepilepsy.com/author/landiswiedner) [ ](https://livingwellwithepilepsy.com/author/landiswiedner) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://twitter.com/BillieTopanga) **Categories:** Epilepsy Stories, Epilepsy Wellness, podcast **Tags:** epilepsy, Epilepsy in Everyday Life, epilepsy stigma, seizures --- ### [Support groups could be the new dating app](https://livingwellwithepilepsy.com/epilepsy-stories/support-groups-could-be-the-new-dating-app.html) **Published:** September 21, 2023 **Author:** Landis Wiedner **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/09/2-1024x1024.jpg "2 – Living Well With Epilepsy")](https://www.whattheefpodcast.com/) This episode of [What the EF podcast](https://www.whattheefpodcast.com/) has the world’s best meet-cute and what dating with empathy looks like. Calling in from Scotland, Abby and Colin Bodie share their love story and how it feels being with someone who truly gets it. Available on: [YouTube](https://www.youtube.com/@WhatTheEFPodcast), [Spotify](https://open.spotify.com/show/4rOV3qJjUwJxY7gKCl8z6m), [Apple](https://podcasts.apple.com/us/podcast/what-the-ef/id1649361278), [Google Podcasts](https://podcasts.google.com/feed/aHR0cHM6Ly9hbmNob3IuZm0vcy9iM2RjZjlhYy9wb2RjYXN0L3Jzcw), [Amazon Music](https://music.amazon.com/podcasts/f1311e20-cb73-44de-b5f0-14d4457e6002/what-the-ef), & [Audible](https://www.audible.com/pd/What-the-EF-Podcast/B0BHZLVX7D?qid=1665590894&sr=1-1&ref=a_search_c3_lProduct_1_1&pf_rd_p=83218cca-c308-412f-bfcf-90198b687a2f&pf_rd_r=MSGJFHHWHH7GTYXJA9PK) Stay connected to What the EF podcast! Follow on Instagram: [@whattheefpodcast](https://www.instagram.com/whattheefpodcast/) Subscribe to the YouTube channel: [@WhatTheEFPodcast](https://www.youtube.com/channel/UCYLkbgKUgppiVrVmE-ABEsw) Subscribe to the newsletter: [whattheefpodcast.com](https://www.whattheefpodcast.com/) ![author avatar](https://secure.gravatar.com/avatar/19f5d1347b7f55432fb2ccf0b0547690de128dddd6f088aac79df9f670cd34f1?s=300&d=mm&r=g) Landis Wiedner Landis is a Chicago-based writer, whose work has been featured on [NBCNewsTHINK](https://www.nbcnews.com/THINK), [Wired](https://www.wired.com/) and [Chicago Tribune](https://www.chicagotribune.com/). She is a writer and Editor for Living Well With Epilepsy. Landis brings a humorous perspective to life with epilepsy. Diagnosed at 32 years old, she sheds light and laughs on managing a new life with seizures. Landis strives to create a touchstone for the chronically ill and those who support them. She is currently finishing a humorous memoir, “My Brain Tumor’s Boyfriend.” [See Full Bio](https://livingwellwithepilepsy.com/author/landiswiedner) [ ](https://livingwellwithepilepsy.com/author/landiswiedner) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://twitter.com/BillieTopanga) **Categories:** Epilepsy Stories, Epilepsy Wellness, podcast **Tags:** seizures, Stigma, support groups --- ### [Still surfing: water safety and epilepsy with Jared Muscat](https://livingwellwithepilepsy.com/epilepsy-stories/still-surfing-water-safety-and-epilepsy-with-jared-muscat.html) **Published:** October 4, 2023 **Author:** Landis Wiedner **Content:** [![Jared Muscat](https://livingwellwithepilepsy.com/wp-content/uploads/2023/09/4-1024x1024.jpg "– Living Well With Epilepsy")](https://youtu.be/4K86IhXmhLg) In this episode, [What the EF podcast](https://www.whattheefpodcast.com/) talks to Jared Muscat about why he wouldn’t let epilepsy stop him from doing his favorite thing: surfing. [Water safety](https://livingwellwithepilepsy.com/2021/epilepsy-stories/epilepsy-blog-relay-that-one-time-where-its-okay-to-be-a-helicopter-parent.html "Special Needs Parenting: When it’s okay to be a helicopter parent") is tricky when it comes to seizures, and Jared shares how to [stay safe without giving up your passion](https://livingwellwithepilepsy.com/2019/epilepsy-stories/searching-for-my-passion-my-quarter-life-crisis.html "Epilepsy Blog Relay: Searching for my passion – my quarter life crisis")—no matter what it is. What the EF is available on your fave streaming services: [YouTube](https://youtu.be/4K86IhXmhLg), [Spotify](https://open.spotify.com/show/4rOV3qJjUwJxY7gKCl8z6m), [Apple](https://podcasts.apple.com/us/podcast/what-the-ef/id1649361278), [Google Podcasts](https://podcasts.google.com/feed/aHR0cHM6Ly9hbmNob3IuZm0vcy9iM2RjZjlhYy9wb2RjYXN0L3Jzcw), [Amazon Music](https://music.amazon.com/podcasts/f1311e20-cb73-44de-b5f0-14d4457e6002/what-the-ef), & [Audible](https://www.audible.com/pd/What-the-EF-Podcast/B0BHZLVX7D?qid=1665590894&sr=1-1&ref=a_search_c3_lProduct_1_1&pf_rd_p=83218cca-c308-412f-bfcf-90198b687a2f&pf_rd_r=MSGJFHHWHH7GTYXJA9PK) Connect with What the EF! Follow on Instagram at [@whattheefpodcast](https://www.instagram.com/whattheefpodcast/) and subscribe to the newsletter [whattheefpodcast.com](https://www.whattheefpodcast.com/)! ![author avatar](https://secure.gravatar.com/avatar/19f5d1347b7f55432fb2ccf0b0547690de128dddd6f088aac79df9f670cd34f1?s=300&d=mm&r=g) Landis Wiedner Landis is a Chicago-based writer, whose work has been featured on [NBCNewsTHINK](https://www.nbcnews.com/THINK), [Wired](https://www.wired.com/) and [Chicago Tribune](https://www.chicagotribune.com/). She is a writer and Editor for Living Well With Epilepsy. Landis brings a humorous perspective to life with epilepsy. Diagnosed at 32 years old, she sheds light and laughs on managing a new life with seizures. Landis strives to create a touchstone for the chronically ill and those who support them. She is currently finishing a humorous memoir, “My Brain Tumor’s Boyfriend.” [See Full Bio](https://livingwellwithepilepsy.com/author/landiswiedner) [ ](https://livingwellwithepilepsy.com/author/landiswiedner) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://twitter.com/BillieTopanga) **Categories:** Epilepsy Stories, Epilepsy Wellness, podcast **Tags:** epilepsy, Epilepsy Awareness, seizures, water safety --- ### [How does marriage work with epilepsy? with Tiffany Kairos](https://livingwellwithepilepsy.com/epilepsy-stories/how-does-marriage-work-with-epilepsy-with-tiffany-kairos.html) **Published:** October 19, 2023 **Author:** Landis Wiedner **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/10/6-1024x1024.jpg "6 – Living Well With Epilepsy")](https://youtu.be/93RXV8gwH-4) In this episode, [What the EF podcast ](https://www.whattheefpodcast.com/)chats with the queen of epilepsy advocacy, [Tiffany Kairos](https://linktr.ee/tiffanykairosofficial), and ask the questions that can’t be answered in a [doc’s office.](https://livingwellwithepilepsy.com/2022/epilepsy-blog-relay/what-doctor-should-i-see-if-i-had-a-seizure.html "Epilepsy Blog Relay: What doctor should I see if I had a seizure?") Like…what does a marriage look like when epilepsy enters [after the wedding day](https://livingwellwithepilepsy.com/2022/epilepsy-blog-relay/epilepsy-support-through-positive-relationships.html "Epilepsy Blog Relay: Epilepsy support through positive relationships")? Available on: [YouTube](https://youtu.be/93RXV8gwH-4), [Spotify](https://open.spotify.com/show/4rOV3qJjUwJxY7gKCl8z6m), [Apple](https://podcasts.apple.com/us/podcast/what-the-ef/id1649361278), [Google Podcasts](https://podcasts.google.com/feed/aHR0cHM6Ly9hbmNob3IuZm0vcy9iM2RjZjlhYy9wb2RjYXN0L3Jzcw), [Amazon Music](https://music.amazon.com/podcasts/f1311e20-cb73-44de-b5f0-14d4457e6002/what-the-ef), & [Audible](https://www.audible.com/pd/What-the-EF-Podcast/B0BHZLVX7D?qid=1665590894&sr=1-1&ref=a_search_c3_lProduct_1_1&pf_rd_p=83218cca-c308-412f-bfcf-90198b687a2f&pf_rd_r=MSGJFHHWHH7GTYXJA9PK) Connect with What the EF! Instagram – [@whattheefpodcast](https://www.instagram.com/whattheefpodcast/) YouTube – [@WhatTheEFPodcast](https://www.youtube.com/channel/UCYLkbgKUgppiVrVmE-ABEsw) Subscribe to the newsletter – [whattheefpodcast.com](https://www.whattheefpodcast.com/) ![author avatar](https://secure.gravatar.com/avatar/19f5d1347b7f55432fb2ccf0b0547690de128dddd6f088aac79df9f670cd34f1?s=300&d=mm&r=g) Landis Wiedner Landis is a Chicago-based writer, whose work has been featured on [NBCNewsTHINK](https://www.nbcnews.com/THINK), [Wired](https://www.wired.com/) and [Chicago Tribune](https://www.chicagotribune.com/). She is a writer and Editor for Living Well With Epilepsy. Landis brings a humorous perspective to life with epilepsy. Diagnosed at 32 years old, she sheds light and laughs on managing a new life with seizures. Landis strives to create a touchstone for the chronically ill and those who support them. She is currently finishing a humorous memoir, “My Brain Tumor’s Boyfriend.” [See Full Bio](https://livingwellwithepilepsy.com/author/landiswiedner) [ ](https://livingwellwithepilepsy.com/author/landiswiedner) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://twitter.com/BillieTopanga) **Categories:** Epilepsy Stories, Epilepsy Wellness, podcast **Tags:** epilepsy, epilepsy and relationships, Epilepsy in Everyday Life, epilepsy stigma, seizures --- ### [What is Dialectical Behavioral Therapy or DBT ?](https://livingwellwithepilepsy.com/life-with-epilepsy/mentalhealth/what-is-dbt.html) **Published:** July 15, 2024 **Author:** Jessica K. Smith **Excerpt:** Dialectical Behavior Therapy (DBT) offers powerful tools for managing epilepsy. The four key DBT skills - mindfulness, distress tolerance, emotion regulation, and interpersonal effectiveness - can help you navigate your epilepsy journey with greater ease. **Content:** ## [![epilepsy and dbt](https://livingwellwithepilepsy.com/wp-content/uploads/2024/07/1-1024x1024.jpg "Transform your epilepsy journey with DBT – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2024/07/1.jpg)What is Dialectical Behavior Therapy or DBT? Dialectical Behaviour Therapy (DBT) is an evidence-based model of therapy, developed by Marsha M. Linehan in the 1970’s, that helps people learn and use new skills and strategies to support them in building lives they feel are worth living. Since we know living with epilepsy can be challenging to say the least, it’s no surprise that Dialectical Behavior Therapy (DBT) offers powerful tools to help manage life with this chronic disease more effectively. DBT is a type of therapy used in mental heath that focuses on four key skills: mindfulness, distress tolerance, emotion regulation, and interpersonal effectiveness. These skills can make a significant difference in your epilepsy journey, helping you navigate challenges common to those of us living with chronic illness with greater ease and improving your overall quality of life. Make no mistake DBT, will not cure your epilepsy and it won’t stop your seizures like a rescue med, but if used consistently it can help manage the day to day stress and trauma that we face that puts us more at risk of seizures. So with that said, I want to introduce you to my series on how DBT can be used to benefit life with epilepsy. ## Skill 1: Mindfulness – Stay Present and Aware Mindfulness is a core DBT skill that involves staying present and fully engaged in the moment. For individuals with epilepsy, mindfulness can help reduce stress and recognize early signs of seizures. By practicing mindfulness, you can become more aware of your body’s signals and take proactive steps to manage your condition. Techniques such as deep breathing, body scans, and mindful observation can be integrated into your daily routine, offering calm and balance. ## Skill 2: Distress Tolerance – Handling Difficult Emotions I think we can all agree that epilepsy brings with it some pretty difficult emotions. Distress tolerance equips you with techniques to handle difficult emotions and crises without making things worse. We’ll cover a variety of tools in this series that fall under Distress Tolerance. This skill is particularly beneficial for managing the intense emotions that can accompany epilepsy. Techniques such as distraction, self-soothing, and radical acceptance can help you cope with challenging moments and prevent emotional overload. By building your distress tolerance, you can navigate crises more effectively and maintain emotional stability. ## Skill 3: Emotion Regulation – Understand and Manage Your Feelings This one can be especially important when navigating overwhelm and the longterm impacts of living with epilepsy. Emotion regulation is the ability to understand and manage your emotions, preventing them from becoming overwhelming. For individuals with epilepsy, emotion regulation is crucial in maintaining emotional balance and reducing stress. DBT provides tools to identify your emotions, understand their causes, and develop strategies to manage them. By improving your emotion regulation skills, you can prevent emotional overload and enhance your overall well-being. ## Skill 4: Interpersonal Effectiveness – Communicate Your Needs Interpersonal effectiveness ensures that you can communicate your needs clearly and build stronger relationships. This is so important when it comes to advocating for yourself! This skill is essential for individuals with epilepsy, as it helps foster a supportive network of family, friends, and healthcare providers. Techniques such as assertive communication and the DEAR MAN skill from DBT can help you express yourself confidently and effectively. By improving your communication skills, you can enhance your support systems and improve your overall quality of life. ## More on DBT DBT offers a comprehensive set of skills that can significantly improve life with epilepsy. By mastering mindfulness, distress tolerance, emotion regulation, and interpersonal effectiveness, you can navigate your epilepsy journey with greater ease and achieve better health outcomes. Start incorporating these DBT skills into your daily routine and discover the difference they can make in your life. And watch for more in our series on DBT and Epilepsy. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Wellness, Mental Health **Tags:** #epilepsycoach, DBT and Epilepsy --- ### [DBT: Quality of Life When Living with Epilepsy](https://livingwellwithepilepsy.com/life-with-epilepsy/mentalhealth/quality-of-life-when-living-with-epilepsy.html) **Published:** July 24, 2024 **Author:** Jessica K. Smith **Excerpt:** Having a good quality of life when living with epilepsy can be difficult considering the constant challenge of seizures and their impact on day to day life. **Content:** ## [![DBT for Epilepsy Warriors](https://livingwellwithepilepsy.com/wp-content/uploads/2024/07/4-1024x1024.jpg "Quality of Life in Epilepsy – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2024/07/4.jpg)Quality of Life Finding a good quality of life when living with epilepsy can be difficult, even overwhelming, when you bear in mind the constant challenge of managing seizures and their impact on day to day life. That’s why as someone who has been living with epilepsy and other chronic illness for more than 40 years, I wanted to share information on how Dialectical Behavior Therapy (DBT) can provide tools to help you reestablish some level of control in your life. DBT can also give you tools to help navigate your journey with confidence. I have found that by mastering DBT skills in my own life I have been able to transform my experience from feeling overwhelmed to having a sense of control despite my epilepsy (and cancer). ## Mindfulness: Staying Grounded As I’ve mentioned in previous articles, mindfulness is a core DBT skill that can help you stay grounded and present in the moment. For me, as someone living with epilepsy, mindfulness reduces anxiety and stress, which are two of my common seizure triggers. By practicing mindfulness, I am able to stay more aware of my body’s signals and take proactive steps to manage those days when I might be feeling “seizur-y”. I find techniques such as deep breathing, body scans, and mindful observation are easily integrated into my daily routine now that I am aware they are available to me. As a result they help me stay calm and balanced (for the most part) – I mean, no one’s perfect. [Check Out Our Series on DBT ](https://livingwellwithepilepsy.com/category/mentalhealth) ## Distress Tolerance: Managing Crises and Difficult Emotions Distress tolerance provides strategies for managing crises and difficult emotions without making things worse. This skill has been particularly important for me following the recurrence of my cancer and is of use to anyone who is struggling with seizure control. This skill can help you cope with any intense emotions and maintain stability during challenging moments. Like when you need to get ready for a doctor’s appointment or a med change. Techniques such as distraction, self-soothing, and radical acceptance can help you handle crises effectively and prevent emotional overload. These skills have helped me navigate some pretty rough waters over the past few years and anyone who has been a regular reader knows it hasn’t been pretty. ## Emotion Regulation: Understanding and Balancing Your Feelings Emotion regulation is the ability to understand and balance your feelings, preventing them from becoming overwhelming. I have to say, I wish for the sake of some of my friendships in my twenties that I had discovered DBT decades ago. Maybe I wouldn’t have burned so many bridges. Oh well – maybe I can blame it on the meds, or the seizures or just all the damn trauma! In any case, for those of us with epilepsy this set of skills is invaluable. Emotion Regulation can help you manage emotional stability and reduce stress by giving you the tools to identify your emotions, understand their causes, and develop strategies to manage them. These tools won’t magically change your circumstance. But you will gain a new perspective and have the ability to see the scenario through a new lens. This will help to enhance your overall well-being and quality of life. (I know it sounds crazy – its so simple but I promise it is super helpful). Just keep reading. ## Interpersonal Effectiveness: Building Strong Support Networks This one is huge when it comes to the stigma that surrounds the invisible disability that is epilepsy. This has given me the tools to ensure I am outfitted with clear communication and stronger support networks. Obviously that was essential for me when navigating chemotherapy but the same holds true for anyone navigating seizures. This skill is essential for individuals with epilepsy, as it helps you build a supportive network of family, friends, and healthcare providers. By improving your communication skills, you can foster better relationships and receive the support you need. ## Getting the best Quality of Life DBT offers a comprehensive set of skills that can significantly improve your quality of life when you are living with epilepsy. I know because I have implemented it in my own life and then kicked it up a notch when I was diagnosed with cancer. By mastering mindfulness, distress tolerance, emotion regulation, and interpersonal effectiveness, you can navigate your epilepsy journey with greater ease and achieve better health outcomes. As a first step just check out this series and learn more about DBT. If you are curious you can always schedule a discovery call with me. [Book a FREE discovery call ](https://calendly.com/livingwellwithepilepsy/epilepsy-coaching-discovery-call) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Wellness, Mental Health **Tags:** #epilepsycoach, DBT and Epilepsy --- ### [Discover How These DBT Skills Can Improve Life with Epilepsy](https://livingwellwithepilepsy.com/life-with-epilepsy/mentalhealth/discover-how-these-dbt-skills-improve-life-with-epilepsy.html) **Published:** July 29, 2024 **Author:** Jessica K. Smith **Excerpt:** DBT skills can significantly improve quality of life by managing both the physical and emotional aspects of epilepsy. **Content:** ## [![DBT Skills can improve life with epilepsy](https://livingwellwithepilepsy.com/wp-content/uploads/2024/07/5-1024x1024.jpg "DBT Skills can improve life with epilepsy – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2024/07/5.jpg)DBT Skills [Dialectical Behavior Therapy (DBT)](https://livingwellwithepilepsy.com/2024/mentalhealth/what-is-dbt.html "What is Dialectical Behavioral Therapy or DBT ?") offers a comprehensive set of skills that can significantly improve life with epilepsy. These [DBT skills](https://www.oprahdaily.com/life/health/a42778003/what-is-dbt-life-changing-therapy/), including mindfulness, distress tolerance, emotion regulation, and interpersonal effectiveness, provide valuable tools for managing both the physical and emotional aspects of epilepsy. [Check Out Our Series on DBT ](https://livingwellwithepilepsy.com/category/mentalhealth) ## Mindfulness: Staying Present and Managing Stress Mindfulness is a core DBT skill that helps you stay present and manage stress. For individuals with epilepsy, mindfulness can reduce seizure triggers by promoting a state of calm and awareness. Techniques such as deep breathing, body scans, and mindful observation can be easily incorporated into your daily routine, helping you stay grounded and reduce anxiety. ## Distress Tolerance: Handling Crises Effectively Distress tolerance, another DBT skill, equips you with tools to handle crises without worsening the situation. This skill is particularly beneficial for managing the intense emotions that can accompany epilepsy. Techniques like distraction, self-soothing, and radical acceptance help you cope with challenging moments and maintain stability. By building your distress tolerance, you can navigate crises more effectively and prevent emotional overload. ## Emotion Regulation: Understanding and Managing Emotions Emotion regulation is the ability to understand and manage your emotions, leading to better emotional stability. For individuals with epilepsy, this DBT skill is crucial for maintaining balance and reducing stress. DBT provides tools to identify your emotions, understand their causes, and develop strategies to manage them effectively. By improving your emotion regulation skills, you can enhance your overall well-being and quality of life. ## Interpersonal Effectiveness: Building Strong Relationships Interpersonal effectiveness ensures effective communication and strong relationships, providing vital support for managing epilepsy. This skill helps you build a supportive network of family, friends, and healthcare providers. Techniques such as assertive communication and the DEAR MAN skill from DBT can help you express your needs confidently and effectively. By improving this DBT skill, you can foster better relationships and receive the support you need. ## Watch for More DBT offers a comprehensive set of skills that can significantly improve life with epilepsy. By mastering mindfulness, distress tolerance, emotion regulation, and interpersonal effectiveness, you can navigate your epilepsy journey with greater ease and achieve better health outcomes. Start incorporating these DBT skills into your daily routine and discover the difference they can make in your life. Embrace DBT as a valuable tool in your epilepsy management strategy and enhance your overall quality of life. Later in the series we will get into visual aids and skills and worksheets you can use in your real life to start incorporating some of this stuff. And just an fyi I integrate this into my coaching practice when I work with epilepsy clients. [Book a FREE discovery call ](https://calendly.com/livingwellwithepilepsy/epilepsy-coaching-discovery-call) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Wellness, Mental Health **Tags:** #epilepsycoach --- ### [Calm Your Nervous System with the 4-7-8 Breathing Technique](https://livingwellwithepilepsy.com/life-with-epilepsy/mentalhealth/calm-your-nervous-system-with-the-4-7-8-breathing-technique.html) **Published:** July 31, 2024 **Author:** Jessica K. Smith **Excerpt:** The 4-7-8 breathing technique is a simple yet effective DBT tool to calm your nervous system, especially useful for epilepsy management. **Content:** ## [![4 7 8 Breathing Technique](https://livingwellwithepilepsy.com/wp-content/uploads/2024/07/6-1024x1024.jpg "4 7 8 Breathing Technique – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2024/07/6.jpg)Mindfulness DBT Skill: Try 4-7-8 Breathing Managing [epilepsy](https://livingwellwithepilepsy.com/epilepsy "About Epilepsy: The Basics") involves addressing both physical and [emotional aspects](https://livingwellwithepilepsy.com/epilepsy-health-coach-programs "Work with an Epilepsy Health Coach") of this chronic illness. One effective tool to calm your nervous system and reduce seizure triggers is the 4-7-8 breathing technique, a simple yet powerful DBT skill. This breathing pattern has been shown to help reduce anxiety and stress, promoting a calm and balanced nervous system. [Check Out Our Series on DBT ](https://livingwellwithepilepsy.com/category/mentalhealth) ## What the heck is 4-7-8 Breathing? The 4-7-8 breathing technique is easy to learn and can be practiced anywhere. It was popularized by Andrew Weil, MD but has ancient roots in the yogic practice of pranayama. **According to Dr. Weil here’s how it works:** - Inhale quietly through your nose for 4 seconds. - Hold your breath for 7 seconds. - Exhale completely through your mouth for 8 seconds. - Keep going. This rhythmic breathing pattern helps slow down your heart rate and promote relaxation, reducing anxiety and stress. ## Benefits of 4-7-8 Breathing for Epilepsy Management The 4-7-8 breathing technique offers several benefits for epilepsy management. By calming your nervous system, this technique helps reduce stress and anxiety, which are common seizure triggers. Regular practice can enhance your overall emotional resilience and improve your ability to manage epilepsy. Additionally, this mindful breathing exercise promotes a sense of calm and balance, helping you stay present and grounded. ## Adding 4-7-8 Breathing into Your Routine To really benefit from the 4-7-8 breathing technique, it’s best to try to incorporate it into your daily routine. Consider these options: 1. Try doing the breathing in the morning before you get out of bed. 2. Set aside a few minutes each day for mindful breathing when you need a break. 3. Maybe once you are settled in bed for the night try doing the breathing before you fall asleep. 4. Or you could just set an alarm each day for a time to do the breathing. (this would never work for me but maybe it would for you!) Over time, this practice will become a natural part of your routine, helping you maintain a calm and balanced nervous system. ## Useful Tips Here are some practical tips for practicing the 4-7-8 breathing technique: - Find a quiet and comfortable place where you can sit or lie down. - Close your eyes and focus on your breath. - Follow the 4-7-8 pattern: inhale for 4 seconds, hold for 7 seconds, and exhale for 8 seconds. - Repeat this cycle four times, gradually increasing the number of cycles as you become more comfortable. - Practice this technique daily to build a habit of mindful breathing. ## Simple and Effective The 4-7-8 breathing technique is a simple yet effective tool to calm your nervous system and reduce seizure triggers. By incorporating this mindful breathing exercise into your daily routine, you can enhance your epilepsy management and improve your overall well-being. **Remember this is NOT a replacement for your medication or treatment.** It is to give you an additional edge to manage all the stuff life throws at you above and beyond your epilepsy. Start practicing the 4-7-8 breathing technique today and discover the benefits of a calm and balanced nervous system. [Book a FREE discovery call ](https://calendly.com/livingwellwithepilepsy/epilepsy-coaching-discovery-call) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Wellness, Mental Health **Tags:** #epilepsycoach, 4-7-8 breathing --- ### [Alison's Story: When a Seizure Happens at Work](https://livingwellwithepilepsy.com/epilepsy-stories/when-a-seizure-happens-at-work.html) **Published:** July 20, 2018 **Author:** Guest Contributor **Excerpt:** It was a usual Tuesday at work filled with meetings and upcoming projects. Alison lost time in the afternoon and as she pieced together what happened, she realized it was a seizure. **Content:** It was a usual Tuesday at work filled with meetings, working on upcoming projects, and I was leading a community event in the evening. I had some downtime in the afternoon, which I spent catching up on emails and preparing for the evening event. I was at my desk typing an email and then I remember being on the phone with my boyfriend Preston – 40 minutes had passed. As I pieced together what happened, I realized it was a seizure. During the seizure, I sent texts to Preston letting him know I had one though I have no recollection of sending them. I checked, and I had sent a text to him saying “I may of just had a seizure. I’m not sure. I’m just really confused at my desk.” He responded “yeah sounds like you had a seizure” and proceeded to call me after that. He stayed on the phone with me until he knew the seizure was over, which is what he always does, since he’s experienced it before. --- #### Related: [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/02/IMG_4472-1.jpg "IMG_4472 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/life-with-epilepsy/relationships/epilepsy-blog-relay-beths-story-shows-love-always-has-the-last-word.html)## [Epilepsy Blog Relay™: Beth’s story shows love always has the last word](https://livingwellwithepilepsy.com/life-with-epilepsy/relationships/epilepsy-blog-relay-beths-story-shows-love-always-has-the-last-word.html) --- #### Epilepsy at Work After I realized what happened, I was hesitant to check with colleagues to see if anyone spoke with me during the seizure, since I haven’t had one where I currently work. Most colleagues know about my epilepsy, I’ve [self-disclosed](https://livingwellwithepilepsy.com/2015/leilas-ideas/leilas-ideas-stigma-in-the-workplace.html) since I don’t drive and held an educational workshop about epilepsy. I work in public health and I felt it was a critical population to educate about epilepsy and epilepsy first aid. My hesitation about asking if anyone had witnessed my seizure came from previous discouraging comments I had received after self-disclosing my condition. [I thought about keeping my seizure a secret](https://livingwellwithepilepsy.com/2015/leilas-ideas/leilas-ideas-stigma-in-the-workplace.html) since people don’t always know how to properly respond and I didn’t want colleagues to think I’m not capable of doing my job, particularly in this case since I had an event in the evening. I ended up asking a few of my colleagues I’m close with if they had stopped by my office between 3:00PM – 3:40PM when my seizure occurred, they had not so didn’t witness anything. I don’t like having seizures at work and I assume others don’t either, I find them emotionally exhausting for many reasons, particularly since I get bombarded with so many questions. It’s happened a handful of times now, but I know others can relate to this, which is why I felt it was important to share my story. I didn’t let the seizure stop me from leading the event that evening, although all I wanted to do was go home and lay down, which is what I did when it ended. And I’m thankful for my colleagues at work who have become good friends, since their support makes it easier to deal with a seizure at work. --- #### Related: #### Jessica Keenan Smith on the ADA and disclosing at work --- #### Author Bio Alison Kukla was diagnosed 13 years ago while she was a freshman in college. She will graduate in 2018 with a Masters in Public Health, from the Rollins School of Public Health at Emory University. Currently Alison is the Population Health Coordinator at the Norfolk Department of Health. Previously she worked for the Obama Administration for 7 years at the White House and as an EPA Volunteer. She is heavily engaged in the epilepsy community as a board member for the Epilepsy Foundation of VA, as a volunteer with CUREEpilepsy, and as a team leader for the Epilepsy Foundation’s Learning Healthcare System Project. #### Your turn: Have you had a seizure at work? What was your experience? Share in the comments here, or on [instagram](https://www.instagram.com/livingwellwithepilepsy/). --- ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Epilepsy Wellness, Life With Epilepsy, Work **Tags:** career, seizure at work, Work --- ### [Epilepsy Blog Relay: Kat takes on temporal lobe epilepsy](https://livingwellwithepilepsy.com/life-with-epilepsy/kat-takes-on-temporal-lobe-epilepsy.html) **Published:** November 5, 2018 **Author:** Guest Contributor **Excerpt:** Kat takes on living with temporal lobe epilepsy from a personal perspective **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2015/05/Kathryn-Slagle-300x300.jpg "Kathryn Slagle – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/portfolio/june-6-kathryn-slagle/attachment/kathryn-slagle)This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from November 1 to November 30, 2018. Follow along!*** #### Kat’s Story Kathryn writes, [Kat’s Temporal Lobe Diaries](https://ktslagle.wordpress.com). According to her blog, “Unfortunately I have seizures. It’s simply a part of my life, as much as every other thing. I am an epileptic. It does affect me every day, like motherhood, like writing, like art, like clinical depression.” --- Related article: **[Self-care is more important than ever](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/nov-18-ebr-posts/self-care-more-is-more-important-than-ever.html)**[](https://ktslagle.wordpress.com/) --- I’m one of the lucky ones. I don’t have seizures every day or every week even. It’s the side-effects of the medication that [affect me everyday](https://livingwellwithepilepsy.com/2018/livingwell/life-lessons-everyone-should-learn.html). The meds are always there dragging me down. When I mention them to my doctor, he nods and agrees they are indeed the side-effects of the medications. [READ MORE ](https://ktslagle.wordpress.com/) --- **NEXT UP:** Be sure to check out the next post by Maureen at **TWITTER CHAT:** Save the date for the #LivingWellChat on December 6 at 12 Noon ET. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/11/EBR-Nov18-150x150.png "EBR - Nov18 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/november-2018-participants)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our generous sponsors and partners! [Become a Sponsor ](https://livingwellwithepilepsy.com/2018-19-media-kit-_all) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Wellness, Life With Epilepsy, Nov 18 EBR Posts **Tags:** epilepsy, medication, seizures, side effects --- ### [Epilepsy Blog Relay: What's the deal with alcohol and epilepsy?](https://livingwellwithepilepsy.com/epilepsy-stories/whats-the-deal-with-alcohol-and-epilepsy.html) **Published:** November 10, 2018 **Author:** Rachel Ehrhardt **Excerpt:** A common question adults with epilepsy ask is, "Can you drink alcohol when you have epilepsy?" So here's some info on epilepsy and alcohol. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/10/IMG_1654-e1540829010646-252x300.jpeg "IMG_1654 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/portfolio/nov-10-rachel-ehrhardt/attachment/img_1654)***This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from November 1 to November 30, 2018. Follow along!*** #### Epilepsy in Everyday life: Interactions of Alcohol and Epilepsy Medication The theme of this week during the Epilepsy Blog Relay is, “Epilepsy in Everyday Life”. When this category was given to me I played with a few different ideas. I even started asking around my group of friends and family what was something regarding epilepsy that no one really told you when you were first put on AED’s (anti epilepsy drugs) or something you were curious about. The common theme that kept coming up was, can you drink while you are on AED’s? I think this is a topic that many people with and without seizure disorders ask about a lot. It is also one that some of us are fearful to ask our doctors. There is that nagging gut instinct of what the answer will be. According to epilepsy.com, “Seizure medicines can lower your tolerance for alcohol, so the immediate effects of alcohol consumption are greater. In other words, people get drunk faster. Rapid intoxication is a big problem because many of the side effects of these medicines are similar to the acute effects of alcohol itself. If you are sensitive to alcohol or seizure medicines, you may find the combination even worse.” In other words, those on seizure medications can feel more intoxicated after having a smaller number of drinks than others around them. I also found a few tips for those pondering the question of whether or not to drink: #### Reasons not to drink: - According to the [Epilepsy Society](https://www.epilepsysociety.org.uk/sex-drugs-and-social-life#.W94QLCdRdAZ), “Alcohol disrupts your sleep. Seizures can be triggered by tiredness for many people, so poor sleep makes seizures more likely to happen.” - Driving while on AED’s and alcohol can be extremely dangerous. Both AED’s and alcohol can affect your awareness, reflexes, coordination, and [ability to drive safely](https://www.ibe-epilepsy.org/downloads/Alcohol%20and%20Epilepsy.pdf) - Large amounts of alcohol in a short time frame is not encouraged for people on anti-seizure medications. #### Moderation is key - According to the Epilepsy Foundation, if you must, then definitely [drink in moderation](https://www.epilepsy.com/learn/triggers-seizures/alcohol). - According to the [Mayo Clinic](https://health.clevelandclinic.org/moderation-key-in-mixing-alcohol-and-epilepsy/), “The biggest risk is with people who binge drink or use alcohol excessively. This can lower seizure thresholds.” This is a topic that many people with epilepsy avoid (me being one of them). Personally, for most of my life I have not wanted many people to know that I have Epilepsy nor did I want to be treated differently than anyone else. It is a very difficult task. I know this sounds “cliché” or silly, but do not be afraid to say no when you feel uncomfortable in situations regarding drinking. Also, if you are in social situations make sure that someone around you knows that you have epilepsy and are on medications in case something happens. --- Related article:[ **Epilepsy isn’t my only story**](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/mar-18-ebr-posts/epilepsy-blog-relay-epilepsy-isnt-my-only-story.html) --- #### How to handle a social situation if you decide not to drink If you are at a bar or a cocktail party, ask the bartender for a glass of tonic water and lime or ginger ale and lime. You don’t even have to drink it. Simply by carrying it around you will fend off those pesky, “How come you are not drinking?” questions. The glass looks like a gin and tonic and people won’t bat an eye. If you are at a [party at someone’s home](https://livingwellwithepilepsy.com/2016/epilepsy-blog-relay/coping-with-the-holidays.html) fill up a red cup with water. People are unlikely to peer over the rim of your glass to see what you have in there. And always turn the question back on whoever is asking. If someone asks, “What are you drinking?” just ask them “What are YOU drinking?”. It could help you to avoid an awkward encounter, but there is always the chance that you might have to buy them a refill. #### Now your turn: How do you handle epilepsy and alcohol? Comment below! --- **NEXT UP:** Be sure to check out the next post by Fran at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/start-here) **TWITTER CHAT:** Save the date for the #LivingWellChat on December 6 at 12 Noon ET. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/11/EBR-Nov18-150x150.png "EBR - Nov18 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/november-2018-participants)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our generous sponsors and partners! [Become a Sponsor ](https://livingwellwithepilepsy.com/2018-19-media-kit-_all) ![author avatar](https://secure.gravatar.com/avatar/82d406d4460971f22d36968d14d1294a2a0c55c719c5b66a09acb2d2ad3872f2?s=300&d=mm&r=g) Rachel Ehrhardt Rachel Ehrhardt Streelman is from Houston , Texas. She has been a writer and contributor to Living Well with Epilepsy for two years. Rachel has had epilepsy since 9 months old. She comes from a family where her father, sister, and herself all have different forms of epilepsy. Rachel is married to Casey and they have a Cavapoo named Sheldon. [See Full Bio](https://livingwellwithepilepsy.com/author/rachel) [ ](https://livingwellwithepilepsy.com/author/rachel) **Categories:** Epilepsy Stories, Epilepsy Wellness, Life With Epilepsy, Nov 18 EBR Posts, Side Effects **Tags:** epilepsy and alcohol --- ### [Epilepsy Blog Relay: Allison is shedding light on epilepsy one aura at a time](https://livingwellwithepilepsy.com/life-with-epilepsy/epilepsy-blog-relay-allison-is-shedding-light-on-epilepsy-one-aura-at-a-time.html) **Published:** November 9, 2018 **Author:** Alison Zetterquist **Excerpt:** Allison is shedding light on epilepsy one aura at a time. **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/10/IMG_1111-245x300.jpeg "IMG_1111 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/portfolio/nov-9-alison-zetterquist/attachment/img_1111)This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from November 1 to November 30, 2018. Follow along!*** #### Allison’s Story I’m blessed with being able to control my tonic-clonic seizures with epilepsy medications. Nonetheless, having epilepsy haunted me, and I hid my condition for 36 years. Finally fed up with the stigma against epilepsy, I began opening up, choosing moments to tell people I knew well of my epilepsy. Its stigma is culturally based, as well as a product of ignorance. It’s up to us, through open discussions, to change the perceptions of others, doing away with the stigma. This belief prompted me to write… and write more and more. While my blog explores topics beyond stigma, at its core, encouraging those who hide their epilepsy to talk is [shedlightonepilepsy.org](http://shedlightonepilepsy.org)’s mission. --- Related article: **[When a seizure happens at work](https://livingwellwithepilepsy.com/2018/livingwell/work/when-a-seizure-happens-at-work.html)** --- #### What if you just don’t care? Care about what? Having a seizure. Well, of course I care, that is when I’m in my right mind. But my aura changes all that and, in fact, it is, er, enjoyable. Let me explain: I have tonic-clonic seizures when I forget to take my meds on schedule. For a couple of hours before then, I experience an aura/seizure, during which I have a sense of omniscience. Others’ thoughts open up to me — or so I think. I float from one thing to the next, keeping appointments and being aware of the odd looks people throw my way when I haltingly try to talk or simply don’t make sense. Those around me to whom I’m close know the telltale signs of my speech pattern. However, I used to keep my secret locked away at work, others not knowing what to make of my odd behavior. [READ MORE ](http://shedlightonepilepsy.org) --- **NEXT UP:** Be sure to check out the next post by Rachel at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/start-here) **TWITTER CHAT:** Save the date for the #LivingWellChat on December 6 at 12 Noon ET. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/11/EBR-Nov18-150x150.png "EBR - Nov18 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/november-2018-participants)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our generous sponsors and partners! [Become a Sponsor ](https://livingwellwithepilepsy.com/2018-19-media-kit-_all) ![author avatar](https://secure.gravatar.com/avatar/fcaf09bfa8329b343119c3e29e90cf3480dff78058bd75eb6c930f16cdab99ab?s=300&d=mm&r=g) Alison Zetterquist [See Full Bio](https://livingwellwithepilepsy.com/author/alisonzetterquist) [ ](https://livingwellwithepilepsy.com/author/alisonzetterquist) **Categories:** Epilepsy Wellness, Life With Epilepsy, Nov 18 EBR Posts, Stigma **Tags:** epilepsy medication, epilepsy stigma --- ### [Epilepsy Blog Relay: The Complicated Goal of Seizure Freedom](https://livingwellwithepilepsy.com/life-with-epilepsy/seizure-freedom.html) **Published:** November 11, 2019 **Author:** Jamie Wissinger **Excerpt:** After years of seizure freedom, my epilepsy reared its ugly head again with cluster seizures. As a result, my neurologist prescribed medication again. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/11/image12-e1573422163764-268x300.jpeg "image1(2) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=21690)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** #### Jamie’s Story In 2011, I started a blog about my running evolution, life as a single mom, and my journey with epilepsy. At the time, I was off medicine since it had been a substantial amount of time between seizures. My epilepsy reared its ugly head again with cluster seizures. As a result, my neurologist prescribed medication again. My doc told me I was to not give myself permission to take myself off it unless I had a doctor’s approval. Fast forward to 2014, I had another seizure when I was pregnant with my second child. This was after arguing with my doctor about not needing to proactively take a [Class D medicine](https://americanpregnancy.org/medication/medication-and-pregnancy/) that could potentially harm my unborn child. I thought I had it all under control. #### Excerpt Honestly, I know I am blessed and fortunate. I have been seizure free for 5 and a half years, and rarely have any complaints. I do have memory issues, and currently am working through those with a LOT of reminders, sticky notes, and alerts from Siri (ha- thanks iPhone). At the same time, I realize that it could be so much worse- and that is why I am an advocate for people living with Epilepsy. The majority of my life I have lived seizure free. Yes I was a premie, and had seizures in the NICU- however my next one wasn’t until I was 5 years old. Then, the following one was when I was 21. 16 years of freedom, and at that point doctors believed I had outgrew it. After that I had cluster seizures from age 21 to 30… however with years in between each one. We arent’ too sure of *why* I have them- I personally believe it was my lifestyle. Extremely stressed, in an unhealthy relationship for the first half of those 9 years, too much partying/alcohol, and two of those seizures were when I was pregnant. I have learned my lessons- and have some suggestions on ways you can improve your lifestyle with the hopes of becoming or staying seizure free. [**READ MORE**](http://jamiewissinger.com/seizure-freedom/) --- **NEXT UP:** Be sure to check out the next post tomorrow at . ![author avatar](https://secure.gravatar.com/avatar/43219f821cdcb707861d4c5d783f913a94991267fb94c4c92bbab48ec46b45b8?s=300&d=mm&r=g) Jamie Wissinger [See Full Bio](https://livingwellwithepilepsy.com/author/jmes717) [ ](https://livingwellwithepilepsy.com/author/jmes717) **Categories:** Epilepsy Wellness, Life With Epilepsy, Nov 19 EBR Posts, Seizure Triggers --- ### [Epilepsy Blog Relay: My coworkers and my epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/my-coworkers-and-my-epilepsy.html) **Published:** November 15, 2019 **Author:** Leila Shields **Excerpt:** Leila's Story: I have epilepsy and I need to figure out how I want to deal with it in the workplace with my coworkers. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/11/Screen-Shot-2019-11-15-at-8.45.35-AM-260x300.png "Screen Shot 2019-11-15 at 8.45.35 AM – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=21725)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** #### Leila’s Story I have exciting news: I got a new job! My previous one was rewarding but stressful and wasn’t doing anything good for my mental or physical health. Though it was bittersweet, I left to follow what I have wanted to do for years: be a school counselor. I work at a local high school with 2,000 students. It is so busy all the time and I love it. I can already tell how positive it has been for my health and overall life. I could go on for a while about the reasons I love working in a school (and working in this school). But this piece isn’t about how much happier I am at work! It’s about what I remembered once I started working: I have epilepsy and I need to figure out how I want to deal with it in the workplace. #### Epilepsy in the Workplace It crossed my mind initially because I needed to request off time for the [Epilepsy Awareness Day at Disneyland Expo](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/2019epilepsy-awareness-day-at-disneyland.html) in California (more to come on that in a later post). I didn’t really want to tell my boss about my epilepsy; I had avoided doing so with HR when I applied for the time off directly. He needed to also approve it, however. I told them all it was for a health conference and I was attending as one of the expo participants to help others with their health experiences and to learn more about things occurring in the field. That sounded pretty good to me! During one meeting about it though, I (without thinking about it) bluntly said it was an epilepsy conference. --- **Related: [The Americans with Disabilities Act and Epilepsy](https://livingwellwithepilepsy.com/2018/aboutepilepsy/americans-with-disabilities-act-epilepsy.html)** --- #### Telling coworkers about epilepsy I didn’t really realize what I had done until after the conversation. I was simultaneously proud of but scared for myself. I imagined what many of us do–will I be treated any differently? What does my coworker think of me now? Do I have to work harder to earn respect? I looked back on that conversation with him and realized how he didn’t appear to treat me any differently, as some people have. Now that it’s been a while since I blurted it out to him and nothing has changed. I get treated with full respect and am given responsibilities just like my coworkers. I was nervous that the topic would get brought up in an awkward way but my brain had another idea (as usual)! I told one other coworker directly about my diagnosis and she was surprised. She asked a couple of questions but also hasn’t treated me any differently. Since I went to EADDL and used social media to follow my days there, a few more coworkers have found out I have epilepsy. They haven’t said anything and I have decided I won’t either. It’s not something that concerns my daily work life and, to me, it doesn’t need to be given much thought in my workplace. It is always important to make sure that you are safe in your work environment, so telling someone at work can be wise. But you don’t HAVE to do so (at least in the United States). You need to judge how comfortable you are in the situation. Don’t assume that people will treat you different or will judge you inappropriately. If you work with understanding and kind people, you should be accepted. It is a good opportunity to spread awareness and understanding about epilepsy. --- **NEXT UP:** Be sure to check out the next post tomorrow at . ![author avatar](https://secure.gravatar.com/avatar/4cebf381fbce646cb0dbabef2348282b941c67524a3f03f08d6e328fa6c976cb?s=300&d=mm&r=g) Leila Shields Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania. [See Full Bio](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPGcgY2xpcC1wYXRoPSJ1cmwoI2NsaXAwXzM0M18xMDE2KSI+CjxwYXRoIGQ9Ik03Ljk5OTk5IDBDMTIuNDE4MyAwIDE2IDMuNTgxNzMgMTYgNy45OTk5OUMxNiAxMi4wOTAyIDEyLjkzMDMgMTUuNDYzIDguOTY5MjEgMTUuOTQxNFYxMC40NDQ3TDExLjEzMzQgMTAuNDQ0N0wxMS41ODIzIDhIOC45NjkyMVY3LjEzNTM5QzguOTY5MjEgNi40ODk0NSA5LjA5NTkxIDYuMDQyMjYgOS4zODY1NyA1Ljc1NjU2QzkuNjc3MjYgNS40NzA4NCAxMC4xMzE5IDUuMzQ2NjIgMTAuNzg3OCA1LjM0NjYyQzEwLjk1MzggNS4zNDY2MiAxMS4xMDY2IDUuMzQ4MjcgMTEuMjQyMiA1LjM1MTU3QzExLjQzOTQgNS4zNTYzOCAxMS42MDAxIDUuMzY0NjcgMTEuNzEyIDUuMzc2NDRWMy4xNjAzMkMxMS42NjczIDMuMTQ3ODkgMTEuNjE0NSAzLjEzNTQ3IDExLjU1NTQgMy4xMjMyNEMxMS40MjE0IDMuMDk1NTQgMTEuMjU0OCAzLjA2ODgzIDExLjA3NTcgMy4wNDUzN0MxMC43MDE2IDIuOTk2MzYgMTAuMjcyOSAyLjk2MTU0IDkuOTcyOTIgMi45NjE1NEM4Ljc2MTYgMi45NjE1NCA3Ljg0NjE0IDMuMjIwNjggNy4yMDcxMyAzLjc1NzQ2QzYuNDM1OTIgNC40MDUyNyA2LjA2NzM5IDUuNDU3NDggNi4wNjczOSA2Ljk0NjU5VjcuOTk5OTlINC40MTc3MlYxMC40NDQ3SDYuMDY3MzlWMTUuNzY0NEMyLjU4Mjg4IDE0Ljg5OTkgMCAxMS43NTE4IDAgNy45OTk5OUMwIDMuNTgxNzMgMy41ODE3MyAwIDcuOTk5OTkgMFoiIGZpbGw9IiM0MzQ5NjAiLz4KPC9nPgo8ZGVmcz4KPGNsaXBQYXRoIGlkPSJjbGlwMF8zNDNfMTAxNiI+CjxyZWN0IHdpZHRoPSIxNiIgaGVpZ2h0PSIxNiIgZmlsbD0id2hpdGUiLz4KPC9jbGlwUGF0aD4KPC9kZWZzPgo8L3N2Zz4K) ](https://www.facebook.com/leila.zorzie) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://lzorzie) **Categories:** Epilepsy Stories, Epilepsy Wellness, Nov 19 EBR Posts, Work --- ### [Epilepsy Blog Relay: Uncovering Widespread Work-Related Issues Associated With Epilepsy For Patients And Caregivers](https://livingwellwithepilepsy.com/life-with-epilepsy/work-related-issues-associated-with-epilepsy.html) **Published:** November 19, 2019 **Author:** Jessica K. Smith **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/10/Screen-Shot-2019-10-21-at-3.58.06-PM-300x274.png "Screen Shot 2019-10-21 at 3.58.06 PM – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2019/epilepsy-blog-relay/nov-19-ebr-posts/patient-provider-disconnect-in-epilepsy-national-survey-evaluates-perceptions.html/attachment/screen-shot-2019-10-21-at-3-58-06-pm)A new, national survey of adult epilepsy patients, caregivers and healthcare professionals (HCPs) revealed a wide range of challenges in the management of epilepsy, which affects more than three million adults in the United States.[1](#_ftn1) [SK Life Science, Inc.](https://www.sklifescienceinc.com/) engaged Kantar Health to develop the **S**eize the **T**ruth about **E**pilepsy **P**erceptions (STEP) Survey, with a goal to gain insights into the unique challenges and unmet needs within the epilepsy community.[2](#_ftn2) Patients and caregivers are challenged by the public’s lack of awareness of epilepsy in multiple ways. Among the life challenges reported within the survey, one area that showed to have a substantial impact – for both epilepsy patients and their caregivers – is the workplace and employment-related issues. The survey revealed key insights relating to epilepsy and the workplace including: - 36% of patients surveyed report not being able to focus at work because of their condition. - 33% of patients listed job discrimination as one of the negative experiences caused by epilepsy. - ~80% of patients and caregivers feel some form of isolation due to their epilepsy. - HCPs, more so than patients or caregivers, believe patients with epilepsy experience significant shame and discrimination. To learn more about workplace implications, read the full fact sheet below. It’s important to spread the word so that more can be done to help the epilepsy community. To learn more about the STEP survey and gain access to helpful resources, please visit [www.WebMD.com/EpilepsySurvey](http://www.WebMD.com/EpilepsySurvey).[![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/11/Screen-Shot-2019-10-25-at-3.49.27-PM.png "Screen Shot 2019-10-25 at 3.49.27 PM – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2019/11/STEP-Survey-Fact-Sheets_10.8.19_FINAL1-1.pdf) [\[1\]](#_ftnref1) Centers for Disease Control and Prevention. Epilepsy Fast Facts. . Accessed September 30, 2019. [\[2\]](#_ftnref2) SK Life Science, Inc. and Kantar Health. “Seize the Truth about Epilepsy Perceptions (STEP) Survey.” February 7, 2019 to March 27, 2019. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Wellness, Life With Epilepsy, Nov 19 EBR Posts, SKLifeScience, Work --- ### [5 Tips for Starting a New Job with Epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/leilas-ideas/tips-for-starting-a-new-job-with-epilepsy.html) **Published:** July 14, 2021 **Author:** Leila Shields **Content:** A while back I[![](http://livingwellwithepilepsy.com/wp-content/uploads/2016/06/129-300x225.jpg "129 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2016/leilas-ideas/epilepsy-blog-relay-not-just-people.html/attachment/129) started a new job as therapist. Having completed [graduate school](http://livingwellwithepilepsy.com/2015/leilas-ideas/getting-an-advanced-degree-with-epilepsy.html), I was so happy to be working in my field. Despite my excitement, my new job brought challenges. One of those challenges included management of my seizures. I developed new triggers and had to rework my daily routine to make sure I succeeded at my new job. Read on to find out how I navigated the first couple months of my new adventure! #### Tip 1: Keep Track of Episodes In my first couple weeks, I noticed my migraines happening more frequently. I kept track of their frequency, what happened before they started, and how long they lasted. I found a pattern to them. My head would start hurting after tense discussions with another co-worker. While I can’t avoid my co-worker forever, I can attempt to limit my interactions with this person. I started taking deep breaths before, during, and after spending time with that person to relax myself. I take a minute or two after each interaction to close my eyes and refocus my brain on my job instead of the stressful conversation I just had. If I hadn’t kept track of my migraines and found this pattern, I would still be getting migraines regularly at work. I also noticed that I had migraines at the end of the day. I took a look at what actions I did every day and realized that most of them involved staring at a screen. Even though my triggers never included spending time looking at a computer screen earlier in my life, it seemed to be a trigger now. This is a tough one–I have to use my laptop for all the paperwork that is done with my job. So, I’ve learned to monitor my time with my laptop. I limit myself to 2 hours of work at a time, after which I take a quick break by closing my eyes or doing a task that doesn’t involve a screen (making copies, writing appointments in my planner, making phone calls, etc). This way, I lower the chance of a migraine and I switch up my work day so I don’t get bored! #### Tip 2: Practice Self Care This is a huge one. As a therapist, I work with individuals to more effectively manage their lives. This can sometimes cause me to think about my job outside of work and put stress on my mind. When my brain gets stressed, I start having episodes. To prevent this, I identified things that relaxed me, such as riding my bike or taking a walk. Unfortunately, the weather isn’t always nice enough for these activities! So, I made a list of other things that helped me unwind, such as taking a bath, watching a favorite TV show, or reading a good book. Some days, even cleaning relaxes me! Whatever you can do to take your mind off of serious subjects will help your mind and overall health. #### Tip 3: Get Enough Sleep I cannot stress enough how [important](http://livingwellwithepilepsy.com/2016/leilas-ideas/leilas-ideas-excuse-sleep.html) sleep is. Our bodies rely on sleep to stay healthy. It helps us rest and reset our brains, regulate our metabolism and bodily functions, and helps manage our moods. Plus, it gives us energy to get through our days! Because our brains rely so heavily on this rest, there are consequences if you don’t get it. Seizures are more likely to occur if you aren’t getting proper sleep. Make sure to put sleep into your daily schedule. It may be hard to do but your health is most important–your body will thank you! #### Tip 4: Tell Your Employer on Your Terms (or Don’t) You can read my longer answer [here](http://livingwellwithepilepsy.com/2015/leilas-ideas/leilas-ideas-stigma-in-the-workplace.html). It is ultimately your decision. In the United States, you are not required to tell your employer about your diagnosis. That being said, it can be a good thing to do for safety purposes. You can teach your boss and/or co-workers seizure first aid. That way, if you have a seizure at work, your coworkers can spring into action with the knowledge to keep you safe. It’s also good for day-to-day interactions. I have one medication that makes me extremely tired. Even though I take it at night, sometimes I accidentally take it with my morning dose. I told my boss about this and now he knows that if he sees me super groggy, there’s a legitimate reason for it. He and I went over what actions we both need to take in this situation. It gives me peace knowing that I have put plans into action to keep me safe. --- #### Related: Check out our guide on [Epilepsy in the Workplace](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/disability-in-the-workplace.html) --- #### **Tip 5: Make It Fun** I try to make my job as fun as possible. I’ve decorated my desk, created rewards for myself when I get certain tasks done, and I jam out to the radio when I’m on my way to an appointment. I enjoy my job and find it easier to have fun when I’ve infused it with my personality. I use bright post it notes and folders for organization and I color code my planner to help me keep things straight. Keeping myself organized leaves me with less stress and personalizing it motivates me to keep doing my job! Find your own way to make your job a little more fun and you will be happier going to work…even on a Monday! #### Your Turn Have you ever had to adjust to a new job? How did you do it? Is there advice you’d give to others? Let us know in the comments below! Or [submit your story here](http://livingwellwithepilepsy.com/share-your-epilepsy-experience). ![author avatar](https://secure.gravatar.com/avatar/4cebf381fbce646cb0dbabef2348282b941c67524a3f03f08d6e328fa6c976cb?s=300&d=mm&r=g) Leila Shields Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania. [See Full Bio](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/leila.zorzie) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://lzorzie) **Categories:** Epilepsy Wellness, Jun 21 EBR Posts, Leila's Ideas, Work **Tags:** employment, Epilepsy Awareness, Epilepsy in Everyday Life, epilepsy in the workplace, Leila's Ideas, Stigma, Work --- ### [Top 5 New Year's Resolutions](https://livingwellwithepilepsy.com/life-with-epilepsy/new-years-resolutions/top-5-resolutions.html) **Published:** December 29, 2022 **Author:** Jessica K. Smith **Excerpt:** There are your standard New Year's Resolutions and then there are some that have a big impact on life with epilepsy. Check these out for ideas in your own life! **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/01/pexels-jill-wellington-3334355-scaled-e1672085666117-300x259.jpg "pexels-jill-wellington-3334355 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2023/01/pexels-jill-wellington-3334355-scaled-e1672085666117.jpg)Happy New Year a little early! I hope everyone is ready for a great new year. I know I am. Boy, this past year was a doozy. As I was cleaning up from the holiday and thinking about the new year I put together a few resolutions, some general and some epilepsy related. I thought I might share them with you all. According to all the New Year’s Resolutions lists I could find, there are always a few that float to the top. In fact I found a chart that shows how many of us default to these goals each year. [![Infographic: America's Top New Year's Resolutions for 2023 | Statista](https://cdn.statcdn.com/Infographic/images/normal/29019.jpeg)](https://www.statista.com/chart/29019/most-common-new-years-resolutions-us/ "Infographic: America's Top New Year's Resolutions for 2023 | Statista")## Epilepsy Resolutions These are great but they’re pretty generic. And they certainly won’t make any headway in the fight against epilepsy. ## My Epilepsy Resolutions **Here are a few of my goals for the coming year** 1.) Collaborate more throughout the epilepsy community 2.) Push for more scientific communication to be accessible to the community 3.) Reach more people earlier in their epilepsy journey ## Your Epilepsy Resolutions **Mike in Mississauga, Ontario, Canada said**: “My main epilepsy resolution is to raise more awareness. ” **Angela of South Jordan, Utah said**: “Forget RESOLUTIONS: make a new year REVOLUTION and fight the fear and stigma of [\#epilepsy](http://twitter.com/search?q=%23epilepsy "#epilepsy"). [\#happynewyear](http://twitter.com/search?q=%23happynewyear "#happynewyear") and here’s to a [\#seizure](http://twitter.com/search?q=%23seizure "#seizure") free new year”. **Kris of Chicago said**: “My epilepsy resolution would be to have a completely siezure-free year.” **Melissa of Palm Bay, Florida said**: “My resolution is to continue spreading the word about epilepsy and seizures. So many people think something is “wrong” or that I’m “sick.” ## Share Your Epilepsy Resolutions Comment below to share your resolution! ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Wellness, New Years Resolutions --- ### [Epilepsy Blog Relay: Epilepsy support through positive relationships](https://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-support-through-positive-relationships.html) **Published:** November 13, 2022 **Author:** Abby Gustus-Alford **Excerpt:** Abby shares about the importance of seeking out positive relationships in establishing a strong epilepsy support system. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/03/my-family-1024x750.jpg "my-family – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=17731)***This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay). Follow along!*** While I wish epilepsy didn’t affect relationships that I have, it is a part of who I am, and it affects every single relationship I have. But, I am lucky. I am so very lucky. 99.9 percent of the relationships I have are with people who are positive, supportive, compassionate, helpful and encouraging. ## Positive Relationships That said, when I think about [epilepsy and relationships](https://livingwellwithepilepsy.com/category/livingwell/relationships), the first people that come to mind are my immediate family, specifically my husband, my mom and dad, and my brother and sister-in-law. That’s my team. That’s the team that will always rally around me and that is the team who will lift me up when I am down. Those are the easy relationships many of us can relate to. ## When it’s not so easy But, what about those slightly more difficult relationships? What about the times when you share your story and it “scares” people that you are inevitably around? And, as a disclaimer, “scares” is probably a strong word, I should probably describe it as what “concerns” people that you are inevitably around. A while back, I started a [new job](https://livingwellwithepilepsy.com/2017/leilas-ideas/leilas-ideas-starting-new-job.html). It’s been a great change for me, but as you might expect, what comes with a new job, comes new relationships. What come with new relationships… explaining “my epilepsy” all over again, to a new group a people, in a new set of circumstances. You get the picture. It’s intimidating. I cannot speak for everyone, but in these circumstances, every insecurity that I had as a teenager living with epilepsy comes flooding back. I start to question myself… what if telling them changes how they see me? Will it be okay if I have a seizure and have to miss a day to recover? And so on… So, guess what? For a while, I kept it to myself. I choose (once again) to not tell people upfront. As I slowly gained confidence in my role and felt like I knew everyone better, I decided to tell people my “secret.” ## A positive surprise And, what do you know? Every response I got was the same. First, what can we do to help you if you happen to have a seizure while you are with us? Second, it was you do whatever you need to stay healthy… All of the people I was building relationships with now were supportive, compassionate and helpful. My feelings of shame and embarrassment were gone. And now, my support system is even bigger than before which is good, because I spend a lot more time at work! ![author avatar](https://secure.gravatar.com/avatar/fc6da7355dbaf3b5333da396f069a80e1cb0f14ba7b3b3c9d7276454b2c67b50?s=300&d=mm&r=g) Abby Gustus-Alford Abby Gustus Alford was diagnosed with epilepsy at the age of 12 after multiple grand mal seizures over six-mos. She has a BA from Purdue and her Master’s from Northwestern. [See Full Bio](https://livingwellwithepilepsy.com/author/abby) [ ](https://livingwellwithepilepsy.com/author/abby) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://abbyg_alford) **Categories:** Epilepsy Blog Relay, Epilepsy Wellness, Nov 22 EBR Posts, Relationships **Tags:** #epilepsyblogrelay, #epilepsysupport, #positiverelationships --- ### [Epilepsy and Vitamins: I could use your help](https://livingwellwithepilepsy.com/life-with-epilepsy/food/epilepsy-vitamins-use-help.html) **Published:** May 15, 2016 **Author:** Jessica K. Smith **Excerpt:** For a while now my doctors have wanted me to take vitamins. I know I should but I just can't bring myself to follow doctors orders. **Content:** [![IMG_3957](http://livingwellwithepilepsy.com/wp-content/uploads/2016/05/IMG_3957-300x225.jpg "vitamins – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2016/food/epilepsy-vitamins-use-help.html/attachment/img_3957)For a while now my doctors have wanted me to take vitamins. I know I should follow doctors orders. But I have tried every brand on the market and each one causes some horrible side effect or interaction with my meds. #### Bone Disease I understand why I need to take the vitamins. According to [this journal article](http://www.ncbi.nlm.nih.gov/pmc/articles/PMC321183/) by Alison Pack, MD, “A growing body of literature indicates an association between antiepileptic drugs (AEDs) and bone disease, including histologic, radiographic, and biochemical evidence.” I know I am more at risk for bone disease but just I cannot go through life burping and tooting all day. The anticonvulsant side effects are bad enough! This is a problem and I could use your advice. I really do need to find a solution. I have been on AEDs for about 30 years. Those drugs include some of the worst offenders known to cause bone disease according to Dr. Pack’s article. #### Vitamin Feedback I’d love to know how you are dealing with the vitamin issue. Have you had any side effects? Are you even taking vitamins? Leave your comments below. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Wellness, Food **Tags:** Vitamins --- ### [Epilepsy Blog Relay™: Whitney changes her relationship to food](https://livingwellwithepilepsy.com/epilepsy-blog-relay/whitney-on-food-and-epilepsy.html) **Published:** November 12, 2017 **Author:** Whitney Petit **Excerpt:** I started reading about diets and chronic illnesses but was skeptical of it all. I decided to change my relationship with food to better control my seizures. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2015/05/Whitney-Petit.jpg "Whitney Petit – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/portfolio/june-18-whitney-petit/attachment/whitney-petit)***This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from Nov. 1 to Nov. 30, 2017. Follow along!*** #### Whitney on food and epilepsy If you would have told me a year ago that food played a part in seizure management, I probably would have rolled my eyes and said thanks but no thanks for the info. I knew to avoid the foods that triggered my seizures but that was about it. I’ve shared plenty of times how much I’ve struggled with weight management throughout my life. Actually, it was 4 years ago after dropping about 80 pounds that my seizures decided to show up again after being dormant for 17 years. What I didn’t realize was that it was up to me to get them under control while continuing to lose the weight and keep it off. Over the last 2 years, I started reading more about different diets and chronic illnesses but still was skeptical of it all. I realized I had to change my relationship with food in order to have better control of my seizures. Before we dive in, I want to reiterate that what worked for me, may not work for the next person. Always talk to your doctor about any adjustments to your diets. As an epilepsy patient and advocate, I spend a lot of time researching everything. Researching medications, treatments, triggers, doctors and everything in between to take control of my seizures. It never dawned on me to pay more attention to what I was putting inside of my body (besides meds) than all of the external factors. [READ MORE ](http://www.cf-epilepsy.com/food-and-epilepsy-finding-a-healthy-balance/) *\*Please note, this post is reflective of Whitney’s experience and for informational purposes only. If you have questions about your own health care plan, we recommend you talk to your doctor or health care provider.* --- **NEXT UP:** Be sure to check out the next post tomorrow by Shantia on [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com). For the full schedule of bloggers visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). **TWITTER CHAT:** And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/13683cea3a9c0d5cc5a1f85fe87c891b4e8a666374942e9f00d375220d9131da?s=300&d=mm&r=g) Whitney Petit [See Full Bio](https://livingwellwithepilepsy.com/author/cfepilepsy) [ ](https://livingwellwithepilepsy.com/author/cfepilepsy) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://www.twitter.com/cfepilepsy) **Categories:** Epilepsy Blog Relay, Epilepsy Wellness, Food, Nov 17 EBR Posts --- ### [Epilepsy Blog Relay: Jade's keto journey](https://livingwellwithepilepsy.com/epilepsy-stories/jades-keto-journey.html) **Published:** March 12, 2019 **Author:** Guest Contributor **Excerpt:** Jade shares how she took something that was crushing her spirit (epilepsy), and turned it into what drives her. She shares her own Keto Journey with us. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/01/social-jade-bywestoncarls-0144-e1552243560740-274x300.jpg "social-jade-bywestoncarls-0144 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2019/epilepsy-blog-relay/mar-19-ebr-posts/jades-keto-journey.html/attachment/social-jade-bywestoncarls-0144)***This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) which will run from March 1 through March 31. Follow along!*** #### Jade’s Story Every morning I wake up and wonder how I will function this day with my diagnosis of Epilepsy. This used to bother me to no end and that initial thought was soon followed by negative emotions. Today it’s different. I still have that initial thought in the morning but instead of negativity and dread I am filled with excitement and passion for the purpose and direction my diagnosis has provided me. #### Finding my passion My work, my collaborations, and my constant study are wrapped up in Epilepsy and I couldn’t be happier. I took something that was crushing my spirit, breaking my soul and at times literally killing me and turned it into what drives me. --- **Related: [Searching for my passion – my quarter-life crisis](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/searching-for-my-passion-my-quarter-life-crisis.html)** --- It started with stigma, always feeling different. Constantly feeling like I was being judged on something I had no control or choice over. Many of my decisions over the years were tainted by the fact that Epilepsy was in the driver’s seat. Living 28 years in what felt like an endless struggle, I made a choice that changed it all, the choice to use food as my medicine and embrace a ketogenic lifestyle. #### A Keto Journey #### References: [Getting started with the Ketogenic Diet](https://charliefoundation.org/) [Ketosis and Epilepsy](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2898565/) [Keto for kids](https://www.chop.edu/treatments/ketogenic-diet) [More on Keto for adults](https://www.sciencedirect.com/science/article/pii/S2467981X1730015X) “Going keto” was not an easy choice and I found myself eating things I hadn’t in years (red meat for one) all while having to stick to a regimented lifestyle of measuring my macros and giving up donuts. It took me outside my comfort zone and as a result I began sharing My Epilepsy Story via social media. I was searching for a community because growing up I never had anyone that understood the struggles of Epilepsy and this made me feel different and alone. I knew I didn’t want to feel like that anymore and thankfully my social media presence brought people into my life who understood my drive…and how my diagnosis played a role in it. It led to Ross & Kara the owners of Fat Is Smart Fuel inviting me to help out at their booth at Paleof(x). That weekend they introduced me to so many people. Little did I know that creating my Instagram account would connect me to them which would then create a ripple effect. Each post on social media was a connection to someone, I was sending my story out into the world and tiny bridges were built, dots were connected and a community I had dreamed of began to form. I would have never guessed that sharing my backstory and my journey using a ketogenic diet on Instagram and Facebook would lead to so many amazing people, companies, friendships, and opportunities to help others. My small world opened up and without realizing it, I found myself becoming comfortable with talking and sharing my diagnosis in a way I never had. I no longer felt the need to be cautious or even dare I say afraid to say “I have Epilepsy”. I always knew Epilepsy was bigger than me, it always had a life of its own and anyone living with Epilepsy knows it can truly hold the control at times. The moment I was diagnosed I began the long process towards acceptance. I went from a young kid who pushed and fought through life, to an angry teenager, to a struggling young adult to a thriving 30 something who found understanding, purpose and true acceptance within the ketogenic and epilepsy communities. #### Opening up to opportunity The more open I became the more a community surrounded me and opportunities began to present themselves. No longer afraid, I said YES to any opportunity to share my story. I went on podcast interviews, shared my story on the website Life Elektrik and eventually it led to speaking at conferences and various Epilepsy support groups around the country. Each person I met even critics and doubters inspired me to do more and get more involved in sharing my ketogenic lifestyle with those struggling with Epilepsy. Each company owner I met helped me spread my story via social media and guest blog posts. All of these people and companies are part of my community and we help each other achieve the goal of helping others find a healthy lifestyle. Social Media is it’s own beast but by stepping outside the fear of stigma and sharing my Epilepsy story it led to connecting with The Ketovangelist Coaching Team, an amazing group of people helping others navigate a ketogenic lifestyle. And today, just a few years later, I am honored to be a Keto Coach for Ketovangelist. By joining the team I am going small and working one on one with others who are starting to use food as medicine to heal themselves. I believe helping one person at a time can continue the ripple of bringing change and breaking stigma. Today I am doing online coaching with people all around the world who want to find different ways to heal and feel empowered. My goal each day is to meet people where they are and help them build their own bridges and create lines of human connection to break stigmas on all levels. Ultimately my hope is that through this process they are able to find a healing peace from their personal struggles no matter what they are. #### Stamping out stigma Stigma only thrives when we don’t reach out and connect, when we don’t share our story and when we don’t seek help. Allowing stigma to be attached to Epilepsy or any other diagnosis allows it to have control. It destroys the chance of building community, connection and showing mainstream audiences that we are more than a diagnosis. By stepping out of the darkness we can bring hope, empowerment and education to those still struggling. This is why I’m a Coach, this is why I am a Storyteller, and this is why I speak out. --- ***NEXT UP:*** Be sure to check out the next post by Mike at [livingwellwithepilepsy.com ](http://livingwellwithepilepsy.com)for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay posts](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) you may have missed. [Share your story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Epilepsy Wellness, Food, Mar 19 EBR Posts, Treatments **Tags:** keto, ketogenic, Ketogenic Diet, Refractory epilepsy --- ### [Rachel's Story: The fight for her dreams while facing epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/rachels-story-the-fight-for-her-dreams-while-facing-epilepsy.html) **Published:** November 6, 2021 **Author:** Guest Contributor **Excerpt:** Despite facing over 20 seizures a day, Rachel shares her story of her journey to have the life she dreamed as a personal trainer. **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/11/IMG_20211029_075921_933-300x300.jpg "IMG_20211029_075921_933 – Living Well With Epilepsy")Today my darker side shows through, my battle, my strength, it’s not weakness. It may leave me weak after. But I fought a round in the ring to win. I made it with only five or six today seizures today. Since I found topiramate, my seizures have dropped from 20 or 25 per day, so I’ll take the 40 per month. I never say this looking for sympathy, but to show what a world looks like when a person has aggressive epilepsy like mine. The reason it scares people. One of the biggest questions my family gets is, “Is she on meds? It should cure it.” (I wish.) #### Following my dreams despite stigma Cheerful, outgoing, active. I enjoy doing stuff a person with my level of seizures should not engage in because I never know when I’m going to have one. It might five or more, but it never stops me. I live and love life and smile while doing it. My career choices reflect that, too. I am a personal trainer, I do bodybuilding (I was competitive until the epilepsy got too aggressive) and I am nutritional consultant. I believe no one should give up on their dream, even if it takes longer to get there. Unfortunately, some people judge epilepsy a character flaw! It’s a disorder I was born with, [something I’ve had deal with my whole life and in all my jobs](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/maintaining-work-life-balance-with-a-chronic-illness.html). I don’t judge them back, though. I feel sorry for those who judge me based on their lack of education. I do get embarrassed with epilepsy sometimes because seizures can cause fear in strangers. I cry from the pain, covered in bodily fluids because of the [side effects](https://livingwellwithepilepsy.com/2021/personal-epilepsy-stories/living-with-side-effects.html) of the seizures. Sometimes I hit my head or hurt myself without knowing. They are ugly to watch. But others’ attitudes never reflect me; it reflects them and the ignorance on their knowledge of the disorder. You can read about everything in a book, but unless you live with it you truly never know it. With today’s society, it seems things haven’t really changed from years before. We just have more filters to hide behind thanks to technology. Even though I’ve had this pesky disorder since I was little, it’s had its games with me. It lets me think I have control and I am winning. Some months and years, it kicks my butt. Literally dominates me. So I start again. By the gracious of the planet’s alignment and prayers, I get a break and the seizures are tolerable–still there–but I get some control. During this time, I train harder, do more sports, did more with kids. Do my best to achieve more dreams. But always active, always working on being a better version of myself for my family. #### Finding solace in family I’m grateful for little family we’ve created. My husband and my children live with this. They help me on bad days and have seen my passion for life. I don’t play by rules or I wouldn’t have my family. Or a white fluff ball giving me a kiss and helps revives me when I’m alone. This girl stays with me when I’m off or have bad days and helps me recover from seizures. She lays and cuddles with me when I can’t get out of bed and brings me to awareness when I go out of it. I’m grateful for my daughter’s pup. And moments like those. #### Integrating food and lifestyle choices into epilepsy care When we found a medication that brought the seizures to a more tolerable level, we took a the chance to try it. It brought some control, going six months without a seizure. But now I’m back in a long cycle. Here I am. New levels of increasing medication are not helping. Aggressive epilepsy plays its own game and I feel like its pawn. I makes my own moves on the chess board with exercise, clean eating, meditation, yoga, and taking my meds faithfully. Even though the [ketogenic diet](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/epilepsy-blog-relay-how-running-and-a-keto-lifestyle-keeps-seizures-at-bay.html) is designed for epilepsy like mine, it has never helped me. Many people don’t seem to understand that you cannot put everyone in one box. I stick to an anti-inflammatory diet and don’t don’t eat processed food that has zero nutritional value. I make all my stuff. It helps my epilepsy but will never stop it. Nothing will, the doc says. Because I have epilepsy and autoimmune illnesses as well, I choose how to frame my mindset. I choose to be strong, to be brave, to be healthy, to conquer, to break the glass ceiling above me. #### Framing a healthy mindset I write this to show those who feel they have met their match or limits that you always have options. You just have to see it in yourself and know you deserve it. I’m grateful for my chances in life, for every morning when I wake up and get to try again and be a better version of myself. I work on restrengthening myself because my [meds leave my body dry and weak](https://livingwellwithepilepsy.com/2013/livingwell/ask-an-epileptic-change-medications.html). I will never settle for less. You shouldn’t either. One doctor told me I could never practice my profession at my current level, that I could never be who I currently am. I saw that as an opportunity to break the glass ceiling and show I am that person. I’m grateful for family and friends who love me dearly. My husband, who helps me when I’m seizing and have collapsed. Our children, who know how to deal with situations like these, and are calm in life because of having a mom like me. I’m grateful for the opportunity to be helpful in people’s lives who look for meditation, personal training, nutrition, or spiritual guidance. I am me. I am happy for waking. I’m blessed for be given a curse and challenge because I would not not know what I could have done if I didn’t have my glitches and hardwire malfunction. I’m grateful for the journey it’s given me. You need the mind, body, and soul to be complete. Many blessings to all who read. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, Epilepsy Stories, Epilepsy Wellness, Fitness, Food, Nov 21 EBR Posts, Stigma --- ### [Epilepsy Blog Relay™: Mindful empowerment and epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/mindful-empowerment-and-epilepsy.html) **Published:** March 30, 2016 **Author:** Lainie Chait **Excerpt:** Lainie on being mindful of her own inner struggle: "I wanted so badly to cure myself of Epilepsy that I never accepted that I even had seizures." **Content:** [![me](http://livingwellwithepilepsy.com/wp-content/uploads/2016/02/me-e1459302675773-288x300.jpg "me – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/portfolio/mar-30-lainie-chait/attachment/me-3)***This post is part of the [Epilepsy Blog Relay](http://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-mar-2016-participants)™ which will run from March 1 through March 31, 2016. Follow along!*** #### Lainie’s Story The practice of being mindful enables us to observe our thoughts rather than be completely pulled into their story line. I was pulled into my own negative story line of having Epilepsy every single day and feeling that there was no control that I had over the situation. Initially, I thought that my fate was to be living a life of constant medication, side effects, grand mal seizures and anxiety, all of which we all know, is a big part of having Epilepsy. When I woke from the haze of my impending fate I realized that I wasn’t going to go down without a fight! It is my belief now that it is possible to be diagnosed with a condition like Epilepsy and not completely hand the reins of your management plan over to a doctor. I spent 8 years on massive amounts of medicine within the doctor’s office. Then I spent the next 12 years tweaking my epilepsy management plan outside of the doctor’s office. #### Mindful acceptance Over the years I have tried Reiki, Acupuncture, Bowen Therapy, Medicinal Plants, Naturopathy, Western Medicine, Hypnotherapy, Integrative Medicinal therapy which tested minerals, vitamins and nutritional deficiencies in my blood, Meditation, Hormonal balancers and the list goes on. The thing is…..they all worked on some level even though I still had seizures once a month, sometimes twice. What didn’t work was my inner struggle. I wanted so badly to cure myself of Epilepsy that I never accepted that I even had seizures. Even writing the word Epilepsy right now for this blog had me wanting to use another word in its place. It was only when I realized, through practicing mindfulness meditation and connecting with my body that finding a cure will not cure me anyway. Self love and self acceptance of what’s happening right now can be the only cure and this is not something that a doctor can write a script for, or that can be infused in a tea strainer or sold via a supplement jar. It’s so good to be walking the journey of Epilepsy empowerment with you all. ***NEXT UP: Be sure to check out tomorrow’s post on . For the full schedule of bloggers visit*[ *the March Participants gallery.* ](http://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-mar-2016-participants)** ***And don’t miss your chance to connect with bloggers during our Twitter Chat using the hashtag #LivingWellChat on March 31 at 7PM ET.*** --- ![author avatar](https://secure.gravatar.com/avatar/6741f205abb236e76a0cbb8b5f2273ea5186a2e0f7714f7742a457fe0a89a5d0?s=300&d=mm&r=g) Lainie Chait [See Full Bio](https://livingwellwithepilepsy.com/author/lainie) [ ](https://livingwellwithepilepsy.com/author/lainie) **Categories:** Epilepsy Blog Relay, Epilepsy Stories, Epilepsy Wellness, Fitness, Mar 16 EBR Posts **Tags:** Epilepsy Blog Relay, Mar 16 EBR Posts, Mindfulness --- ### [Epilepsy Blog Relay™: Balancing Fitness Goals with Epilepsy](https://livingwellwithepilepsy.com/life-with-epilepsy/fitness/finding-balance-fitness-goals-epilepsy.html) **Published:** June 7, 2016 **Author:** Abby Gustus-Alford **Excerpt:** I love it when people say, just find the right balance. It sounds so simple. But, is it really? **Content:** [![?](http://livingwellwithepilepsy.com/wp-content/uploads/2016/04/Abby-269x300.jpg "Abby – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2016/epilepsy-and-fitness/abby-writes-on-epilepsy-fitness.html/attachment/abby)*This post is part of the [Epilepsy Blog Relay™](http://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-jun-2016-participants) that will run from June 1 through June 30. Follow along and add comments to posts that inspire you!* I love it when people say, just find the right balance. It sounds so simple. But, is it really? The most common “balance” struggle we all probably hear about is finding a work-life balance. For me, though, everything has always been about finding a balance between life and epilepsy. I always find myself slightly adjusting what I’m doing to ensure that I do not have a dreaded seizure…whether it’s going to bed early because I can feel myself getting overtired or making sure I am conscious of my stress levels and being sure to take my medicine on time. There’s always a time where I am “finding a balance.” #### Balancing Fitness Goals So, how do I balance my active lifestyle with epilepsy? How do I train for a half marathon or meet my current fitness goals with epilepsy? First of all, I’ve had epilepsy for nearly twenty years… so, a lot of practice for starters. I now also know exactly what will trigger a seizure. That said, though, there are a couple rules of thumb that I always keep in the back of my mind: 1\) Have a plan. Whether your plan is to meet up with a friend or get moving as soon as you finish your work day, stick to it. My body is now used to waking up on Tuesday and Thursday mornings at 5:30. I know that’s “the plan” and it makes it much easier to stick to it. Plus, I can adjust my schedule as needed to accommodate it. 2\) Get enough sleep. I REALLY like to work out at 6 a.m. Morning workouts help me start my day off on the right foot. It wakes me up (once I get there), and it just plain and simple makes me feel good. But, on the two days a week I wake up at 5:30 a.m. I am conscious of what time I go to bed. I make sure that I do not stay up past a certain time, because that could be harmful to my body. So, make a conscious effort to get enough sleep. 3\) Listen to your body. This is kind of a cliché statement, but it’s an important one. Usually you know when your body is telling you to slow down, so thoughtfully listen next time. You might be pleasantly surprised. 4\) Mix it up. If you are training for a specific race, this might be a hard one. In my last post about the Houston Half Marathon, I was obviously committed to running. I needed to be able to make it 13.1 miles, but I find that I do better (and so does my body) when I mix up my routine. Sometimes I go to the gym, sometimes I just head outside and walk my dogs. Either way, you are being active, and that is all that matters. 5\) Celebrate successes and don’t let epilepsy bring you down! It’s not easy to meet fitness goals when you need a few more hours of sleep than the rest of the world or when you never know when your next seizure might happen. Celebrate little successes just as much as the big successes, because yes, it is a big deal when you meet any goal! --- NEXT UP: Be sure to check out the next post tomorrow on for more on Epilepsy Awareness. For the full schedule of bloggers visit [livingwellwithepilepsy.com](http://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-jun-2016-participants). And don’t miss your chance to connect with bloggers on the #LivingWellChat on June 30 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fc6da7355dbaf3b5333da396f069a80e1cb0f14ba7b3b3c9d7276454b2c67b50?s=300&d=mm&r=g) Abby Gustus-Alford Abby Gustus Alford was diagnosed with epilepsy at the age of 12 after multiple grand mal seizures over six-mos. She has a BA from Purdue and her Master’s from Northwestern. [See Full Bio](https://livingwellwithepilepsy.com/author/abby) [ ](https://livingwellwithepilepsy.com/author/abby) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://abbyg_alford) **Categories:** Epilepsy Wellness, Fitness, Jun 16 EBR Posts **Tags:** Epilepsy Blog Relay --- ### [Epilepsy and Fitness: Choosing a Charity and Giving Back](https://livingwellwithepilepsy.com/life-with-epilepsy/fitness/epilepsy-and-fitness-giving-back.html) **Published:** August 16, 2016 **Author:** Abby Gustus-Alford **Excerpt:** When you can give back to the community while doing something you love, everybody wins. Abby shares her example of giving back with Girls on the Run. **Content:** ![Girls on the Run 5k!](http://livingwellwithepilepsy.com/wp-content/uploads/2016/08/IMG_0965-300x225.jpg "IMG_0965 – Living Well With Epilepsy")*Girls on the Run 5k*Living with epilepsy has taught me that there are many different organizations around to support both those living with the disorder, as well as friends and family affected by it. Each organization is supported with volunteers who care deeply about the cause. After utilizing these resources my whole life, I decided that I wanted to pay it forward and begin giving back to the community also. So many people helped me along the way, especially the Epilepsy Foundation, that it was time for me to help others as well. #### Choosing the Charity I am passionate about helping people with epilepsy, and in fact, I volunteer often for those organizations, however I decided a long time ago that I wanted to also help another cause. I researched organizations in the Greater Houston area that focused on health, fitness, running, and exercise. That led me to an organization I fell in love with called [Girls on the Run Greater Houston](http://gotrgreaterhouston.org/). This purpose of the semester long program for girls in 3rd through 5th grade is to help them “develop and improve competence, feel confidence in who they are, develop strength of character, respond to others and oneself with care and compassion, create positive connections with peers and adults, and make a meaningful contribution to community and society.” The program also has an emphasis on running, which is what drew me to it in the first place. The girls in the program slowly train all semester for a 5K. By the end of the semester, the organization hosts a 5K run for both the girls and the public. I love the message of the organization and it pairs well with my passion for fitness and health. [![Abby Race Day](http://livingwellwithepilepsy.com/wp-content/uploads/2016/08/Abby-Race-Day-e1471305078901.jpg "Abby Race Day – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/?attachment_id=14609) #### Paying it Forward I’m a huge advocate of giving back to your community. After all, so many people have helped me along my epilepsy journey; I feel that giving back a little of my time, now that I am independent and able, is one small way to say thank you to the many people who helped me. That said, I decided this year to run alongside the girls in the 5K. I have been focused on group classes lately, so a few weeks ago knowing this race was coming up, I followed “loosely” a quick [couch to 5K ](http://www.active.com/mobile/couch-to-5k-app)[program](http://www.active.com/mobile/couch-to-5k-app) so that I would not feel too sore the next day! It worked. The event was a success, my race time was not terrible, and my heart was happy that I donated my time and effort giving back to such an amazing cause! #### Your Turn Do you participate in activities that give back to others? [Share your experience](http://livingwellwithepilepsy.com/share-your-epilepsy-experience) below and inspire others to give back as well! ![author avatar](https://secure.gravatar.com/avatar/fc6da7355dbaf3b5333da396f069a80e1cb0f14ba7b3b3c9d7276454b2c67b50?s=300&d=mm&r=g) Abby Gustus-Alford Abby Gustus Alford was diagnosed with epilepsy at the age of 12 after multiple grand mal seizures over six-mos. She has a BA from Purdue and her Master’s from Northwestern. [See Full Bio](https://livingwellwithepilepsy.com/author/abby) [ ](https://livingwellwithepilepsy.com/author/abby) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://abbyg_alford) **Categories:** Epilepsy Wellness, Fitness **Tags:** epilepsy, epilepsy and fitness, exercise, Living Well With Epilepsy, seizures --- ### [Epilepsy Blog Relay™: Creative Solutions to Seizure Triggers](https://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-creative-solutions-to-seizure-triggers.html) **Published:** March 25, 2017 **Author:** Rachel Ehrhardt **Excerpt:** Many people have asked me what my seizure triggers are. So, I thought I would tell you both my triggers and what tools I use to combat them. **Content:** ***[![](http://livingwellwithepilepsy.com/wp-content/uploads/2016/06/IMG_26581-300x300.jpg "IMG_2658(1) – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2016/blog-relay/jun-16-lwwe-posts/epilepsy-blog-relay.html/attachment/img_26581)This post is part of the [Epilepsy Blog Relay™](http://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-march-2017-participants) which will run from March 1 to March 31, 2017. Follow along!*** #### Rachel’s Story Hi y’all! I took a month away from writing and I want to thank you for coming back to tune into my monthly installment on [Living Well with Epilepsy](http://livingwellwithepilepsy.com). Many people have asked me what my seizure triggers are. So, I thought I would tell you both my triggers and what tools I use to combat them. I’m not perfect, and I know that each person is different and has different ways of dealing with them. But, believe me after sixteen years with this disease I’ve become very attune to my body and to those outlets that have helped me cope. #### My Triggers I have found a couple things that come together to make for a winning combination. My biggest triggers are stress, no sleep, and flashing lights. The lights have only been a problem for around a year, but it is a one day at a time situation with its effects on my seizures/auras. Some of my worst seizures have come from sleepless nights and uncontrollable stress. #### Dealing with Triggers **Yoga** Now is the part about how I have found ways to deal with my triggers. The theme of this week on the blog is types of creative release. One thing I have found for myself as a creative release is Bikram Yoga. Doing intense yoga pushes me way past my comfort zone into a position where I have to breathe myself out of panic attacks/ difficult seizure symptoms with Uijayi breath. If you have never done yoga, this is a type of breathing where you inhale and exhale out of your nose not mouth in a set silent counting that works for your body. It increases oxygenation and builds internal body temperature which tones the lungs, encourages free flow of oxygen, and allows the ability to regulate blood pressure. I encourage anyone who struggles with holding your breath in stressful situations to try meditation and breathing techniques. It can truly reduce your panic and allow you to listen to your body naturally. **Writing** The next thing that I’ve found as a creative release I’ve only been doing for right at a year, and that is my blog! I could have never imagined how therapeutic this would be until I tried it. It allows me to speak about my past, in the hopes of helping others. This gives me the ability to write about those experiences that have been toughest for me, without fear, knowing someone else has been through exactly what I have gone through in their own life. I originally began writing because I saw a dear friend who has a blog and I saw the relief it provided for her. She finally convinced me to write my stories down because someone needed to hear them (Megan, I am eternally grateful for your encouragement to do this). I started with just scribbling down late at night stories of my life that have changed my life both for good and bad, while showing how I dealt with them as well. Slowly I realized, others needed to hear these stories in their own journeys. I reached out to [Jessica Smith, Founder](http://livingwellwithepilepsy.com/about-us/founder-jessica-keenan-smith) of Living Well with Epilepsy, one year ago and it has been the best thing to ever happen to me. It has taught me that I am not my epilepsy and can finally show “my badge of honor” (my war stories) with those around me. I encourage you to find your voice in whatever medium that you feel comfortable whether it be journaling, starting a support group, or volunteering with newly diagnosed patients. I promise you that just getting it out will relieve your fears and change your life. [Submit Your Epilepsy Story ](http://livingwellwithepilepsy.com/share-your-epilepsy-experience) [Submit Your Epilepsy Video ](http://livingwellwithepilepsy.com/submit-a-video) #### Thank you As always, thank you for supporting me in my creative release, that is my blog. I truly am grateful. This month is the first I saw with my own eyes the impact my blog has in helping others struggling with the same issues and questions I have or have had. Believe me you guys help me just as I help you! As always, please comment below with your questions or concerns. I will get back to you as soon as I can. --- ***NEXT UP: Be sure to check out the next post tomorrow by [Alyssa](http://livingwellwithepilepsy.com) for more on epilepsy awareness. For the full schedule of bloggers visit*** [***livingwellwithepilepsy.com***](http://livingwellwithepilepsy.com/epilepsy-blog-relay)***.*** ***TWITTER CHAT: And don’t miss your chance to connect with bloggers on the [\#LivingWellChat ](http://twubs.com/livingwellchat)on March 31 at 7PM ET.*** ![author avatar](https://secure.gravatar.com/avatar/82d406d4460971f22d36968d14d1294a2a0c55c719c5b66a09acb2d2ad3872f2?s=300&d=mm&r=g) Rachel Ehrhardt Rachel Ehrhardt Streelman is from Houston , Texas. She has been a writer and contributor to Living Well with Epilepsy for two years. Rachel has had epilepsy since 9 months old. She comes from a family where her father, sister, and herself all have different forms of epilepsy. Rachel is married to Casey and they have a Cavapoo named Sheldon. [See Full Bio](https://livingwellwithepilepsy.com/author/rachel) [ ](https://livingwellwithepilepsy.com/author/rachel) **Categories:** Epilepsy Blog Relay, Epilepsy Wellness, Fitness, Mar 17 EBR Posts, Newly Diagnosed **Tags:** Epilepsy Blog Relay, Living Well With Epilepsy, Yoga --- ### [Epilepsy Blog Relay: When Giving Up Is Not An Option](https://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-alyssas-story-shadow-light.html) **Published:** June 9, 2017 **Author:** Guest Contributor **Excerpt:** When I was diagnosed with Epilepsy at the age of six, my life transformed into a monsoon. I started having trouble socially, academically, and physically. It seemed as if my world was in a downward spiral until I was introduced to softball. That is where I learned that giving up was never an option. **Content:** [![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/03/12994440_881982351927265_371268824820668212_n-300x300.jpg "Alyssa profile – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/epilepsy-blog-relay-alyssas-story-shadow-light.html/attachment/12994440_881982351927265_371268824820668212_n)*Photo credit Frank Yepiz****This post is part of the [Epilepsy Blog Relay™](http://livingwellwithepilepsy.com/epilepsy-blog-relay) which will run from June 1 to June 30, 2017. Follow along!*** #### Alyssa’s Story Haruki Murakami once said, “When you come out of the storm you won’t be the same person that walked in after.” When I was diagnosed with Epilepsy at the age of six, my life transformed into a monsoon. I started having trouble socially, academically, and physically. It seemed as if my world was in a downward spiral until I was introduced to softball. That is where I learned that giving up was never an option. Growing up I was an outgoing and troublemaking child. When I was prescribed my medication, the side effects made me a different person. At times my medication would cause me to be confused, which also caused me to urinate on myself. I remember being so upset; I was a twelve-year-old girl and knew that not everyone knew my story. I was always embarrassed and self-conscious around people because I would feel like the odd one out. If my shyness wasn’t bad enough, my grades were also not as good as I would have liked them to be. I was a child that enjoyed learning something new every day. I would always participate in class, raising my hand to share my answers until the moment I started struggling to understand what was being taught. I remember going home and my parents would ask me what we learned in school that day, but my memory was always hazy and I just couldn’t remember. It was stressful when it came time to take a test. No matter how hard I worked, I still received a low grade. There were only two subjects I did well in and they were art and music. Art and music were my two favorite subjects in elementary school. What I loved most was that we had the choice to take PE or not. I was not into sports growing up, so not being active and the effects of the medication, had bad effects on my health. I had gained almost twenty-five pounds in two years. I remember no matter how much I ate I never seemed to feel full. My Neurologist became worried about the situation and recommended I go see a cardiologist. That was the moment my life went from shadow to light. I will never forget the saying my mom continues to tell me, “Everything happens for a reason.” After the doctor performed a few tests on me, he told my parents that I needed to lose weight to avoid heart issues. My doctor said the only way to fix this was to start eating better and become more active. A few weeks later my parents decided to sign me up to play softball for an NYS league. I fell in love with the sport and still continue to play till this day. [![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/03/13886461_956295697829263_7977235842791845189_n.jpg "Alyssa hands with softball – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/epilepsy-blog-relay-alyssas-story-shadow-light.html/attachment/13886461_956295697829263_7977235842791845189_n)*Photo credit Rebecca Shaw*It has been seven years since I started playing softball and I must say it has impacted my life in many ways. Thanks to softball I have been seizure free for seven years and med free for three years. After my doctor took me off my medication my senior year of high school I started getting better grades in school and decided I wanted to go to college to be a teacher. A few things that run through my mind every time I am on the field are, “If I would have never started playing softball would I have all the friends I have today?” “Would I be in college playing for my dream team?” Even if my questions could not be answered, I cannot be more thankful for the life I have today. That is how I learned quitting is never an option in sports and in life. I know that if I work hard and believe strong enough, I can accomplish all my goals and dreams. --- **[![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/05/June-2017-Epilepsy-Blog-Relay_square1-150x150.png "June 2017 Epilepsy Blog Relay_square(1) – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants/attachment/june-2017-epilepsy-blog-relay_square1)NEXT UP:** Be sure to check out the next post tomorrow by Beth at . For the full schedule of bloggers visit [livingwellwithepilepsy.com](http://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). **TWITTER CHAT:** And don’t miss your chance to connect with bloggers on the #LivingWellChat on June 30 at 7PM ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, Epilepsy Wellness, Fitness, Jun 17 EBR Posts, Side Effects **Tags:** Epilepsy Blog Relay --- ### [Karl's Story: The Gift of Epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/the-gift-of-epilepsy.html) **Published:** April 6, 2017 **Author:** Guest Contributor **Excerpt:** In 1997, I would not have said Epilepsy was a gift. However, back then I was a 21 year old soldier on a peacekeeping mission in Bosnia. **Content:** #### [![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/04/17634347_10158427295390052_1716418368015418758_n.jpg "17634347_10158427295390052_1716418368015418758_n – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/personal-epilepsy-stories/the-gift-of-epilepsy.html/attachment/17634347_10158427295390052_1716418368015418758_n)Karl’s Story In October 1997, when I woke up on a bed in the middle of a busy hospital I would not have said Epilepsy was a gift. In fact, I think my first words are not appropriate for this story, however that was when I was a 21 year old soldier on a peacekeeping mission in Bosnia. #### A Soldier Re-examines His Life Waking up that night, after having my first Tonic-Clonic seizure, I immediately began to think about my career as a soldier and of all the things I would not be able to do anymore. This experience was not my first exposure to epilepsy because I watched how it affected my younger sister’s life since she was 6 years old. Life was not easy for her, especially as she got older and so I imagined that in addition to not being able to fulfill my duties as a soldier, I was on my way to a drastically altered lifestyle. At that point of my life, I was a young adult, an infantry soldier, a hockey player, I loved to mountain bike and I never once gave thought to not being able to drive. As many of you reading this can relate, many of the important pieces of my life, those which have defined me, were swiftly taken away. No driving, no hockey, no mountain biking, no more brotherhood as a soldier and no more control of my life. At that point, everything was unknown and I was not in control. So I did what many other people did when faced with sudden health changes, I started drinking more alcohol, abusing drugs and mistreating people who I was close to. I suppose this behaviour was to protect myself from the truth that what I should have been doing was taking care of my health, owning my situation and looking for more wholesome ways to be grateful that I was alive. If I am being honest, at that time I was still fairly healthy given the circumstances. After a period of time living in anger and denial, I began to process the negative emotions via competitive running. I eventually got very good at this and over time, learned that as I took better care of myself, my seizure frequently and other issues such as fatigue decreased. This began a new focus and I quit all of the drugs, alcohol and most other harmful behaviours cold turkey. There’s nothing like motivation to help stay on track. As time went on, those who I thought were friends from my harmful days of partying slowly slipped away and they were replaced with people who, for the most part, took better care of themselves and actually cared about me. At this point, I was mountain biking again, running in local races, hitting the gym regularly, slowly improving my nutrition and lifestyle habits such as sleep. #### On Finding Love Though positive changes were happening, I was still experiencing seizures, but not to the extent of when I was not caring for myself. Around this time, I fell in love and would soon get married. Jen, my wife, was the one person who could truly listen to me, and during the first year we were together I poured my emotions out, often times waking in the middle of the night sobbing after dreaming I was having a seizure. Other times I would dream about struggling to get to safety after a seizure, or about people surrounding me, watching as I helplessly tried to get away from the whispering and judgements of strangers. Jen was always available for me and I feel as though this was a time for healing. The more I talked about my experience with epilepsy and the more self help books I read I found new ways to take care of my health. Yoga and meditation are two such additions and soon I found myself enrolled in schooling to become a Personal Fitness Trainer. #### On Healthy Habits Over time, new habits replaced old patterns and my seizure frequently decreased yet again. As I became more aware of my daily routine, what worked and what didn’t, I learned that when I had regular quality sleep, consistent wholesome nutrition and time focused towards moving my body I was much healthier. I felt more in control at this time and when I began spend more alone time in nature, I found my prescription so to speak. Living with epilepsy has not been easy. I’ve been in enough ambulances (and one helicopter) and have had more than my share of hospital visits. Luckily, I eventually learned that when I have absence seizures during the day, I will likely have a tonic-clonic seizure later in the evening, so I have never been alone or with strange people upon waking in the confused state as the brain reboots. As many people who live with the disease know, no matter how controlled we may be, the thought of seizures is always there, and life must be planned accordingly. Work, where we live compared to the services we frequent, planning for holiday excursions, and preparing for the future all involve conversation and the ‘What If’ questions that must be asked. As difficult as this can be at times, it is important and I feel it helps us as we learn to navigate life. Fast forward to today, now at 40 years old, I am a happily married father of beautiful twin girls. Through epilepsy I have experienced pain, frustration, loss, worry, embarrassment and fear, however I have also learned to be empathetic towards others and I have a strong sense of compassion for those who struggle in life. This is why I say that for me, Epilepsy has been a gift. In our lives, we experience a variety of emotions, we fall down and we struggle. I believe that as we evolve as people we are exposed to life in a variety of ways so that we learn, grow and move into a more conscious experience. Living on purpose, even in the face of our struggles is what we are here to do, and Epilepsy has taught me to be thankful for each day. Had I been guided down a different path, I would not have had the same experience. It’s the combination of events in my life which have shaped me, and for that I am thankful. In my work as a Wellness Coach and Personal Trainer, I feel that my life experiences allow me to empathize with my clients while holding for them a knowing that they will one day come to know peace as well. Perhaps my gift will one day help others find the gift in their experience and that is what motivates me to take care of my health each day. As I look forward to the next 40 years of my life, I am excited by the things I am able to do, rather than being worried about the things I can not do. I wake up each day looking forward to another opportunity to grow, to learn and to have a positive impact in the lives of others. Epilepsy will likely be with me for the remainder of my time here on this earth, so I plan to make the most of what I have so that I can live a full life and in the process, I have an opportunity to model strength for my children. As long as I do these things, I will have lived a fulfilling life. #### Two Questions I will leave you with the two questions which I ask myself each day… **What is the one thing you can give up today that does not support you?** **What is the one thing you can do today that will move you in the direction you want to go in life?** I wish you the best of health. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Epilepsy Wellness, Fitness --- ### [Epilepsy Blog Relay: Why it's Important to Exercise When Living With Epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/why-its-important-to-exercise-when-living-with-epilepsy.html) **Published:** November 17, 2019 **Author:** Soo Ihm **Excerpt:** People fear that exercising will cause seizures in those who have epilepsy. In fact, regular exercise will keep you fit and improve your overall health. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/10/chestpress.jpg "chestpress – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=21553)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** #### Soo’s Story My epilepsy, like so many, is not controlled. Fortunately, most of my seizures are not severe. But my quality of life is not as good as it could be. But there are some things I do that make my life better: exercise, eat well, listen to music, and play the piano. #### Exercise and Epilepsy Exercise and epilepsy–the two seem not to go together. People fear that exercising will cause seizures. In fact, regular exercise will keep you fit and improve your overall health. As long as you know your limits and take the proper precautions, such as keeping hydrated and resting as needed, you will be fine. If you are around water (e.g., swimming pool), it is always good to have a friend or family member available just in case something happens. I’ve noticed over the last year, since I joined a circuit training class, I am feeling much better I have improved in many ways: strength, balance, and endurance. It is also a good place to share camaraderie with fellow classmates and fitness enthusiasts. Plus, the trainers make it a lot of fun. #### Diet and Epilepsy Just as important as exercise is diet. Not necessarily the ketogenic diet or Modified Atkins diet, although those are important elements in possible treatments in epilepsy. I am talking about your average, everyday healthy eating habits. Choose vegetables over chocolate chip cookies. Of course, everyone knows this. It is much harder to do because sweets are so tempting. #### Find your passion Music is another element in my life that keeps me going. I listen to different types, depending on my mood, but I mostly listen to classical music. Most people would think, That’s for the elite. It doesn’t relate to me.” You’d be surprised at how relatable it is. Classical music is often used in media very effectively. The Shawshank Redemption and The King’s Speech are great examples from the film world. There’s another aspect to music: playing an instrument. It keeps your brain active, as well works your hand-eye coordination. I took piano lessons as a child, so I had the basics of how to play. I picked up playing the piano again just last year. I started with the beginner’s book. I surprised myself at what I could do. There’s a wonderful sense of accomplishment when you work on goals and you achieve them. I think with music, the effect is more than that, because the music itself stimulates your brain. When you combine all these elements, I believe you will achieve some sort of happy medium. Although epilepsy is a challenge for all of us, it is good to know there is always support at Living Well With Epilepsy! --- **NEXT UP:** Be sure to check out the next post tomorrow at . ![author avatar](https://secure.gravatar.com/avatar/d52fbb50f14201cb1c4aa52292adb331e89b5086a1db0c1711fed2af943b5367?s=300&d=mm&r=g) Soo Ihm Soo writes the blog Soo’s Epilepsy Corner and is a regular contributor to Living Well With Epilepsy. She lives in Orange County, California. She enjoys traveling, and has been to Europe three times. Her next journey will be just as interesting, with the RNS. [See Full Bio](https://livingwellwithepilepsy.com/author/sooihm) [ ](https://livingwellwithepilepsy.com/author/sooihm) **Categories:** Epilepsy Stories, Epilepsy Wellness, Fitness, Nov 19 EBR Posts --- ### [Epilepsy Blog Relay: Epilepsy Medications and Fitness](https://livingwellwithepilepsy.com/epilepsy-stories/medications-and-fitness.html) **Published:** November 2, 2022 **Author:** Guest Contributor **Excerpt:** Vinay learned to ask about side effects as they related to his intense fitness plan whenever his neurologist changed his epilepsy medications. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/10/MLNB03611.jpeg-e1635199506334.jpg "MLNB03611.jpeg – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2021/10/MLNB03611.jpeg-e1635199506334.jpg)Vinay’s Story When I led seizure-free life for five years, I never asked my neurologist about the [side effects](https://livingwellwithepilepsy.com/2013/livingwell/ask-an-epileptic-change-medications.html) of the epilepsy medications in regards to my intense fitness schedule. When my neurologist decided to withdraw my medication, my seizures reoccurred after one year. I met with my neurologist, and he resumed my medications. In 2016, I changed my neurologist and the first thing he advised was blood work check-ups. Later on, he changed my entire course of medication and this process took about 2-3 months. During that phase, the frequency of my [focal (complex partial) seizures](https://livingwellwithepilepsy.com/2013/personal-epilepsy-stories/complex-partial-and-simple-partial-story.html) was high. I asked my neurologist why he was not prescribing me the salt which helped me in leading seizure-free life. He simply replied to check the sodium level in my blood report. He essentially told that if he prescribed me that medicine, it will impact my sodium level, which is already on the lower borderline side. This could lead to an electrolyte imbalance in my body and increase the chances of having a seizure. #### Exercise and Medications At that time, I was a rookie in endurance cycling, and this conversation immediately reminded the advice from my senior riders. They said to avoid tea or coffee during brevet cycling, as it will lead to dehydration. Considering my sodium levels, I preferred to withdraw caffeine from my lifestyle. After this, whenever my neurologist changed my medications, we discussed the details of the medicine. After these discussions, I planned my [diets](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/jun-18-ebr-posts/sharon-on-the-ketogenic-diet-and-cbd-oil.html) to avoid seizures, since endurance sports are very demanding in terms of training, too. Epilepsy is a treatable medical condition which can happen to anyone at any age. With diagnosis, we more often take care about the medications’ side effects like drowsiness, nausea, mood swings, change of personality, etc. But most of us never look at how they also impact the vitals of body, too. This can be managed choosing a healthy diet and by keeping involved in any kind of fitness activity. #### About the Author Vinay Jani is from Delhi, India, an IBE Golen Light Awardee 2021, an Ultra Randonneur, 4 times Super Randonneur, and a marathoner. He speaks regularly about managing epilepsy through fitness. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, Epilepsy Stories, Epilepsy Wellness, Fitness, Nov 22 EBR Posts --- ### [Epilepsy Blog Relay: 5 Tips for Fitness with Epilepsy](https://livingwellwithepilepsy.com/epilepsy-blog-relay/abbysaferfitness.html) **Published:** March 6, 2023 **Author:** Abby Gustus-Alford **Excerpt:** Abby shares 5 tips to help you thoughtfully choose a safe fitness program or physical activity when you are living with epilepsy. **Content:** ## ***[![](http://livingwellwithepilepsy.com/wp-content/uploads/2016/10/IMG_06192-e1477840228353-300x300.jpg "img_06192 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/portfolio/nov8-16/attachment/img_06192)***Abby’s Story Wouldn’t it be nice to not worry about what sports to play and/or what activities to partake in? I think it would! That would be a luxury! But, that’s just not a reality for those of us with [epilepsy](https://livingwellwithepilepsy.com/epilepsy "About Epilepsy: The Basics"). There are certain things that we need to think about when choosing a sport or fitness program when epilepsy is in the mix. ## Fitness with Epilepsy I grew up playing soccer. I absolutely loved soccer. To be honest, when I was in high school, my personal goal was to play in college. I was already on a select team in St. Louis and the Missouri Olympic Development Team for my age group. This was what I wanted to do. However, high school was a rough time for me. We, as a family, could not get my seizures under control. We tried all different medicines, we tried stints in the EMU to see if brain surgery was an option (it was not), and we tried adopting overall healthy habits (getting enough sleep, eating healthy, etc). Nothing worked. I was still having seizures… often. The physical nature of soccer and the head balls that I had to do in my position as a defender did not bode well for my health. As a family, we were not as concerned with the physicality of soccer, we were concerned about the head balls. Recently, my mom told me a story when I was writing my new book, [*Seize the Day*](https://www.amazon.com/Seize-Day-Inspirational-Learning-Epilepsy-ebook/dp/B01LWK5ED3), of a time during a game when I went up for a head ball against another girl near the goal. Our heads hit and she said that you could hear the collision of our two heads from the stands. She said it terrified her and that she was concerned the next seizure I had was because of that blow to my head. It probably wasn’t in the end, but we can also never prove that it didn’t have a negative impact. It was not long after that incident that my parents and I decided this sport was probably not good for my health. It was time for me to find another passion and focus my energies elsewhere. While I didn’t immediately find my fitness/activity passion at that time, I did (at that time) fall in love with student council and became the President of our senior class. When one door shuts, another one always opens. ## 5 tips for fitness with epilepsy With that, I’d like to offer a few words of wisdom about thoughtfully choosing a fitness program or physical activity to those living with epilepsy: 1. Be careful if it includes water sports or swimming. 2. Stay away from activities where you could get hurt. Contact sports, where a head injury is possible, is probably one that should be carefully considered when a person is living with epilepsy. 3. It helps to have other people around you in case of emergency. I’m not saying you always need somebody around, but have a backup plan if you are alone. 4. Tell somebody you love when to expect you back say from a long training run or bike ride. 5. Carry a medical card or jewelry that explains that you have epilepsy and what first aid you may or may not need. These days, I focus on running, spinning, and group exercise classes. As you can probably tell, it’s been a personal choice to stay away from contact sports. But, luckily I can say I love running just as much as I always loved soccer! ## Abby’s Book Be sure to check out Abby’s book, Seize the Day. ![author avatar](https://secure.gravatar.com/avatar/fc6da7355dbaf3b5333da396f069a80e1cb0f14ba7b3b3c9d7276454b2c67b50?s=300&d=mm&r=g) Abby Gustus-Alford Abby Gustus Alford was diagnosed with epilepsy at the age of 12 after multiple grand mal seizures over six-mos. She has a BA from Purdue and her Master’s from Northwestern. [See Full Bio](https://livingwellwithepilepsy.com/author/abby) [ ](https://livingwellwithepilepsy.com/author/abby) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://abbyg_alford) **Categories:** Epilepsy Blog Relay, Epilepsy Wellness, Fitness, Mar 23 EBR Posts **Tags:** #safefitness, Epilepsy Blog Relay --- ### [Epilepsy Blog Relay™: Maureen on exploring Hawaii with epilepsy](https://livingwellwithepilepsy.com/epilepsy-blog-relay/maureen-on-exploring-hawaii-with-epilepsy.html) **Published:** November 20, 2017 **Author:** Maureen Knorr **Excerpt:** Exploring Hawaii, and the Kaumana Caves, reminded me how many new experiences can seem overwhelming yet are worth it in the end. **Content:** **[![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/11/2017-06-26-15.59.15-300x225.jpg "2017-06-26 15.59.15 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=16974)This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from Nov. 1 to Nov. 30, 2017. Follow along!** I didn’t go to Hawaii to lay on the beach. I went to Hawaii for adventure. I went to dive into the ocean, to kayak over the waves, to snorkel on the reefs, to hike in the jungle, and, of course, I went for the cliff jumping. The thing with epilepsy is there is a chance at any moment you can have a seizure. Being aware that at any given moment a seizure can strike makes beautiful and exciting moments become frightening. Diving in the waves, climbing a tree, or gazing into the ocean from a viewing point become hazardous activities with epilepsy. It’s hard to explain the concern of knowing a seizure can happen at anytime, but during my Hawaii trip it was a constant battle not to let that fear interrupt my vacation. Especially while exploring the depths of a dark lava cave. #### Exploring Hawaii We found the [Kaumana Caves](http://www.bigislandhikes.com/kaumana-caves-state-park/) on a whim and although it wasn’t on the itinerary we decided to stop and see if it was worth exploring. There was no parking lot, no ticket booth, and no tour guide, just a beat up sign that read “WARNING, NO WALKWAY, NO LIGHTS, SHARPE, LOOSE ROCKS.” To be honest, this is my type of tourist attraction! At the same time, it’s attractions like these that get my heart rate going and head spinning with the “would ifs.” But that’s part of the fun, right!? [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/11/2017-06-26-16.23.23-1024x768.jpg "2017-06-26 16.23.23 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=16971) #### No more stairs! To get to the cave you must first walk down a steep set of wobbly, bright yellow [stairs](https://livingwellwithepilepsy.com/2016/epilepsy-blog-relay/jun-16-ebr-posts/maureen-finds-peace-despite-her-fears.html). The type of stairs you would see at temporary construction site. [The type of stairs I dread!](https://livingwellwithepilepsy.com/2016/epilepsy-blog-relay/jun-16-ebr-posts/maureen-finds-peace-despite-her-fears.html) The enormous mouth of the cave is bright, welcoming and full of foliage. But the moment you step inside, darkness surrounds you. Despite the massiveness of the cave I felt claustrophobic. Not being able to see more than my iPhone flashlight could illuminate made me feel vulnerable. This darkness made me ponder the consequences of a seizure (and also stirred those childhood fears of vampires!). #### If I had a seizure now… The space we had to maneuver went back and forth from large, hollow caverns that could accommodate hundreds of people, to crawling between rocks on our hands and knees. I’m not sure which were more terrifying, the grandiose caverns that seemed to never end, or climbing and squeezing carefully through the rocks, hoping to find another clearing. In either situation my [mind went to “if I had a seizure](https://livingwellwithepilepsy.com/?p=100071) right now, what would happen?” To exacerbate the situation, I was also pondering what type of cave creature could be around the corner. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/11/2017-06-26-15.44.15-2-1024x1024.jpg "2017-06-26 15.44.15-2 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=16972) In the large caverns, I wondered what it would feel like to wake up in an oversized pit seized by darkness. Regaining consciousness from a seizure can be a very frightening moment, so it’s hard to image how intense that moment would be here. I wondered if my husband would be able to keep calm and calm me. My visions of having a seizure in a tight space were worse. I thought about the possibility of being unable to move and being stuck between rocks. I understood if I got hurt, or any of us got hurt, there was no quick and easy exit strategy. Despite these considerations I kept pushing myself to move forward. We walked for about 45 minutes before we decided to turn around. I think my travel mates had their own unsettling fears urging them to turn back. Vampires, perhaps? The way out didn’t seem as terrifying. We already had discovered the paths to follow and that knowledge filled me with confidence. Enough confidence to persuades my travel companions to turn off all flashlights for an entire minute! Now, that was scary! [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/11/2017-06-26-15.56.57-1024x768.jpg "2017-06-26 15.56.57 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=16973) #### New experiences Exploring the Kaumana Caves reminded me how new experiences can seem overwhelming. But once you have done it- you’ve done it! And it’s not as nerve-racking as it once was. This applies to *all* new experiences. The first day of school, a detour on your usual route home, visiting a new place, or striking up a conversation with the new hire in the office. All new experiences can feel foreign or intimidating. Challenging yourself is how we develop our daily routine, make friends, enjoy vacations, and discover new passions. Whether it is taking the train for the first time or adventuring into the Kaumana Caves, your new experience begins with just one step. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/11/2017-06-26-16.22.48-768x1024.jpg "2017-06-26 16.22.48 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=16975) --- **NEXT UP**: Watch for Dr. Adelson’s story on [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). For the full schedule of bloggers participating in the Epilepsy Blog Relay™ visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). **TWITTER CHAT:** And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/21dd1cb76084b50fb7cccc4f2b6135cd43d1c082e5b039d6d4a99606803dc749?s=300&d=mm&r=g) Maureen Knorr I’m Maureen, and I have epilepsy. You’re probably reading this because either you have epilepsy, or you love someone that has epilepsy. Whatever sparked your curiosity, I am happy to be sharing my experiences with you. From having seizures in foreign countries to begging pharmacists that don’t speak English for medication, I can definitely say that it's been an interesting journey. Hopefully reading about my ups and downs, and my everyday and not so everyday adventures will inspire you too! Welcome to my life of living well with epilepsy! [See Full Bio](https://livingwellwithepilepsy.com/author/maureen-knorr) [ ](https://livingwellwithepilepsy.com/author/maureen-knorr) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://maureenknorr) **Categories:** Epilepsy Blog Relay, Nov 17 EBR Posts --- ### [Epilepsy Blog Relay™: Using Tech to Improve life with Epilepsy](https://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-using-tech-improve-life-epilepsy.html) **Published:** November 10, 2017 **Author:** Guest Contributor **Excerpt:** Having both epilepsy and cerebral palsy, Colleen’s life began with so much uncertainty. As she’s gotten older, tech has played a key role in our life. **Content:** **[![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/10/image3-225x300.jpeg "image3 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-nov-2017-participants/attachment/image3-3)This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from Nov. 1 to Nov. 30, 2017. Follow along!** #### Jennifer’s Story Colleen’s life began with so much uncertainty; none of her doctors knew what to expect and what she would be capable of. As she’s gotten older, we’ve had to overcome many issues, including communication and safety. But this is where technology has begun to play a key role. Having both epilepsy and cerebral palsy, I thought her crib would work for her for a while. It was lowered to as far as it would go, and I thought that it was enough to keep her safe. One day, much to my surprise, she managed to get out of her crib and crawl to the landing at the top of the stairway. Thank goodness for some left-out Easter decorations, or I don’t want to know what could have happened. I knew at that point, Colleen needed a better option. We worked with her service coordinator and I began to search online for solutions. A lot of options were large and clunky. Or, they left me wondering just *how long* they would work for. I found and petitioned for the Safety Sleeper, also known as Abrams Bed. It’s an enclosed bed designed for special needs and has been an absolute life-saver. Colleen loves it and I can sleep well at night knowing she can’t fall out or get into anything unsafe. What makes the Safety Sleeper better for our needs is that it is portable. It came with it’s own suitcase and is very easy to assemble. So, when we make our annual trip to Boston Children’s or want to go on vacation (this actually hasn’t quite happened yet!) it can be brought with us! Colleen, spent 20 days in the NICU. There was a lot of uncertainty, questions that couldn’t be fully answered. But I believed when they thought she would eventually grow out of it. The medications changed, but her EEG’s stayed the same. Throughout, I still hoped that maybe one day when we went in for that EEG, we’d finally be told that there was an improvement. She had two seizures in the NICU, and one in 2013. But there was a dramatic increase in visible seizures in 2015 (I say visible because her EEG showed seizure activity, but we couldn’t tell she was having anything, other than maybe a slight pause or some blinking). This is when I discovered the very real and very scary SUDEP. None of her doctors ever told me about the risk. I was always scared about Colleen having a seizure at night, but with her increase, I became very scared of this possibility. I remembered having seen a GoFundMe campaign for the Embrace epilepsy monitoring watch. What amazing technology! Something that could [detect seizures](https://livingwellwithepilepsy.com/?p=100071) and alert caregivers? I didn’t even know that was possible. But at that point in time, they weren’t ready. So I began to search for other options and found the SAMi camera. This gets mounted to a wall near their bed, and can detect seizure movements. This was the first step to being able to sleep better at night. I cannot say just how much better it makes you feel to know that your loved one, your child has a constant watch on them. Once the Embrace watch was released, Colleen received hers and we could not be happier. It has alerted up on a few occasions where we were able to get to Colleen and make sure she’s safe until the end of her seizure. This device is also invaluable. Through all this, even with the close monitoring, you still want what is best for your child, no matter what. And as technology also advances, so does medical innovation. I clearly remember the words of Colleen’s neurologist. She has scar tissue on her right and left frontal lobe from her birth injury. “Once the neurons are damaged, they cannot regrow.” It was crushing, but I knew it was true. I just hoped that her brain, as little as she was, would be able to “remap” itself to avoid the damage. Still, instead of accepting that as it was, I researched “neuron regeneration” when we got home from the neurologist and found two research studies; one in the U.S and one in Europe. Maybe not now, but in the future, there could be hope! But, what if there is hope *today*? As I was browsing Instagram one day, I found a post from one of the families I follow whose daughter also has cerebral palsy, and she talked about receiving stem cell therapy. I immediately began to research and even emailed the mother who had posted about the therapy. The doctor she brought her daughter to in California uses cord blood stem cells. Stem cells are thought to be able to travel to areas of the body where they are needed. They are able to bridge gaps and form new neurons. I was elated. We got in touch with the doctor and were able to raise enough money to take her. One of the things that struck me most about the doctor was when he was talking about stem cell therapy. He told me so many successes and stories of hope and miracles. The stem cells themselves are screened, as with the mom and baby, almost like if you were donating blood. They are 100% safe. I see the progress of the family on Instagram, and I had a co-worker come to me and tell me about their niece, who had had the therapy within a medical study. The therapy session itself is very easy. We traveled from New York to California. Her appointment was at 9AM. Walking talking through everything with us, we gave Colleen a dose of her emergency med to help her relax. He also programed a Microcurrent machine, which was a surprise. When you get an EEG, electrodes are placed on your head, and they can essentially read the brain waves. Microcurrent is able to focus on those areas, almost as a way to direct the stem cells where to go. Colleen’s microcurrent program was directed to her right and left frontal lobe as well as her ears (she has bilateral hearing loss). We are two months post-stem cells and so far, very happy with the results. Colleen is babbling a lot more. She’s making sounds that she never did prior. She’s experiencing far less stomach issues. She can incredibly close to needing a feeding tube as she was failure to thrive. After having to see her literally suffer for months and months, it’s amazing that she’s no longer uncomfortable and in pain. She’s more aware of her surroundings and has been more careful. She’s using her arms more and seems stronger. A week after stem cells, she went to see her neurologist. I was sad to find out there was really no change in her EEG, but that’s okay. When she’s gotten enough sleep, we’ve seen far less myoclonic jerks. After one treatment, I think it’s safe to say that this medical innovation is a life-changer and we plan on bringing Colleen back for additional treatment. Epilepsy makes me feel out of control. In some sense, I have felt that no matter what we did, we just couldn’t help her in the way we would like. What has made me feel empowered is researching. The more knowledge I have, the more prepared I can be for the uncertainties. Technology has given me peace of mind, and I have no doubt that there are and can be better options in the future. Of course, as a mother, nothing would make me happier than for there to be a cure for epilepsy. This is where, I believe, medical innovation will come into play. And based on what we’ve been able to do so far, I have faith. If you would like any more information about stem cell therapy, or any of the other things I have talked about, please feel free to email me at jennylouns@email.com --- **NEXT UP:** For the full schedule of bloggers participating in the Epilepsy Blog Relay™ visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). **TWITTER CHAT:** And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, Nov 17 EBR Posts, SUDEP --- ### [Clair's Story: Adjusting to life with seizures and to living seizure-free](https://livingwellwithepilepsy.com/epilepsy-stories/clairs-story-adjusting-to-becoming-seizure-free.html) **Published:** July 30, 2024 **Author:** Guest Contributor **Excerpt:** Clair shares her story of becoming an adult with seizures and the adjustments she made to living seizure-free as well as perspectives she gained along the way. **Content:** [![Claire and family](https://livingwellwithepilepsy.com/wp-content/uploads/2021/11/image002-1.jpg "image002 (1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2021/epilepsy-stories/clairs-story-adjusting-to-life-with-and-without-seizures.html/attachment/image002-1) ## Clair’s Story I was diagnosed with epilepsy nearly 20 years ago, just as I was heading off into the big wide world for university. It was a scary time for my family and me, having seizures so far from home. Once on medication, my seizures settled a little, and I went a year without a major seizure. Then out of the blue, I was back at square one, waking up on the floor, surrounded by worried people and an ambulance crew. Never once did I imagine I would need to adjust to life seizure-free. ([Note from Jessica](https://livingwellwithepilepsy.com/about-us/founder-jessica-keenan-smith "Meet Our Founder, Jessica Keenan Smith"): Same, Clair, same!) Skip forward ten years and I was married, had my daughter, [Riley](https://livingwellwithepilepsy.com/2021/parenting/tips-on-epilepsy-first-aid.html "Clair and daughter Riley give tips on epilepsy first aid"), and worked for a charity. My epilepsy had finally been better diagnosed. It turned out over those ten years, I was having a lot more seizures than I thought. I changed from Lamictal to Keppra and then became [pregnant](https://livingwellwithepilepsy.com/2021/personal-epilepsy-stories/epilepsy-and-pregnancy-what-to-expect.html) with my second child, Benji. Benji was born, and I was finally months living seizure-free. ## Adjusting to life seizure-free Please don’t get me wrong, I was overjoyed to be seizure-free. But I lived my whole adult life with epilepsy. I adjusted everything in case I had a seizure. I never used my degree and [worked in a job](https://livingwellwithepilepsy.com/2021/leilas-ideas/tips-for-starting-a-new-job-with-epilepsy.html) where it didn’t matter if I had one. I didn’t drive anywhere and was a pro at the buses and trains. I made sure my young daughter was safe if I had a seizure and that everyone knew where I was going all the time. I turned my epilepsy into a positive part of my life, using my free time to educate others about epilepsy and support newly diagnosed people. I didn’t want to waste my life dwelling on the negatives of epilepsy. Suddenly, I needed to start facing a life where epilepsy didn’t drive my decisions but was still there in the background…and that scared me. ## Reframing my lifestyle now seizure-free So I started by running the London Marathon! My friends and family thought I was crazy. Since my first seizure happened while [running](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/running-with-epilepsy.html), it made me feel like if I could run a marathon, then my epilepsy was controlled and I could start changing my life! So when my little boy was 18 months old, I did it! The tears on the finish line were so much more than tears of joy for completing a marathon. They were my proof my epilepsy was well controlled. Next, I needed to cope with the negatives of Keppra (for me). It made me moody and sometimes quite low. Exercise and being in nature helped me, so I made walking a huge part of our family life. It helped us all stay positive. Then I started driving again. It meant that Benji’s childhood has been very different than Riley’s. I have mixed feelings about that, but it did open up new opportunities to me. Finally, I needed to address the fact that I had a degree I had never used because I’d chosen a job that my seizures wouldn’t ruin. It was too late to become a physiotherapist, which is what my degree is in, but teaching had always been something I was interested in. So I took the plunge, did a [PGCE](https://getintoteaching.education.gov.uk/train-to-be-a-teacher/what-is-a-pgce), and I am now in my second year as a primary school teacher. It is very hard work, and I have to make sure I get a lot of [sleep](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/sleep-and-epilepsy.html) and don’t let the stress get to me, but I do really enjoy teaching. ## Finding perspective My life is good; I do live well with epilepsy. I lived well when my seizures were not controlled, and I live well now that they are. My only regret is that [epilepsy awareness](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/shonet-increases-epilepsy-awareness-in-new-ways.html) was a much bigger part of my life before. I was educating and supporting others to make life for people with epilepsy better. I just don’t have time to do that anymore, and I would feel a bit of a fraud doing so as my epilepsy is controlled. I miss the support networks and the feeling I was making the world a better place. I guess I still am, just in different ways. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Nov 21 EBR Posts --- ### [What is a rescue medication for epilepsy?](https://livingwellwithepilepsy.com/aboutepilepsy/rescue-medication/what-is-a-rescue-medication.html) **Published:** July 25, 2024 **Author:** Jessica K. Smith **Excerpt:** You may have heard the term "Rescue Medication", when used in reference to Asthma, COPD, Heart Disease or Allergies. But what is a rescue medication for epilepsy? **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/06/1-1024x1024.png "What is a Rescue Medication – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2023/06/1.png)You may have heard the term **“Rescue Medication”**, when used in reference to Asthma, COPD, Heart Disease or Allergies. But what is a rescue medication for epilepsy? ## Rescue Medication Generally when we think about rescue medication, we think of an asthma inhaler on the soccer field or an epi-pen for a bee sting. However, since stress, lack of sleep, and environmental factors (lights, etc), can all be seizure triggers for those with controlled and uncontrolled epilepsy, it is essential to consider the option of having a rescue medication on hand for epilepsy. Rescue medications are medicines that provide quick relief from acute symptoms like a seizure. ## Is it really the same? You may wonder if stopping a seizure has the same urgency as say, an asthma attack or an allergic reaction, the answer is yes. Left uncontrolled, seizures can bring about additional seizures, causing further damage to the brain. Therefore, time is essential when it comes to stopping a seizure. It is important to stop each seizure as quickly as possible. There should be a similar urgency to stopping a seizure as there is to stopping a stroke. ## How do I know if it is a rescue medication? Many of us take at least one medication to manage our seizures. But how can you know a rescue medication from your regular antiseizure medications? Well, rescue medicines are prescribed to be taken “as needed”. Whereas, your regular anticonvusant medications would be prescribed for daily or multiple times a day use. ## What is used for rescue medication? In epilepsy, the medications used for this purpose are called benzodiazepines. These medications get into the bloodstream fast and start working in the brain quickly. Epilepsy Rescue Medications are available in several different forms. Your rescue medication can be: - - Sprayed up the nose - Swallowed in pill form - Placed under the tongue to dissolve - Placed between the cheek and the gum to dissolve - Given via a gel through the anus Some common names for rescue medications you might hear include: Valtoco®, Diastat®, Diazepam, Ativan®, Lorazepam, Clonazepam, Nayzilam®, and Midazolam. ## How do I know if it’s the right rescue medication? When talking to your health care provider about your epilepsy, you can discuss your options for rescue medications. During this discussion you will want to consider the following: - - How fast will it work? - How long will it take to recover? - How will you take it? - How easy is it to use? - Who will most likely administer it? - What are the side effects? - How much does it cost? Learn more about [rescue medications](https://livingwellwithepilepsy.com/2023/aboutepilepsy/rescue-medication) in our series on the topic. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Rescue Medication **Tags:** rescue medication --- ### [The Shop: Fan Fave Epilepsy Era and Seizure Free Era shirts](https://livingwellwithepilepsy.com/shop/fan-fave-epilepsy-era-and-seizure-free-era-shirts.html) **Published:** July 19, 2024 **Author:** Jessica K. Smith **Content:** ## Fan Faves from The Shop Just wanted to share two of the hottest shirts in the LWWE Designs Etsy Shop. Epilepsy Era Shirt[![epilepsy era shirt](https://livingwellwithepilepsy.com/wp-content/uploads/2024/07/Screen-Shot-2024-07-16-at-3.36.37-PM-1024x908.png "epilepsy era shirt – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2024/07/Screen-Shot-2024-07-16-at-3.36.37-PM.png)This fun take on the Eras shirt made especially for those of us living with epilepsy is available in 11 colors and sizes from XS to 5X. [SHOP TODAY ](https://lwwedesigns.etsy.com/listing/1547544744) ## Seizure Free Era [![](https://livingwellwithepilepsy.com/wp-content/uploads/2024/07/Screen-Shot-2024-07-16-at-3.37.16-PM-1024x918.png "Screen Shot 2024-07-16 at 3.37.16 PM – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2024/07/Screen-Shot-2024-07-16-at-3.37.16-PM.png) This fun take on the Eras shirt made especially for those of us enjoying some seizure freedom is available in 4 colors and sizes from XS to 4X. [SHOP TODAY ](https://lwwedesigns.etsy.com/listing/1564466827) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Shop --- ### [4 Warning signs you may have burnout](https://livingwellwithepilepsy.com/epilepsy-stories/4-signs-of-burnout.html) **Published:** January 16, 2023 **Author:** Amanda Miller **Excerpt:** Amanda has been living with epilepsy, since she was born. But when she was hit with burnout because of school, work and planning for the future, she didn't even have a name for it. **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/08/img_431070-rotated-1024x576.jpg "img_431070 – Living Well With Epilepsy") ## Caught off guard by burnout From the beginning of my being on this planet, I was diagnosed with [epilepsy](https://livingwellwithepilepsy.com/epilepsy "About Epilepsy: The Basics"), so you can only imagine the adventure of everyday medication schedules, doctors’ appointments, surgeries, and social differences. But when I was hit with burnout because of school, work, and planning for the future, I didn’t even have a name for it. ## What is burnout Once I heard and skimmed through what “burnout” meant, I wanted to know more, so, of course, Google gave all the answers. According to an article by [Evie Muir](https://www.refinery29.com/en-us/author/evie-muir), who experienced burnout herself, “The [experience of burnout can be ferociously acute depression](https://www.refinery29.com/en-us/burnout-activism-health), and those impacted float in a cloud of despair, exhausted and on autopilot.” ## Adulting is hard The older I got, the more difficulties came my way. Starting at the age of twenty-one, I was diagnosed with [anxiety and depression](https://livingwellwithepilepsy.com/2023/livingwell/self-care-tips-to-try.html "7 Epilepsy Self-Care Tips to Try in 2023") due to social and emotional problems. Well, entering adulthood was nothing I was exposed to or explained; I didn’t even get a manual. I’m entering the junior year of being a university student at the University of Central. I’m close to the finish line, but many things are stressful on my end. Knowing that I have only one parent who continuously is investing in my education, money is a lot, and as a starving student, it’s beyond stressful. I’m getting older and my life hasn’t started. It’s becoming uncomfortable and yes, living with epilepsy and having flair-ups due to lack of sleep, stress, new medication, and simply neglecting myself has affected me. And of course, developing burnout and didn’t even know there was a name. I figured I was just exhausted. Well it’s more than that. ## What are the signs of burnout ### Fatigue According to the Cleveland Clinic, [Fatigue](https://my.clevelandclinic.org/health/symptoms/21206-fatigue) is a major symptom of burnout and can affect all areas of your life. I became too exhausted to sleep, which is a big deal since sleep is important to help manage my epilepsy. I even became too tired to have full meals. In fact I dangerously lost too much weight overall. ### Mental Overwhelm Being a student abroad, missing my family and friends, and wondering if my pathway to success was meaningful and if it makes any sense. With a ton of anxiety, worry, emotional distress, and educational expectation, I felt stripped of myself and what I could do. Even with limitations and questioning my value, I’m losing my identity, and it has become too painful and exhausting. ### Hopelessness With my dream and already having an established start as a writer, I wanted and drove for more. This ended up placing me in a dangerous adventure and sacrificing my health and my education. As months went by and my unbalanced experience of being burned out continued, I was forced to stop writing altogether. I’ve never felt so lost and filled with pain, especially when passion filled with opportunity and happiness was about to be taken from me due to my health which doesn’t have a cure, and understanding that I might not wake up due to my sacrifice and stress level. ### Everything gets under your skin According to the [World Health Organization](https://www.who.int/news/item/28-05-2019-burn-out-an-occupational-phenomenon-international-classification-of-diseases),”Burn-out is a syndrome conceptualized as resulting from chronic workplace stress that has not been successfully managed. It is characterized by three dimensions: - feelings of energy depletion or exhaustion; - increased mental distance from one’s job, or feelings of negativism or cynicism related to one’s job; and - reduced professional efficacy. ## Finding a Better Way We understand that no part of any career should ever consume our everyday lives during this adventure. Burnout turns into flare-ups that affect both my very own mental experience and physical health. Especially someone like myself, who’s not just a woman, or even just a woman of color, but a woman of color with a neurological disorder. As an individual with dreams and drive, I have no choice but must push myself ten times harder than everyone else, which can be extremely mentally and physically exhausting. I guess you can say that change is incremental, but sometimes it has a lot easier said than done. Especially when you’re trying to graduate, be healthy both neurologically and mentally, be comfortable in the category of “adulthood,” live my dream and become a professional writer. As I always say: everything is in moderation … right? ![author avatar](https://secure.gravatar.com/avatar/318c3fcd626493c961380a6af77559b6a21e78aeaeb68b661b7a30e329e3e467?s=300&d=mm&r=g) Amanda Miller Amanda Miller is a Toronto, ON-based soon-to-be graduate with a BA and AA in English. She has several years of freelance writing with articles featured in Sheen Magazine, Femi Magazine, Unwritten, SpokenBlackGirl, and many more. She's been living with epilespy since the womb and continuing to fight the good fight and spreading awareness one article and conversation at a time. Her clips can be found at . [See Full Bio](https://livingwellwithepilepsy.com/author/mandimiller) [ ](https://livingwellwithepilepsy.com/author/mandimiller) **Categories:** Epilepsy Blog Relay, Epilepsy Stories, Mental Health, Nov 22 EBR Posts **Tags:** #Burnout, #Epilespy, #Graduate, #MentalIllness, #Writer, EpilepsyWarrior --- ### [Memory and Epilepsy: Through the haze of epilepsy medication](https://livingwellwithepilepsy.com/epilepsy-stories/memory-and-epilepsy-through-the-haze-of-epilepsy-medication.html) **Published:** June 3, 2024 **Author:** Guest Contributor **Excerpt:** Every morning, I gulp a pill that transforms my past into historical fiction. The medication which manages my epilepsy, also devours my memory. **Content:** ## [![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/06/blandon-e1689005593294-1024x1024.jpg "Elizabeth – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2023/06/blandon-e1689005593294.JPG)Elizabeth’s Story Every morning, I gulp a pill that transforms my past into historical fiction. Depakote, which I began taking after my grand mal (tonic clonic) seizure in 1987, devours my memory. My imagination fills the context around documented events, such as the photo taken at a Howard Johnson’s pool in August 1973, moving from New York to Miami with my parents and my brother. I was four years old. That day, according to family lore, I jumped into the deep end without knowing how to swim. My mother, Candida, never changes the telling: how I asked if she wanted to see something funny, how I leapt before she replied, how I remained underwater. She pauses in silence for two heartbeats to accentuate her fear. I count time in syllables: hold on, dear breath. ## Memory and Epilepsy In the photo, my father and six-year-old brother are scowling. My mother, sporting a floral swim cap and a pink patterned bathing suit, is captured in perpetuity with her arms wide open, creating a spray of water. I, too, am laughing, with a white swim cap and a navy-colored swimsuit. Because my daily medicine erases the context, I imagine the photograph was taken at dinnertime. The men in our family famished to despair and my Cuban parents, immigrated recently, could only afford grilled frankfurters. Or perhaps Candida and I embraced the groovy feminism of the era, thrilled to leave behind the furniture to Pledge. Those who casually start sentences with “I am” amaze me. I am …not sure. ## As years pass In another undated photo, I am about 10 years old. My older brother has the soft belly of a child, but the long face of a pre-teen on the cusp. His Halloween costume is a western hat, red bandana, and toy pistol. Mine is a blue structured dress decorated with sequins. I wear a Mexican sombrero and long braids of brown yarn. Perhaps my mother stitched the costume while listening to her often-played Julio Iglesias LPs. The Spaniard’s lispy romantic ballads competing for attention against the mechanical whirring of her sewing machine. But I do not know if my mother and I hummed the tunes or, pouting at the jumping needle of the cheap record player, she considered divorce. I hunger to know in a way that those with better memories cannot fathom. They might believe it does not matter whether Candida hummed tunes or considered divorce. The difference haunts me. With the former, I was a good daughter bringing Candida a moment of joy. With the latter, I was a bad daughter who failed to warn her father that he needed to save his marriage. There is power in crafting a past. There is terror in knowing I might be wrong about it. I endure because tiny memories endure. The multi colored sash on my costume was worn previously during a church play. The long, brown-yarn ponytails were sewn into the interior of the sombrero. I also remember the deep end of the Howard Johnson’s pool. The baby blue water surrounds me, adult talk muffled out, the sun’s white rays dance for me along the pool wall. For two heartbeats. Long enough to realize that I was not afraid underwater. Thus, I know I am a curious person. My four-year-old self dives into the scary deep end of my past. Do you want to see something funny? Should I fear what I learn there, I will tell myself: hold on, dear breath. [SHARE YOUR EPILEPSY STORY ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories **Tags:** memory and epilepsy --- ### [Seizure First Aid: What would you do?](https://livingwellwithepilepsy.com/aboutepilepsy/epilepsy-first-aid/seizure-first-aid-what-would-you-do.html) **Published:** February 28, 2024 **Author:** Jessica K. Smith **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2010/08/pexels-mikhail-nilov-8943095-1024x683.jpg "pexels-mikhail-nilov-8943095 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2010/08/pexels-mikhail-nilov-8943095-scaled.jpg) ## Seizure First Aid A few days ago my morning started off great. I hadn’t spilled anything on myself, the car was running, and I was on time as I headed into work. But that changed when I got to the train station and discovered a woman in need of seizure first aid and onlookers thought she was having a heart attack. ## It’s Not NYC Anymore I didn’t notice people standing around at first. In my defense I lived in NYC for upwards of 15 years. There was always a bunch of people standing around looking at something. But now I live in the sleepy suburbs of NJ outside of Philadelphia. So people standing around gaping at someone at the PATCO station is not so common. As I paid my fare and walked through the turnstile my curiosity got the better of me. I turned around to find there was a woman on the floor in the midst of a convulsive seizure. I remember I grumbled something about my morning and paid my fare again to go back out the turnstile so I could help. ## No Compressions, Please! When I came into the group of people standing over the woman I discovered that the man who had called 911 seemed to be under the impression that she was having a heart attack. Argh. I found an ID bracelet which the woman had detailed instructions on. I confirmed for the man who called 911 that she was in fact having a seizure and not a heart attack. I then asked that someone move the purse away from her arm. We stayed on the line with 911 until the police came and I told them what I had seen and what was on the bracelet. Sadly, the woman was in the midst of a second convulsion when the ambulance arrived. At that point I exited stage left. Paid my fare again and reminded the man who called 911 that he did a good thing. The situation reminded me how many people don’t know what to do if someone is having a seizure. The experience reminded me how important it is to communicate to the general public what a seizure can look like and what to do to help. ## 4 C’s of Seizure First Aid I would encourage you to use the 4 C’s of seizure first aid: ## Calm ## Clear ## Comfort ## Call I love the simplicity of this message. Spread the word. Maybe next time someone is having a seizure the person calling 911 won’t think she’s having a heart attack. Here’s hoping. *Originally published in 2010.* ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy First Aid --- ### [10 Tips to Find a Great Neurologist](https://livingwellwithepilepsy.com/aboutepilepsy/how-to-find-a-great-neurologist.html) **Published:** February 26, 2024 **Author:** Jessica K. Smith **Excerpt:** Finding a doctor is hard enough. But when add a seizure (and possibly epilepsy) to the mix it can be pretty daunting. I've put together some tips to help. **Content:** ## ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/04/pexels-rodnae-productions-6129444-1024x683.jpg "pexels-rodnae-productions-6129444 – Living Well With Epilepsy")Help, I Need A Neurologist The health system is hard enough to navigate. Worrying about how to find a great neurologist when you aren’t even sure if you need one can be pretty daunting. Then when you add to that the after effects of a seizure and the possibility that you might have epilepsy, now that’s a doozy. So I’m bringing back one of my earliest articles that is still current today. In it I’ve put together some tips that might help. ## I think I had a seizure, what should I do? Often people will begin their epilepsy journey unsure that what they experienced was even a seizure. Sadly this can go on for a long time. So if you suspect you had a seizure, (assuming you are not bleeding or hurt enough to go to the emergency room) you should reach out to your health care provider to be seen as soon as possible. It’s possible your doctor may decide to take a wait and see approach or may want to do further testing to determine if the seizure is in fact caused by epilepsy. If you are fairly certain you had a seizure, it is worth determining the cause if possible. ## What now? When your primary care doctor or emergency room doctor determines that a seizure has occurred, you may be referred to a neurologist. Neurologists are specialists who treat diseases of the brain and spinal cord, peripheral nerves and muscles. It is important to remember that almost all neurologists subspecialize (focus) in some area or disease state. In other words, not every neurologist is the ideal fit to take on patients with epilepsy. Whenever epilepsy is a concern whether it is a primary diagnosis or a secondary diagnosis, it is appropriate to involve an epileptologist. Epileptologists are neurologists that specialize in epilepsy. However this option is not always locally available. So I have put together a series of steps below that will help guide you through the process of selecting a doctor that will hopefully be a good fit. ## How do I find a good neurologist? There are several steps to take to find a great neurologist (or epileptologist): 1. Find out whether or not you need a referral from your primary care provider. If you do, keep this in mind while searching for your new doctor. 2. If you have health insurance do your best to look for a neurologist that is IN NETWORK as this will be a less expensive option. 3. Take a look at the doctor’s profile before you book the appointment. 4. Remember that neurologists tend to sub-specialize in a particular area of the brain, or disease state, to properly focus their patient base or research. When reviewing the doctor’s profile pay close attention to their “Area of Focus” 5. Figure out what you want out of this new doctor. It can be helpful to make a list, physical or mental. Compiling your “must have” qualities is essential before moving on to the next step. - Do you prefer if the person is a man or a woman? - Young or old - Academic researcher or private practice - Would you like the head of a department or a long time clinician? - Someone who tells you the hard truths or makes you comfortable? 6. Check out the [Top Doctors](http://www.castleconnolly.com/) in your area. This is a good starting place to learn who has a long track record of success in the area. This is not super reliable as health systems will pay to get their docs on this list but it’s not a terrible place to start. 7. If you don’t have health insurance, then find out what options are available to you. 8. If you do have health insurance, go to the insurance company’s website. Most will have a “Find a Doctor” section. Typing in the name of the doctor you want to see will quickly show you whether the doctor is in the network or not. 9. Call and make an appointment! The longer you wait the harder it will be to get an appointment. 10. After you make the appointment you may have to go back to your primary care provider for a referral. Be sure to ask for a referral for multiple visits to save yourself the hassle of having to get a new referral each time. ## How do I fire my doctor? For future reference, there may (and probably will) be a time when you need to cut ties with your current doctor. This may seem as daunting as a task as finding the doctor, but don’t worry. To know if it is time to find a new doctor you need to: - listen to your instincts. - Make sure your doctor is meeting your needs — not his/her needs When firing your doctor, don’t play games, simply tell them that you “will be looking for another doctor and that his staff can expect a call from requesting records.” Or if the doctor is part of a group you don’t even need to have the conversation, just ask the administration team to assign you to someone else in the group. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** About Epilepsy --- ### [Living Well With Epilepsy Goes on a Podcast Tour](https://livingwellwithepilepsy.com/epilepsy-news-and-research/living-well-with-epilepsy-goes-on-a-podcast-tour.html) **Published:** February 22, 2024 **Author:** Jessica K. Smith **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2024/02/Screen-Shot-2024-02-21-at-4.45.28-PM-e1708552198313-1024x505.png "Screen Shot 2024-02-21 at 4.45.28 PM – Living Well With Epilepsy")](https://youtu.be/Vo_GWkMPFU8?si=hIsJXHAWasNdIV-3) Recently Living Well With Epilepsy went on a little bit of a podcast tour. So I wanted to share the results with you all as well as the amazing women who made space for epilepsy in their creative endeavors. ## BE THE GOOD Host Christy McCaffrey is on a mission to shed light on all the good that is being done in our world right now. She focuses on a theme of compassion, highlighting a diverse group of guests, each who are working in their own unique way to make a difference in the world. This podcast is full of goodness and inspiration! [LINK TO THE EPISODE ](https://www.christymccaffrey.com/podcast/episode/7aae6b71/living-well-with-epilepsy-with-jessica-k-smith) ## CREATIVE SPACE Host Jennifer Logue is a mission to make creativity accessible to all. Through conversations with artists, entrepreneurs, filmmakers, musicians, scientists, and so much more, we’ll be exploring creativity from every possible angle with the purpose of learning and growing in creativity together. New episodes are released every Sunday and you can listen anywhere you get your podcasts. [LINK TO THE EPISODE ](https://creativespacewithjenniferlogue.buzzsprout.com/2051924/13912841-jessica-keenan-smith-on-living-well-with-epilepsy-and-transforming-pain-into-power) ## WHAT THE EF This podcast chats and chuckles at the ridiculous, heartbreaking, and sometimes funny sh\*t that happens with epilepsy. By adding laughter to the conversation, people are able to connect, lower their guards, and open themselves to vulnerable discussions. The podcast’s goal is to explore the annoying, beautiful, and traumatic aspects of life with epilepsy, couched in laughter. Host Landis Wiedner bring in experts, celebs, and regular folks to shed light on the crazy epilepsy sh\*t that no one seems to talk about. And have a laugh about it. [LINK TO THE EPISODE ](https://www.whattheefpodcast.com/episodes/episode/58e86504/when-cancer-crashes-the-epilepsy-party-with-jessica-smith) And if you want to watch the video here it is: ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** News and Research --- ### [International Epilepsy Day: Discovering the impact of sharing one's story](https://livingwellwithepilepsy.com/epilepsy-stories/social-connections-and-epilepsy.html) **Published:** February 12, 2024 **Author:** Guest Contributor **Excerpt:** By sharing my story I discovered the social connections within the epilepsy community. Speaking about how I overcame the fear of uncertainty of having seizure was a different kind of exposure for me. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/10/MLNB01158.jpeg-e1604088951116-241x300.jpg "MLNB01158.jpeg – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2020/10/MLNB01158.jpeg-e1604088951116.jpg)Social Connections and Epilepsy After features in Indian newspapers, my first blog was published on Living Well with Epilepsy. That story focused on my background as [an endurance cyclist and a marathoner](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/epilepsy-and-wellness.html) and I shared that blog with my neurologist [Dr. Manjari Tripathi](https://www.ghdonline.org/users/manjari-tripathi/) who is also a professor in [All India Institute of Medical Sciences](https://www.aiims.edu/en.html) – Delhi and she asked me to be a patient speaker on a webinar of Indian Epilepsy Association on National Epilepsy Day. #### Public Speaking Going live and speaking about how I overcome the fear of uncertainty of having seizure and accepted my chronic illness was a different kind of exposure for me. Two weeks later I was invited on another interactive webinar where people asked me precautions I take while cycling or running. #### Safety on the road Participants also asked how I manage myself if I get seizure during exercise activities. I let listeners know that I always wear an [ID band](http://roadid.me/ro6kA) which has my SOS contacts and wear a smartwatch which gives a location to my caregivers. And most important, whenever I feel an aura of having seizure I prefer to stop just to be safe. #### On Becoming an Advocate I then joined the Samman NGO group which is the Mumbai chapter of Indian Epilepsy Association and started attending their webinar as a member. One day they set up a meeting to discuss the [50 Million Steps campaign of International Bureau of Epilepsy](https://www.ibe-epilepsy.org/). I suggested the group could do a Virtual Walkathon on a day before of the International Epilepsy Day. The group was enthusiastic and they managed the virtual event very well and raised almost 28million steps in 5weeks. Due to pandemic most of the races I enjoyed participating in were cancelled or went virtual. I did do some half marathons virtually to keep myself motivated. And I got the idea of Virtual Walkathon from these virtual events only. #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/02/webinar-image-1024x613.jpg "webinar-image – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2021/02/webinar-image.jpg) #### Social Connections and Epilepsy Though people with epilepsy may be totally different from each other in nature, behaviour, experience and when start becoming part ofa community you learn new things, unlearn old things and relearn them in a better manner. This is what I discovered by sharing my story and the social connections within the epilepsy community. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, Epilepsy Stories, Mar 21 EBR Posts --- ### [From Pinktober to Purple in November for Epilepsy Awareness Month](https://livingwellwithepilepsy.com/aboutepilepsy/pinktober-to-purple-in-november.html) **Published:** October 25, 2023 **Author:** Jessica K. Smith **Excerpt:** As an epilepsy advocate and a cancer survivor, Pinktober brings feelings of gratitude and frustration with Epilepsy Awareness month around the corner. **Content:** ## [![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/10/1-1024x1024.png "1 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2023/10/1.png)Pinktober Frustrations As an epilepsy advocate and a cancer survivor, Fall brings on simultaneous feelings of gratitude and frustration. Throughout Pinktober, I find myself a bit frustrated with the onslaught of info on breast cancer, knowing that epilepsy has very similar prevalence and and significantly worse mortality statistics. Yet, I know that Breast Cancer awareness, and the advances in treatments and standards of care that I have directly benefited from, did not come without a fight. Were it not for [Mary Lasker’s](https://profiles.nlm.nih.gov/spotlight/tl/feature/cancer) outrage and action, these changes may never have come to pass. If [Mary Lasker](https://profiles.nlm.nih.gov/spotlight/tl/feature/cancer) is not a name you are familiar with, she turned the American Cancer Society from an organization with 1,000 members and a budget of $102,000 and developed it into one with $110 Million by 1961. She also lobbied congress to establish the National Cancer Institute and was responsible for running the first radio campaign at a time when no one would speak the word cancer. I know that many who are living with an epilepsy diagnosis, as well as many other neurological diagnosis, still feel they need to hide it as people did of their cancer diagnosis in decades gone by. I know there is a lack of urgency to diagnose, treat and manage symptoms both on the part of patients and by many in the health industry, yet the mortality in epilepsy and other neurological conditions is extremely high. ## By the Numbers So lets take a look at the numbers. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/10/2-1024x1024.png "2 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2023/10/2.png) ## Cancer kills Okay but cancer kills so it’s way more urgent right? But wait a minute let’s take a look at the mortality statistics. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/10/3-1024x1024.png "3 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2023/10/3.png) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/10/4-1024x1024.png "4 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2023/10/4.png) ## All the Stats And if you are a data nerd like me, I’ve put together a little data image for anyone who wants the picture of all the info together. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/10/5-1024x1024.png "5 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2023/10/5.png) Maybe it’s time we start talking about epilepsy with the same urgency we talk about cancer. **References:** https://seer.cancer.gov/statfacts/html/breast.html https://www.cdc.gov/epilepsy/data/index.html > [About Epilepsy](https://www.dannydid.org/about-epilepsy/) https://www.frontiersin.org/articles/10.3389/fepid.2023.1081757/full#B131 https://www.epilepsy.com/complications-risks/early-death-sudep ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** About Epilepsy --- ### [Register today to attend Epilepsy Awareness Day at Disneyland](https://livingwellwithepilepsy.com/advocacy-awareness/register-today-to-attend-epilepsy-awareness-day-at-disneyland.html) **Published:** August 27, 2023 **Author:** Jessica K. Smith **Excerpt:** This Epilepsy Awareness event in CA features two days of Epilepsy Education and a free Epilepsy Expo followed by an Epilepsy Awareness Day at Disneyland. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/08/EADDL-castle-3_B4125050-4382-11EA-9609204747814332-e1693156967368-1024x947.webp "EADDL-castle-3_B4125050-4382-11EA-9609204747814332 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2023/08/EADDL-castle-3_B4125050-4382-11EA-9609204747814332-e1693156967368.webp)[Epilepsy Awareness Day at Disneyland](https://epilepsyawarenessday.org/) is an annual event operated by the Irvine based non-profit foundation Sofie’s Journey, which draws people affected by epilepsy from across the globe. The event features two days of Epilepsy Education and a free Epilepsy Expo followed by an Epilepsy Awareness Day at Disneyland. ## From Epilepsy Awareness Day Founder *“We started the event years ago to create an opportunity to drive epilepsy awareness, which we believe is the key to overcoming challenges created by epilepsy,”* stated Candy Levy, Co-Founder of Sofie’s Journey/EAD*. “At our event we bring together patients, caregivers, physicians, advocates, non-profits, services, and pharma.”* ## [![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/08/EADDL.png "EADDL – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2023/08/EADDL.png)Event Details **Epilepsy Awareness and Education Expo** Expo Day 1: Monday, October 30, 2023 Expo Day 2: Tuesday, October 31, 2023 Location: Disneyland Hotel 1150 Magic Way, Anaheim, CA 92802 Times: 9am – 5pm [REGISTER TODAY ](https://www.ticketsignup.io/TicketEvent/EADDL) **Epilepsy Awareness Day at Disneyland** Date: Wednesday, November 1, 2023 Location: Disneyland Park Time: All Day *Note: there is an additional fee to attend the awareness day at the park* [REGISTER TODAY FOR THE EXPO ](https://www.ticketsignup.io/TicketEvent/EADDL) *“It is so powerful when those impacted by epilepsy can learn from the experts, ask questions, and understand the different services and options that are available to them. Families leave feeling supported and empowered. It’s a beautiful thing!”* Tracy Dixon-Salazar, PhD, Executive Director of LGS Foundation. ## About the Event Epilepsy Awareness Day at DisneyLand is so unique because it is the only event dedicated to bringing families living with epilepsy in direct contact with experts from around that globe that manage and treat epilepsy. The expo days features more than 100 exhibitors including the newest medications, technology and advocate groups from all over the country. Both expo days feature more than 80 educational sessions on diagnosis, treatment, surgery and more. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Advocacy and Awareness **Tags:** #Epilepsy #EpilepsyAwareness --- ### [Back to School: 5 things to know about administering rescue medication](https://livingwellwithepilepsy.com/aboutepilepsy/rescue-medication/5-things-to-know-about-administering-rescue-medications.html) **Published:** August 21, 2023 **Author:** Jessica K. Smith **Excerpt:** People with epilepsy are heading back to high school, college and grad school. So here are 5 things to remember about administering rescue medications. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/06/6-1024x1024.png "6 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2023/06/6.png)People with epilepsy are heading back to high school, college and grad school. So here are 5 things to remember about administering rescue medications. ## 1. Who can administer epilepsy rescue medication? Rescue medication is designed for prompt administration by anyone—school nurse, teacher, coach, or others. Some medications are more user-friendly than others. ## 2. Is a rescue medication a replacement for antiseizure medications? No. People with epilepsy still need to take their regular antiseizure medication. Rescue medication is intended to support people with epilepsy who experience seizure clusters or extended seizures. ## 3. Can people with epilepsy carry rescue medication with them? This depends on the campus and the medication. Some rescue medications have packaging that is small, portable, discreet, and intended to be carried. ## 4. How soon after a seizure starts can a rescue medication be administered? Most rescue medications may be administered at any point during a seizure, including as soon as onset occurs. ## 5. Do I need to call EMS after administering rescue medication? It is not necessary to call EMS after administration of rescue medication unless another seizure begins. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Rescue Medication --- ### [RITUAL: My Favorite Vitamins](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ritual-collab-for-march-2023-epilepsy-blog-relay.html) **Published:** February 27, 2023 **Author:** Jessica K. Smith **Excerpt:** This March we've partnered with another Female-Founded company, Ritual. I've been using their mail-order multivitamin for about a year now and I have been really happy with it. Through this collab you can get $15 back on your first order. **Content:** **[![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/02/Screen-Shot-2023-02-27-at-1.05.15-PM-1024x680.png "Screen Shot 2023-02-27 at 1.05.15 PM – Living Well With Epilepsy")](https://mavely.app.link/e/pNB5Bfq2SBb)[Try Ritual Multivitamin, Probiotics or Protien Shakes and get $15 back on your first purchase!](https://mavely.app.link/e/pNB5Bfq2SBb)** ## [![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/02/Ritual-Collab-300x300.png "Ritual Collab – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2023/02/Ritual-Collab.png)Epilepsy Blog Relay This March we’ve partnered with another Female-Founded company, Ritual. I’ve been using their mail order multivitamin for about a year now and I have been really happy with it. Personally, I’ve never loved the idea of adding more to my pill case since I’m already taking so much. But now that I’m in menopause, at a higher risk for osteoporosis and dealing with side-effects from chemotherapy, I thought it was time to get some of the stuff I’m not able to get in my diet. The March 2023 Epilepsy Blog Relay will kick off on March 1 and run through the end of the month. If you are new to epilepsy or to Living Well With Epilepsy, I run the relay each March, June and November. It’s a chance to share stories from all over the world three times a year and raise a little extra epilepsy awareness. ## What is Ritual Katerina Schneider, CEO and Founder of Ritual is a self-proclaimed skeptic. She shares the story of being pregnant and turning the house upside down getting rid of products with ingredients she couldn’t get behind. But in her search for a prenatal vitamin she couldn’t find a brand she trusted, so she decided to build her own. According to Schneider, “We’re about pseudoscience and half-truths. So, when we set out to develop [Essential for Women](https://fave.co/41sCrUu), we wanted something simple, clean, and backed by science. We challenged some of the top scientists to reimagine the daily multivitamin for women. The result is everything we think a multivitamin should be.” ## [![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/02/Screen-Shot-2023-02-27-at-1.02.46-PM-300x266.png "Screen Shot 2023-02-27 at 1.02.46 PM – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2023/02/Screen-Shot-2023-02-27-at-1.02.46-PM.png)Why Ritual I chose to try the Ritual Multivitamin because they offer traceable and non-GMO ingredients, gluten and major allergen free, they are third party tested, vegan, and have no artificial colorants. The vitamins are delivered to my home. They have a formulation specifically designed to support healthy aging in women. And Ritual clearly outlines the ingredients in the multivitamin and why they included the specific ingredients. Oh yeah and my tummy is real sensitive to vitamins and I haven’t had a single problem with these. ## Ritual Collab Thanks to a collab with Living Well With Epilepsy, when you [try Ritual Multivitamin, Probiotics or Protien Shakes you will get $15 back ](https://mavely.app.link/e/pNB5Bfq2SBb)on your first purchase! This is only available now though so don’t miss the chance to give it a go. [TRY RITUAL ](https://mavely.app.link/e/pNB5Bfq2SBb) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Blog Relay, Mar 23 EBR Posts --- ### [Back to School: Free Webinars for School Nurses](https://livingwellwithepilepsy.com/life-with-epilepsy/school/back-to-school-free-webinars-for-school-nurses.html) **Published:** July 31, 2023 **Author:** Jessica K. Smith **Excerpt:** School nurses are encouraged to take advantage of this free educational webinar Confidence in the Classroom, that shares info on how to help students with epilepsy manage episodes of frequent seizures at school. **Content:** School nurses are encouraged to take advantage of this free educational webinar, *Confidence in the Classroom*, that shares info on how to help students with epilepsy manage episodes of frequent seizures at school. See Important Safety Information below. ## [![TUNE INTO OUR WEBINAR](https://livingwellwithepilepsy.com/wp-content/uploads/2023/07/VCO-5036_hero_v1c-1024x510.png "VCO-5036_hero_v1c – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2023/07/VCO-5036_hero_v1c.png "")Click to Register Today [Tuesday, August 8 2:00 PM – 3:00 PM ET](https://info.neurelis.com/NDE2LVVVQy0wNzkAAAGNSzURDnoptN9vKDHlzGtluMsZEY3IHV0HTW62Eu_EjMlsQL-eJPCHJp-Eb4dkU3s8wY6b_qA=) [Tuesday, August 15 3:00 PM – 4:00 PM ET](https://info.neurelis.com/NDE2LVVVQy0wNzkAAAGNSzURDmhOJtXrX9dcnCvH_duRnEpPQ4x7NVCgpYMFZqOU8DvtlpANt-P0D2TAqPc4r79zsD0=) [Wednesday, August 9 12:00 PM – 1:00 PM ET](https://info.neurelis.com/NDE2LVVVQy0wNzkAAAGNSzURDu-TaCSLwpFLDSgXpNDZF5d85LLd9Pj3k5ANYaAQZXSJrhkmzfwP0_DaQWX2fqUl6wc=) [Thursday, August 17 1:00 PM – 2:00 PM ET](https://info.neurelis.com/NDE2LVVVQy0wNzkAAAGNSzURDoZy2bknhERskceT_yINZp_LM0zFNPqr16Bro4HeFaiE5O-58w5LYG1OfvTip1tZ7T0=) ## Confidence in the Classroom Did you miss the popular webinar, ***Confidence in the Classroom***? Now’s your chance to join Dr. Lewis and Dr. Schuele. This free webinar is designed to support you in helping your students with epilepsy manage episodes of frequent seizures at school. Register today to learn more about VALTOCO® (diazepam nasal spray)––the only nasal spray seizure rescue for **students with epilepsy ages 6 and older.**1 ## Webinar Details Secure your spot for this exclusive presentation, *Confidence in the Classroom*, by selecting your preferred date and time: #### [![Dalila Watford Lewis](https://livingwellwithepilepsy.com/wp-content/uploads/2023/07/VCO-1120_Lewis_Profile_Square.png "VCO-1120_Lewis_Profile_Square – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2023/07/VCO-1120_Lewis_Profile_Square.png)Dalila Watford Lewis, MD, FAAP Associate Professor, Department of Pediatrics Division Chief, Pediatric Neurology Program Director, Child Neurology Residency Program Medical University of South Carolina Charleston, SC [REGISTER Tuesday, August 8 2:00 PM – 3:00 PM ET](https://info.neurelis.com/NDE2LVVVQy0wNzkAAAGNSzURDnoptN9vKDHlzGtluMsZEY3IHV0HTW62Eu_EjMlsQL-eJPCHJp-Eb4dkU3s8wY6b_qA=) [REGISTER Wednesday, August 9 12:00 PM – 1:00 PM ET](https://info.neurelis.com/NDE2LVVVQy0wNzkAAAGNSzURDu-TaCSLwpFLDSgXpNDZF5d85LLd9Pj3k5ANYaAQZXSJrhkmzfwP0_DaQWX2fqUl6wc=) --- #### [![Stephan Ulrich Schuele](https://livingwellwithepilepsy.com/wp-content/uploads/2023/07/VCO-1120_Schuele_Profile_Square.png "VCO-1120_Schuele_Profile_Square – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2023/07/VCO-1120_Schuele_Profile_Square.png)Stephan Ulrich Schuele, MD, MPH Professor of Neurology and Physical Medicine & Rehabilitation Northwestern University Feinberg School of Medicine Medical Director Northwestern Memorial Hospital Chicago, IL [**REGISTER** Tuesday, August 15 3:00 PM – 4:00 PM ET](https://info.neurelis.com/NDE2LVVVQy0wNzkAAAGNSzURDmhOJtXrX9dcnCvH_duRnEpPQ4x7NVCgpYMFZqOU8DvtlpANt-P0D2TAqPc4r79zsD0=) [**REGISTER** Thursday, August 17 1:00 PM – 2:00 PM ET](https://info.neurelis.com/NDE2LVVVQy0wNzkAAAGNSzURDoZy2bknhERskceT_yINZp_LM0zFNPqr16Bro4HeFaiE5O-58w5LYG1OfvTip1tZ7T0=) After registering, you will receive a confirmation email with important log-in information. **This webinar features insights on:** • Managing episodes of frequent seizures in the school setting • Role of seizure action plans and medication • Updated VALTOCO long-term safety clinical data • New resources for school nurses Advocate for THE COMPASSIONATE CHOICE for your students.2 [CLICK HERE FOR PROGRAM DATES AND DETAILS](https://info.neurelis.com/NDE2LVVVQy0wNzkAAAGNSzURDnF3vxPcHLgPNTu_coltcALyqFjW9yu3I8HneSJweTybaTLNf7tfHZoke5tCLDf0GWk=) ## IMPORTANT SAFETY INFORMATION, INCLUDING BOXED WARNING Indication VALTOCO® (diazepam nasal spray) is indicated for the acute treatment of intermittent, stereotypic episodes of frequent seizure activity (ie, seizure clusters, acute repetitive seizures) that are distinct from a patient’s usual seizure pattern in patients with epilepsy 6 years of age and older. IMPORTANT SAFETY INFORMATION WARNING: RISKS FROM CONCOMITANT USE WITH OPIOIDS; ABUSE, MISUSE, AND ADDICTION; and DEPENDENCE AND WITHDRAWAL REACTIONS • Concomitant use of benzodiazepines and opioids may result in profound sedation, respiratory depression, coma, and death. • The use of benzodiazepines, including VALTOCO, exposes users to risks of abuse, misuse, and addiction, which can lead to overdose or death. • The continued use of benzodiazepines may lead to clinically significant physical dependence. Although VALTOCO is indicated only for intermittent use, if used more frequently than recommended, abrupt discontinuation or rapid dosage reduction of VALTOCO may precipitate acute withdrawal reactions, which can be life-threatening. Adverse Reactions The most common adverse reactions (at least 4%) were somnolence, headache, and nasal discomfort. Diazepam, the active ingredient in VALTOCO, is a Schedule IV controlled substance. To report SUSPECTED ADVERSE REACTIONS, contact Neurelis, Inc. at 1‑866‑696‑3873 or FDA at 1‑800‑FDA‑1088 (www.fda.gov/medwatch). Please see full Prescribing Information, including Boxed Warning. **References:** **1.** VALTOCO® (diazepam nasal spray) Prescribing Information. Neurelis, Inc. **2.** Woodcock J: on behalf of Food and Drug Administration (FDA) Center for Drug Evaluation and Research (CDER). Petition Response Letter from FDA CDER to Arent Fox LLP. Docket No. FDA-2019-P-5121. https://www.regulations.gov/document/FDA-2019-P-5121-0011. Published January 10, 2020. Accessed January 10, 2023. --- For more on our series on rescue medications, visit: https://livingwellwithepilepsy.com/category/aboutepilepsy/rescue-medication ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** School **Tags:** rescue medication, school, school nurses --- ### [5 Reasons to work with an epilepsy health coach](https://livingwellwithepilepsy.com/epilepsy-coach/5-reasons-to-work-with-an-epilepsy-health-coach.html) **Published:** April 6, 2023 **Author:** Jessica K. Smith **Excerpt:** Enlisting an epilepsy health coach can make increasing your sense of control and decreasing your sense of isolation a heck of a lot easier! **Content:** [![epilepsy health coach](https://livingwellwithepilepsy.com/wp-content/uploads/2023/04/what-is-an-epilepsy-coach-1024x1024.png "what is an epilepsy coach – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-health-coach-programs) **Just like having a personal trainer or an executive coach, enlisting an epilepsy health coach who gets it can make increasing your sense of control and decreasing your sense of isolation when living with epilepsy a heck of a lot easier!** Being diagnosed with epilepsy can be daunting. And living with epilepsy through any type of transition can be just as overwhelming. And with so much conflicting health information out there, it can be hard to know what’s right for you and *your* body. Just like you would hire a personal trainer, physical therapist, this is when you can enlist the help of an epilepsy health coach. [LEARN MORE ](https://livingwellwithepilepsy.com/epilepsy-health-coach-programs) [BOOK A FREE 30 MINUTE CALL ](https://calendly.com/livingwellwithepilepsy/epilepsy-coaching-discovery-call) ## What is an epilepsy health coach? A health coach is someone who can provide individualized support wherever you’re at on your health journey. They are able to take the time necessary to approach your specific needs, taking into account your body, mind and your specific life circumstance. Health coaching has been shown to be a useful tool in other chronic illnesses such as cancer, heart disease and diabetes. After living with epilepsy for 30 years, and working with leading physicians and scientists for two decades, I have developed a model specific to epilepsy that considers the stigma, memory issues, medication side effects and other obstacles we face. Here are 5 reasons you might want to work with an epilepsy health coach: ## 1. Support you can’t get from your neurologist Most neurologists and primary care physicians know that sleep, nutrition, stress reduction, and exercise are important to people with epilepsy. But when was the last time you sat in your neurologists office discussing wellness practices or innovations? It’s rare that physicians have time to cover more than seizure management and drug side effects and interactions. Very few healthcare providers can offer patients much beyond “eat more vegetables.” As an epilepsy health coach, I’m prepared to get into the nitty gritty with you. For example we can talk about increasing protein and measuring your sleep to see how that impacts your memory and mood levels. Or we can talk about how to improve your social connected-ness to reduce your sense of isolation with the use of DBT skills if that’s one of your goals. It’s unlikely you will cover these things in your next neurology appointment. ## 2. Deep knowledge on living with epilepsy As founder of Living Well With Epilepsy, it’s my job to be actively expanding my knowledge of epilepsy — hunting down research, analyzing medical drug and device news, testing healthy food and green juice recipes, sharing tips, trying classes and attending courses. That means that as a coaching client you get access all this information, including fresh approaches and answers to keep your epilepsy journey interesting, and up-to-date. Can’t drive and want to try a new food box delivery service? Just ask. Looking for ideas on how to handle constipation from all the meds. Yup you got it. [LEARN MORE ](https://livingwellwithepilepsy.com/epilepsy-health-coach-programs) [BOOK A FREE 30 MINUTE CALL ](https://calendly.com/livingwellwithepilepsy/epilepsy-coaching-discovery-call) ## 3. Personalized support through a transition I have recently received an increase in calls, emails and direct messages from people in the epilepsy community. These messages are coming from people who are newly diagnosed with epilepsy and those who are going through some sort of transition such as: - a move to a new city - starting a new job - considering pregnancy - preparing for college - transitioning to a new medication - getting married When you have someone who has lived with epilepsy as your wellness co-pilot, you’ll find you are no longer alone and isolated. We can work together to develop a customized plan that takes your individual physical, emotional and lifestyle factors into account and helps you work toward your goals. We can work with together through your transition on issues like: - how to find a new doctor in your new city - how to advocate for yourself when a new doctor wants to put you on a med that could cause issues with pregnancy - how to request accommodations at work - how to establish a new sleep regimen ## 4. The advice will be safe and sound Every day questionable health fads hit the market, and some trends are downright dangerous especially to people living with epilepsy. As founder of [Living Well With Epilepsy](/) and Executive Director of the American Society for Experimental Neurotherapeutics, I have to answer to you and to leaders in the field including the NIH if my information is garbage. You will not be the first to call me out if my info is not correct. Nothing is worse than being called out by a Nobel laureate. Believe me, I know. ## 5. Support from a coach who cares Since I have lived it, I get it, epilepsy stinks. The stigma, isolation, meds, side effects all rolled up into one ball of chronic yuck, that is often underestimated. Epilepsy has an impact on your whole body. It can affect everything from how you sleep and eat to whether or not you are able to have successful relationships. I want you to reach your goals, whatever they are. [LEARN MORE ](https://livingwellwithepilepsy.com/epilepsy-health-coach-programs) [BOOK A FREE 30 MINUTE CALL ](https://calendly.com/livingwellwithepilepsy/epilepsy-coaching-discovery-call) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Coach **Tags:** #epilepsycoach, #epilepsyhealthcoach, #healthcoach --- ### [Epilepsy Blog Relay: Pregnancy planning and Epilepsy](https://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-pregnancy-planning-and-epilepsy.html) **Published:** March 9, 2023 **Author:** Guest Contributor **Excerpt:** Erica shares the story of her pregnancy planning journey, while also managing epilepsy. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2023/03/Screen-Shot-2023-03-08-at-5.10.38-PM-821x1024.png "Screen Shot 2023-03-08 at 5.10.38 PM – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2023/03/Screen-Shot-2023-03-08-at-5.10.38-PM.png)Erica shares the story of her pregnancy planning journey, while also managing epilepsy. ## Erica’s Story Kenny & I have talked about having children since before they married in 2019. We’ve always been realistic, understanding we’d likely face some degree of complications with [Epilepsy](https://livingwellwithepilepsy.com/epilepsy "About Epilepsy: The Basics") as part of the equation and that if it didn’t happen for us then we’d be ok. All was going well though. I was on pregnancy-safe [AED’s](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/adjusting-to-a-medication-change.html "Epilepsy Blog Relay: Five tips for adjusting to a medication change"), the medication seemed to be working, my seizures were responding well to my RNS device, and my doctors felt that I was ready to safely carry and deliver a baby. So the tune changed a bit and we started talking excitedly about growing our family. ## Pregnancy Planning First things first. On January 17th I had my [iud](https://my.clevelandclinic.org/health/treatments/24441-intrauterine-device-iud) – the skyla – removed, which to my understanding has the lowest amount of hormones, so I didn’t think much of the process. It ended up being a bigger deal than what I was ready for. The dizzy spells alone were enough to wish I hadn’t taken that first step at all. After about a week, I felt a little bit better, but occasionally symptoms would pop up out of nowhere such as intense headaches, body aches and fever chills. Then, on February 17th the dizzy spells came back. Only this time, I became so disoriented I couldn’t walk. I lost complete control of my legs, my arms and hands. I dreaded simply being awake, but falling asleep was next to impossible. Everything was spinning and everything hurt. ## Diagnosing in the Dark After 4 days of this, my neurologist decreased one of my AED’s in half, hypothesizing that my iud removal was having a much larger impact on my hormones and body than anyone could have anticipated, and for about a month I was taking more medication than I was able to safely handle. ## Seizures I guess you could say we’re past that hurdle (🤞🏼) but with a decrease in medication, comes an increase in seizures. Sure, they’re not terrible. My neuropace seems to catch them most of the time, but man, does it suck. Sort of feels like you take a step forward and then two giant steps back. Medication management isn’t unique to me or to epilepsy. So many people deal with this daily and I feel for them all, hard. It’s a stressful, anxiety ridden task, but we don’t have a choice other than to get through it. Hopeful to be back to a steady balanced place soon, but until then 🫖🧘🏻‍♀️🤍 [\#epilepsy](https://www.instagram.com/explore/tags/epilepsy/) *This story was first published on Instagram and can be found on Erica’s profile: [@oneintwentysixx](https://www.instagram.com/oneintwentysixx/)* ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** About Epilepsy, Epilepsy Blog Relay, Mar 23 EBR Posts, Pregnancy **Tags:** epilepsy and pregnancy, pregnancy and epilepsy --- ### [Epilepsy Blog Relay: Soo on considering CBD for epilepsy](https://livingwellwithepilepsy.com/aboutepilepsy/treatments/considering-cbd-for-epilepsy.html) **Published:** November 19, 2018 **Author:** Soo Ihm **Excerpt:** You could say I have evolved in my beliefs about alternative medicine and epilepsy. Where I was previously skeptical of medical marijuana (CBD), I am now open to the idea. **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/05/IMG_2893-e1496614362698-300x291.jpg "IMG_2893 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/portfolio/jun-8-sooihm/attachment/img_2893)This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from November 1 to November 30, 2018. Follow along!*** #### Soo’s Story Soo has been a regular contributor to the Epilepsy Blog Relay from the very beginning. Her site, [Soo’s Epilepsy Corner](https://soosepilepsycorner.blogspot.com/), brings real world experience to those living in the community. #### Her thoughts on Alternative Medicine and Epilepsy You could say I have evolved in my beliefs about alternative medicine and epilepsy. I used to be dead set against it. I thought it was too dangerous. Since it was unregulated, you didn’t know what effect the chemicals would have on your body and how they would interact with your other medications. I was skeptical that herbal medicine or medical marijuana (CBD) would be helpful. Not to mention acupuncture or other non-drug treatments. This attitude was reinforced by the medical community where I live. They tend to use CBD as a last resort, citing the lack of objective research. Now however, since Epidiolex has been approved for two types of epilepsy (Dravet Syndrome and Lennox-Gastaut Syndrome), doctors are slowly warming up to using it. #### [Read More](https://soosepilepsycorner.blogspot.com/2018/11/epilepsy-blog-relayalternative.html#more) --- **NEXT UP:** Be sure to check out the next post by Michael at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/start-here) **TWITTER CHAT:** Save the date for the #LivingWellChat on December 6 at 12 Noon ET. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/11/EBR-Nov18-150x150.png "EBR - Nov18 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/november-2018-participants)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our generous sponsors and partners! [Become a Sponsor ](https://livingwellwithepilepsy.com/2018-19-media-kit-_all) ![author avatar](https://secure.gravatar.com/avatar/d52fbb50f14201cb1c4aa52292adb331e89b5086a1db0c1711fed2af943b5367?s=300&d=mm&r=g) Soo Ihm Soo writes the blog Soo’s Epilepsy Corner and is a regular contributor to Living Well With Epilepsy. She lives in Orange County, California. She enjoys traveling, and has been to Europe three times. Her next journey will be just as interesting, with the RNS. [See Full Bio](https://livingwellwithepilepsy.com/author/sooihm) [ ](https://livingwellwithepilepsy.com/author/sooihm) **Categories:** Nov 18 EBR Posts, Treatments **Tags:** alternative medicine, CBD, epidiolex --- ### [Epilepsy Blog Relay: Practicing gratitude during difficult times](https://livingwellwithepilepsy.com/epilepsy-stories/practicing-gratitude.html) **Published:** November 23, 2022 **Author:** Jennifer Lounsbury **Excerpt:** Jenny takes a moment to practice gratitude despite her daughter's illness during a particularly difficult time. **Content:** ## [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/05/collee-e1559574193639-1004x1024.jpg "collee – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2019/05/collee-e1559574193639.jpg)On practicing gratitude As I write this, it is with great trepidation. Colleen hasn’t eaten in five days, and I am terribly reminded about [how easily she is set back when she is ill](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/jun-18-ebr-posts/colleen-on-cerebral-palsy-and-epilepsy.html). When I try to give her seizure medication, and she isn’t able to keep it down, I’m paralyzed with the fear that this will be the instance that triggers her seizures again. But, after five days, though she isn’t better, she is still seizure-free. There are moments of happiness in between the cuddles, and **I have to take a moment and be thankful** that despite her current health situation, she is happy, well and overall, thriving. [RELATED: Practicing Gratitude](https://hbr.org/2020/10/use-gratitude-to-counter-stress-and-uncertainty) ## Finding successes There is no doubt the pandemic was a massive challenge. I started working from home mid-March 2020, and my daughter went fully remote not long after. It felt like I was failing my daughter. I wasn’t able to do my work, get everything done, and still be able to get my daughter’s school work done–I felt terrible. But still, in between all that, teachers and therapists reached out and we were still able to get her some form of therapy. Best of all, she was still happy and healthy. ## Lonliness and COVID-19 During the pandemic, we essentially lived in a bubble. I felt utterly alone, but after everything that happened with Colleen when she was born, I wasn’t willing to put her at any sort of risk, in fear that any sickness would trigger her seizures, and she would never get back to the point she was. She was having such an excellent year in school before everything happened. And it was lonely too. Though Colleen is non-verbal, I could tell she missed her friends. And I missed having contact. ## Stronger Together It is through all this that I realize we are much stronger together. It’s extremely easy to feel overwhelmed not only with what is going on in the world, but also in dealing with your child’s health. It can be lonely and very isolating at times. But, if you look around and begin to reach out, you will soon find people who are willing to stand with you and be there for you, and help you with your struggles. People who know exactly what you’re going through, and ways to try to help. If you’re home, trying to care and protect your epilepsy warrior, reach out to friends. Join a support group. I’m in quite a few! Reach out to your child’s teacher. It is the most heart-warming thing when I pick up Colleen from school, and see a piece of artwork or a note from one of her friends. ## While we wait for a cure We all will look forward to the day when there is a cure for epilepsy. But for now, try to take a moment to be thankful every so often if you can. ![author avatar](https://secure.gravatar.com/avatar/2d7fe6c0eded69888607fe806fbe9bc4b4f814de382f989b182dab6125aed61c?s=300&d=mm&r=g) Jennifer Lounsbury CP/Epilepsy Advocate. Photographer and designer. “Courage, dear heart.” [See Full Bio](https://livingwellwithepilepsy.com/author/jennylouns) [ ](https://livingwellwithepilepsy.com/author/jennylouns) **Categories:** Cerebral Palsy and Epilepsy, Epilepsy Blog Relay, Epilepsy Stories, Nov 22 EBR Posts **Tags:** gratitude --- ### [Epilepsy Blog Relay: The Tuholskys manage epilepsy together as a family](https://livingwellwithepilepsy.com/epilepsy-stories/tuholskys-manage-epilepsy-together-as-a-family.html) **Published:** November 21, 2022 **Author:** Jessica K. Smith **Excerpt:** Meet the Tuholsky family and learn about their journey with their son Kyle’s epilepsy. They are remaining positive and advocating for better seizure control. **Content:** ## Meet the Tuholskys *An Inspiring Family’s Story of Managing Their Son’s Epilepsy* [**Scroll down for Important Safety Information**](#ISI) SK Life Science, Inc. is an innovative global pharmaceutical company focused on developing treatments for central nervous system disorders. Learn about the Tuholsky family’s journey with their son Kyle’s epilepsy and message to the epilepsy community on remaining positive and advocating for better seizure control. ***This post is part of the Epilepsy Blog Relay™. Follow along all month!*** *This blog post was submitted by [SK Life Science, Inc.](https://livingwellwithepilepsy.com/partners/sklifescience), the lead sponsor of the Living Well With Epilepsy blog.* ## Why is Kyle Moving His Eyes Like That? Joanie and Kent Tuholsky were getting ready for their daughter’s fifth birthday party when they noticed their one-year-old son Kyle was sitting in his highchair with his eyelids fluttering. Something was wrong. They immediately rushed to the emergency room. After several days in two different hospitals, doctors diagnosed Kyle with infantile spasms, a type of seizure that occurs in babies and often hinders brain development. The Tuholskys were heartbroken, and unsure of what life would look like moving forward. Eventually, the intensity of Kyle’s seizures began progressing, to the point where he was experiencing multiple severe episodes a day. On top of the constant attention Kyle needed, Joanie and Kent still had two young daughters to care for, and it was hard to maintain a sense of normalcy. > ***“The circumstances were anything but ordinary. It’s hard for people to understand what life is like. It’s not just the seizures. It’s that you can’t trust the absence of seizures because your timing is unpredictable. You can never relax.”*** *– Kent Tuholsky* ## Growing Up With Kyle Despite his epilepsy, Kyle in many ways was just like any ordinary kid. He was rambunctious, full of energy, and loved to run and climb. But “Where is Kyle?” became the Tuholskys’ mantra. They all needed to know the answer to that question at any given moment to keep him safe – and for their own sanity. Kyle’s parents and sisters have always been his best friends, primary caregivers, and biggest advocates. Being non-verbal, Kyle communicates with his body and eyes, so everyone in the family learned *his* language and how to interact with him. “Get down Kyle” were his little sister’s first words. Joanie and Kent vowed to always put their children first, never favor one over the other, and do their best to keep things positive. They made sure to balance life out with joy no matter what was happening with Kyle’s care. His sisters remember going to museums and parks during his hospital stays. They also remember how they enjoyed simply hanging out in his room and doing everything as a family, while learning how to make the best of any situation. ## Life After Treatment Finding the proper treatment for Kyle took the Tuholskys to California, Texas, and finally Atlanta where they met the neurologist who introduced them to the medication XCOPRI® (cenobamate tablets) CV when Kyle was 18. *XCOPRI® is indicated for adults with partial onset seizures.* Since starting treatment with XCOPRI®, the frequency of Kyle’s seizures has been significantly reduced. Kyle even began playing baseball for the Miracle League last year. > ***“There’s a level of peace in the house that we haven’t felt as a family in a really long time.”*** *– Jenna Tuholsky* The Tuholskys are extremely grateful for the direction that Kyle’s journey has taken and the path they’ve been on together. He’s taught them how to be resilient, how to remain positive despite their adversities, and how to never give up advocating for the ones you love. ## *Learn more about the Tuholsky family’s story and Kyle’s experience with XCOPRI®* [*here*](https://www.youtube.com/watch?v=bk58hWT4Fe8)*.* Everyone’s epilepsy is unique, and treatments work differently from person to person. Like Kyle and other XCOPRI® patients, SK life science encourages people with epilepsy and their caregivers to advocate for themselves and never settle for a treatment regimen that isn’t helping them reach their goals. If you have partial onset seizures, know you are not alone in your fight toward zero seizures. Speak with your healthcare professional to learn if [XCOPRI®](https://www.xcopri.com/) is the right treatment for you. **For more information about XCOPRI®, please visit** [**https://www.xcopri.com/**](https://www.xcopri.com/)**.** ## INDICATION AND IMPORTANT SAFETY INFORMATION FOR XCOPRI® (cenobamate tablets) CV **INDICATION:** XCOPRI is a prescription medicine used to treat partial-onset seizures in adults 18 years of age and older. It is not known if XCOPRI is safe and effective in children under 18 years of age. Please see additional patient information in the [Medication Guide](https://xcoprihcp.com/resources/pdf/SK_Med_Guide.pdf). This information does not take the place of talking with your healthcare provider about your condition or your treatment. **Please see full** [**Prescribing Information**](https://xcoprihcp.com/resources/pdf/SK_Prescribing_Information_Med_Guide_Combined.pdf) **and** [**Medication Guide**](https://www.xcopri.com/wp-content/uploads/2020/09/SK_Med_Guide.pdf)**.** **DO NOT TAKE XCOPRI IF YOU:** - Are allergic to cenobamate or any of the other ingredients in XCOPRI. - Have a genetic problem (called Familial Short QT syndrome) that affects the electrical system of the heart. **XCOPRI CAN CAUSE SERIOUS SIDE EFFECTS, INCLUDING:** **Allergic reactions: XCOPRI can cause serious skin rash or other serious allergic reactions which may affect organs and other parts of your body like the liver or blood cells.** You may or may not have a rash with these types of reactions. Call your healthcare provider right away and go to the nearest emergency room if you have any of the following: swelling of your face, eyes, lips, or tongue, trouble swallowing or breathing, a skin rash, hives, fever, swollen glands, or sore throat that does not go away or comes and goes, painful sores in the mouth or around your eyes, yellowing of your skin or eyes, unusual bruising or bleeding, severe fatigue or weakness, severe muscle pain, frequent infections, or infections that do not go away. **Take XCOPRI exactly as your healthcare provider tells you to take it. It is very important to increase your dose of XCOPRI slowly, as instructed by your healthcare provider.** **QT shortening: XCOPRI may cause problems with the electrical system of the heart (QT shortening).** Call your healthcare provider if you have symptoms of QT shortening including fast heartbeat (heart palpitations) that last a long time or fainting. **Suicidal behavior and ideation:** Antiepileptic drugs, including XCOPRI, may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call your health care provider right away if you have any of the following symptoms, especially if they are new, worse, or worry you: thoughts about suicide or dying; attempting to commit suicide; new or worse depression, anxiety, or irritability; feeling agitated or restless; panic attacks; trouble sleeping (insomnia); acting aggressive; being angry or violent; acting on dangerous impulses; an extreme increase in activity and talking (mania); or other unusual changes in behavior or mood. **Nervous system problems:** XCOPRI may cause problems that affect your nervous system. Symptoms of nervous system problems include: dizziness, trouble walking or with coordination, feeling sleepy and tired, trouble concentrating, remembering, and thinking clearly, and vision problems. **Do not drive, operate heavy machinery, or do other dangerous activities until you know how XCOPRI affects you.** **Do not drink alcohol or take other medicines that can make you sleepy or dizzy while taking XCOPRI without first talking to your healthcare provider.** **DISCONTINUATION:** **Do not stop taking XCOPRI without first talking to your healthcare provider.** Stopping XCOPRI suddenly can cause serious problems. Stopping seizure medicine suddenly in a patient who has epilepsy can cause seizures that will not stop (status epilepticus). **DRUG INTERACTIONS:** XCOPRI may affect the way other medicines work, and other medicines may affect how XCOPRI works. **Do not start or stop other medicines without talking to your healthcare provider.** Tell healthcare providers about all the medicines you take, including prescription and over-the-counter medicines, vitamins and herbal supplements. **PREGNANCY AND LACTATION:** XCOPRI may cause your birth control medicine to be less effective. **Talk to your health care provider about the best birth control method to use.** **Talk to your health care provider if you are pregnant or plan to become pregnant.** It is not known if XCOPRI will harm your unborn baby. Tell your healthcare provider right away if you become pregnant while taking XCOPRI. You and your healthcare provider will decide if you should take XCOPRI while you are pregnant. If you become pregnant while taking XCOPRI, talk to your healthcare provider about registering with the North American Antiepileptic Drug (NAAED) Pregnancy Registry. The purpose of this registry is to collect information about the safety of antiepileptic medicine during pregnancy. You can enroll in this registry by calling 1-888-233-2334 or go to www.aedpregnancyregistry.org. **Talk to your health care provider if you are breastfeeding or plan to breastfeed.** It is not known if XCOPRI passes into breastmilk. Talk to your healthcare provider about the best way to feed your baby while taking XCOPRI. **COMMON SIDE EFFECTS:** The most common side effects in patients taking XCOPRI include dizziness, sleepiness, headache, double vision, and feeling tired. These are not all the possible side effects of XCOPRI. Tell your healthcare provider if you have any side effect that bothers you or that does not go away. For more information, ask your healthcare provider or pharmacist. **Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088** or at . **DRUG ABUSE:** **XCOPRI is a federally controlled substance (CV) because it can be abused or lead to dependence.** Keep XCOPRI in a safe place to prevent misuse and abuse. Selling or giving away XCOPRI may harm others and is against the law. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. 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](https://linkedin.com/in/) **Categories:** Epilepsy Blog Relay, Epilepsy Stories, Nov 22 EBR Posts, Partner, SKLifeScience **Tags:** #adultepilepsy, #partialonset, #sklifescience, xcopri --- ### [Epilepsy Blog Relay: Ready to hit the stage with her epilepsy story](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-blog-relay-ready-to-hit-the-stage-with-her-epilepsy-story.html) **Published:** November 17, 2022 **Author:** Lainie Chait **Excerpt:** Lainie has taken going public with her epilepsy to the next level. She's written a book, taken to the stage and is launching a podcast! Check her out. **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/10/electro-girl_cover-resize.jpg "electro-girl_cover-resize – Living Well With Epilepsy")The next 12 months are going to be epic for me. I’ve waited 2-3 years post covid shenanigans to get a stage show I wrote, from a book about my epilepsy journey called ‘Electro Girl’, out on to the stage and into the world. ## Setting the Stage The show is designed to explain about epilepsy through my story and what happens to the brain and basically just advocate whilst entertaining and educating. I’m really looking forward to it, as there are still so many people unaware of what to do. I can only cover absence and tonic clonic seizures in my show as this is what I am familiar with and has been my experience. I’m afraid at this stage I can’t get to all 40 different types, but I do cover catamenial epilepsy in the show as well as I have definitely experienced those annoying sneaky hormonal ones just before menstruating for many years. Bloody glad they are over, however at least they were predictable! I nearly got away with 2 years seizure free recently but ended up tumbling one night about a month ago the day I left my job. (Ironic? nope, pretty much to be expected when it comes to my triggers). Oh, btw tumbler is now a word on the street that people with epilepsy are referring themselves as. I kinda like it, it’s cute and non-confronting. Not sure if that is just in Australia or everywhere but thought I’d share that. ## Going public ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/10/lainie_electro-girl-resize-small-300x200.jpg "lainie_electro-girl-resize-small – Living Well With Epilepsy")I tossed up for many years whether I wanted to just exist with having managed and treated epilepsy holistically, which means part medicine part lifestyle and get on with my life. Or whether I use the epilepsy in a creative field and go out and kick some ass. I decided, because epilepsy had run the show for a while there, that instead of the epilepsy running the show, I’ll run the show and use the epilepsy instead as a platform. I plan to refine the show over the next 6 months, look for investment, sponsorship and/or funding and go out in the world with a loud message to assist people to: 1. understand epilepsy better and 2. take steps to ensure they don’t become a statistic. ## The Podcast I am also doing a podcast now called “Love your Diagnosis” and it is designed to speak with people diagnosed with a condition/illness who have got back in the driver’s seat of their health and found many ways to combat and manage their condition which doesn’t just involve just listening to “doctor’s orders”. All episodes can be accessed to listen through most of the podcast channels (spotify, apple podcast, goodle pod, stitcher etc) or you can click here and access my website to listen and get updates of when a show might be coming near you. https://electrogirl.com.au/love-your-diagnosis-podcast/ I am doing a season called “Love your Epilepsy Diagnosis” and would love to hear from you if you feel like being interviewed to tell about the journey of your diagnosis and how you rose above your diagnosis and have used it to your advantage. The podcast is not designed to nurture the victim but rather the warrior. I would love to hear from you and connect as epileptics that wire together, fire together Terms and Agreement I agree ![author avatar](https://secure.gravatar.com/avatar/6741f205abb236e76a0cbb8b5f2273ea5186a2e0f7714f7742a457fe0a89a5d0?s=300&d=mm&r=g) Lainie Chait [See Full Bio](https://livingwellwithepilepsy.com/author/lainie) [ ](https://livingwellwithepilepsy.com/author/lainie) **Categories:** Epilepsy Blog Relay, Epilepsy Stories, Nov 22 EBR Posts --- ### [Epilepsy Blog Relay: Brain Surgery for Epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/brain-surgery-for-epilepsy.html) **Published:** November 7, 2022 **Author:** Nancy Jane Smith **Excerpt:** Nancy Jane and her husband have shared the story of preparing for his brain surgery for epilepsy. They are ready for a better option. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/05/316016_10150322701587131_340473371_n-e1575061645316-292x300.jpg "316016_10150322701587131_340473371_n – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=20946)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** #### Nancy Jane’s Story Since the 3rd grade, my husband has dealt with seizures. Although the doctors insisted he would grow out of them, no matter what he has tried, [epilepsy](https://livingwellwithepilepsy.com/about-epilepsy) and seizures are still a daily part of his life. He has tried everything from extreme self-care, medical cannabis, traditional meds, and pretending they don’t exist. Nothing has worked. Last year, another medication failed either because the med didn’t work or the side effects were too significant. So, at my husband’s quarterly neurologist appointment our neurologist said, “Maybe we should think about brain surgery. You are definitely [medicine resistant](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/epilepsy-blog-relay-david-on-raising-a-child-with-refractory-epilepsy.html), and we can’t get control of your seizures.” At that time, he was taking five meds a day (not including medical cannabis). I sat there, stunned brain surgery?!?! That was where we had landed brain surgery!? I had not expected the doctor to say that! #### When brain surgery is suggested Unfortunately, seizures have become a regular part of our lives. My husband doesn’t hold a job because of his seizures. He suffers from depression, overwhelming exhaustion, anxiety, brain fog, and aphasia. Not to mention, the brain effects we don’t even know about. So when the doctor said brain surgery was our next move after the initial shock, we both said yes how soon can it happen. ***“when the doctor said brain surgery was our next move after the initial shock, we both said yes how soon can it happen.”*** We have shared his brain surgery with friends, and they have all commented on how cavalier we seem about the whole thing. It is easy to be cavalier when your [quality of life](https://www.instagram.com/p/ByyWGCQgNJM/) is near zero. But it isn’t all doom and gloom. My husband is one of the most sensitive, caring, kind, generous people I have ever met. Because of his struggle with epilepsy, he is more empathetic and understanding than most. His ability to be patient, listen, and attune to other’s emotions is incredible, and I believe one of the gifts of his epilepsy. His creativity is off the charts; unfortunately, due to his meds, shaky hands, and a challenge with concentrating makes those creative endeavors more challenging. So the fact that we have hope that he may one day be seizure free and best-case seizure free without meds is a medical miracle. #### Preparation for surgery There are several hoops to jump through before the surgery is for sure. They only have 16 candidates a year. Over the next few months, he will undergo neuropsychological testing to map how his brain thinks. Then he will have two weeks in the Epilepsy Monitoring unit where they will drill burr holes into his head to attach electrodes so they can map where his seizures are located in his brain. All to determine whether his seizure activity is located in an area where they can perform an ablation on the brain tissue. ***Note of disclaimer:** that is my non-medical license understanding of what is happening.* To raise awareness of this process and hopefully help others in the meantime, I will be writing more about this topic as we move forward. --- ![author avatar](https://secure.gravatar.com/avatar/f05efee5207b95f9a44ac96fbefeed2d6d256b021176a55768a6eb1c0cfa60d6?s=300&d=mm&r=g) Nancy Jane Smith I am fortunate to be the wife of an amazing man (celebrating 8 years in June) who has dealt with epilepsy since the 3rd grade. Sharing our story and spreading the word about epilepsy helps me feel less alone and out of control. Honesty, gratitude and living day by day is our secret. [See Full Bio](https://livingwellwithepilepsy.com/author/nancyjane855) [ ](https://livingwellwithepilepsy.com/author/nancyjane855) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/NancyJaneSmith/) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://twitter.com/NancyJane) **Categories:** Epilepsy Blog Relay, Epilepsy Stories, Nov 22 EBR Posts, Treatments --- ### [Epilepsy Blog Relay: Epilepsy as a Result of Cortical Dysplasia](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-blog-relay-epilepsy-as-a-result-of-cortical-dysplasia.html) **Published:** November 4, 2022 **Author:** Guest Contributor **Excerpt:** Roman was diagnosed with epilepsy as a result of cortical dysplasia at the age of 3.5 months old. Learn more about cortical dysplasia here. **Content:** ## ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/06/d0b29f7b-bc72-40d2-bf35-21fbb52e1bcc-557x1024.jpeg "d0b29f7b-bc72-40d2-bf35-21fbb52e1bcc – Living Well With Epilepsy")Seizure in Mom’s Arms I remember how excited I was when I found out I was pregnant with Roman. I remember every visit to my ultrasounds and saved every photo. What we didn’t see from those photos was the Cortical Dysplasia that would eventually make itself known when Roman was 3 1/2 months old and experienced his first seizure at 2am in my arms. I knew right away and was scared. ## Cortical Dysplasia After getting admitted to the ER and several scans and tests later, he was diagnosed with Epilepsy as a result of Cortical Dysplasia; the most common cause of pediatric [refractory epilepsy](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/epilepsy-blog-relay-david-on-raising-a-child-with-refractory-epilepsy.html "Epilepsy Blog Relay™: David on raising a child with refractory epilepsy"). 9 years later, Roman has undergone brain surgery, 18+ medication trials, has been diagnosed with ADHD, Autism, Intellectually Disabled and, of course intractable Epilepsy, he is still smiling. He is a warrior in every sense of the word. ## An inspiration Some days are better than others for him, but not one day goes by that he doesn’t wake up smiling and singing. He loves music. Roman doesn’t let his diagnosis stop him from anything. He just keeps plugging along. It’s truly inspiring. ## A long road ahead With that being said, we still have a journey ahead of us. The disease has a dark side that includes behaviors and cognitive deficiencies which require special attention and therapy. Roman only has seizures when he is sleeping making him 50% more likely to die of [SUDEP (sudden unexpected death from epilepsy)](https://livingwellwithepilepsy.com/2022/personal-epilepsy-stories/my-beef-with-sudep-research.html "Epilepsy Blog Relay: My beef with SUDEP Research"). He, at times, gets up in his sleep, goes into a seizure and falls. This has led to some injuries and I feel totally helpless. ## Epilepsy Community As I navigate his future, much is unknown as to what his future will look like. Thanks to [Lurie’s Children’s Hospital](https://www.luriechildrens.org/), friends in similar situations and Roman’s teachers, we are figuring it out as a team. Roman has so many beautiful people in his corner. He makes everyone around him smile. ## Roman’s Story I write his story today to provide hope to caregivers and parents dealing with the daily struggles of epilepsy and seeing its effects. It’s hard and I wish I could snap my fingers and make my child well. However, that’s not my reality. So when I see my little warrior fighting, I fight alongside him. One day we will find a cure. One day, my son will get to live seizure free. I hope that for all who struggle with this disease. Roman’s name is fitting. In Hebrew, it means Strong. He is a warrior and he will win this battle! ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, Epilepsy Stories **Tags:** cortical dysplasia, SUDEP --- ### [Epilepsy Blog Relay: Meet Epileptic Movie Producer Carolyn Parker Boyd](https://livingwellwithepilepsy.com/epilepsy-blog-relay/epileptic-movie-producer.html) **Published:** November 3, 2022 **Author:** Caroline Parker Boyd **Excerpt:** Meet Carolyn Parker Boyd: She's an epileptic movie producer and she has a new project titled, "Where's Gramps?" **Content:** ## ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/06/Profile2022-900k-211x300.png "Profile2022 900k – Living Well With Epilepsy")Meet Carolyn Parker Boyd She’s an epileptic movie producer and she has a new project titled, [“Where’s Gramps?”](https://seedandspark.com/fund/wheres-gramps#updates) This film is the story of a young boy who doesn’t understand the concept of death. ## Where’s Gramps? Few films, if any, have explored the effects of losing a family member and what that does to children psychologically. The team hopes to bring awareness to the grief one feels after a beloved person’s passing. This project will be shot in a [Wes Anderson-style](https://www.imdb.com/name/nm0027572/), with a little bit of magic similar to the film *“Hugo”* thrown in. After losing her father to cancer at the age of 10, and being [diagnosed with epilepsy](https://livingwellwithepilepsy.com/start-here) a few months later, Boyd knows what it’s like to experience the loss of a loved one. “It’s a hard concept to grasp as a child, and everyone on our team has been through those difficult times at one point or another. Our director, Barri Chase, has worked with child actors on the set of her feature film, The Watchman’s Canoe, which is currently on Amazon Prime. She has extensive knowledge of bringing the best performances out of children in a caring way,” says Boyd. The team found a lovely town, Seaside, Oregon, that makes visitors feel like they are stepping into a Wes Anderson film. The Where’s Gramps? team has a crowdfunding campaign on [Seed & Spark](https://seedandspark.com/fund/wheres-gramps#updates/37488) to help them raise the funds for this project. Every dollar will go towards this project, that will be a great family-friendly film to teach children across the country about the loss of a loved one. Their crowdfunding campaign has reached their goal but they are looking for funds to support casting and equipment. If you would like to support the project visit Boyd’s production company website at: ![author avatar](https://secure.gravatar.com/avatar/d7f99d25a981158999ca8c3c85f24786512682e8cb5842e7ba4762bd0884be21?s=300&d=mm&r=g) Caroline Parker Boyd Caroline Parker Boyd is the Founder and CEO of [Parker Pictures](https://parkerpictures.com/about-the-founder), and the President and CEO of Sapphire Compass Group. She is an epileptic producer and Diversity and Inclusion consultant. While some see her disability as a crutch, she a way to tell stories from a different perspective. [See Full Bio](https://livingwellwithepilepsy.com/author/carolinepb) [ ](https://livingwellwithepilepsy.com/author/carolinepb) **Categories:** Epilepsy Blog Relay, Nov 22 EBR Posts --- ### [Epilepsy Blog Relay: One week as an epilepsy camp counselor changed my life](https://livingwellwithepilepsy.com/epilepsy-blog-relay/one-week-as-an-epilepsy-camp-counselor-changed-my-life.html) **Published:** November 1, 2022 **Author:** Guest Contributor **Excerpt:** The opportunity to be a camp counselor for a week arose and I jumped on it. I love kids, I love camping, and I needed to find a way to give back to my community. I thought that this could just be it. I had no idea that this was going to change my life. **Content:** ## ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/08/2455a3cb-cee4-4191-9cb0-ed4b0a1fe266-1024x635.jpeg "2455a3cb-cee4-4191-9cb0-ed4b0a1fe266 – Living Well With Epilepsy") ## Epilepsy camp I took a week off of my job as a behavior analyst, working with kids with autism (many of whom also have seizures), to go volunteer as an epilepsy camp counselor at [Camp Coelho](https://www.epilepsynorcal.org/our-programs/campcoelho/) through the Epilepsy Foundation of Northern California. It changed my life. ## My own epilepsy I was diagnosed with epilepsy myself at the age of 14 and my seizures have been well under control for many years. But recently my anxiety and a panic disorder had sprung up, debilitating me in some areas of my life. One area was in presenting over zoom and reading reports aloud to groups of people – I had recent panic attacks at [IEP’s](https://livingwellwithepilepsy.com/2018/parenting/epilepsy-blog-relay-tips-on-creating-504-and-iep-plans-to-safeguard-your-child-with-epilepsy.html "Epilepsy Blog Relay: Tips on creating 504 and IEP plans to safeguard your child with epilepsy") that shattered me in ways that are indescribable. Therapy was helping, as was a healthy dose of Prozac, but I still found myself freezing in moments where I used to have total confidence. I had lost my sense of self (after having covid twice though I’m fully vaccinated, suffering a concussion from a roller-skate fall, and going through a significant medication change that resulted in some intense side effects) and didn’t know what that “self” was supposed to be. ## Finding a way back The opportunity to be an epilepsy camp counselor for a week arose and I jumped on it. I love kids, I love camping, and I needed to find a way to give back to my community. I thought that this could just be it. I had no idea that this was going to change my life. ## Day one My group of 15–17-year-old girls asked me to read them a bedtime story. I froze in fear. This was the moment I would break (my fear of public speaking came flashing before my eyes, and in front of a group of teenage girls no less, teenage girls are notoriously terrifying). But I did it for them and I trembled my way through it, and they loved it so much, they continued to request bedtime stories from me night after night. My girls and I bonded quickly after that. ## Day three After staying alert through the nights listening to see if any of the girls were having seizures in their sleep and sleeping on the top bunk of a camp bed, I had my first absence seizure in over 2 years. Then I had another one the next day. But I was okay because I was with people who were like me, (a group of neurodivergent “purple people” as one of my campers called us) and I had no panic attacks. I haven’t had a single attack since I returned from that trip. I felt like I could be myself around these humans, and I have been empowered to be myself, whatever that self is, wherever that self is. ## Finding my inspiration I still keep in touch with one of the young women that was one of my campers. She is a strong and independent girl who truly changed my life. At the end of the camp there was a “candlelight ceremony” and this young woman faced her fear and stood up and spoke in front of the whole camp and made a beautiful speech. To say I teared up was an understatement (I bawled my eyes out). We live far apart but through the magic of FaceTime we can chat and text and keep up with each other. She inspired me to be brave and do things even though they terrify you, because it’s so worth it. This is for you Ellie. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, Nov 22 EBR Posts **Tags:** epilepsy camp --- ### [Epilepsy Blog Relay: November is Epilepsy Awareness Month](https://livingwellwithepilepsy.com/epilepsy-news-and-research/epilepsy-awareness-month-2.html) **Published:** October 28, 2022 **Author:** Jessica K. Smith **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/10/IMG_0537-225x300.png "IMG_0537 – Living Well With Epilepsy")If you are [newly diagnosed](https://livingwellwithepilepsy.com/start-here) or just now looking into [connecting with others](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) living with epilepsy, we may not have met. I’m Jessica K. Smith, founder and CEO of Living Well With Epilepsy and I was diagnosed with epilepsy after having several tonic clonic (grand mal) seizures the summer between seventh and eighth grade (about 12 years old). I started Living Well With Epilepsy back in 2009 and have been working to make a space for people with epilepsy to be heard ever since. I wanted to share a few things with you while I have a second. ## November is Epilepsy Awareness Month In case you are new to this community, let me say welcome! I hope you find lots of relevant and informative stories this month that make you feel seen and heard. This month as you post stories you are encouraged to use the hashtag #livingwellwithepilepsy. ## ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/10/Nov22-Epilepsy-Blog-Relay_square2-150x150.png "Nov22 Epilepsy Blog Relay_square(2) – Living Well With Epilepsy")Epilepsy Blog Relay All Month Long At Living Well With Epilepsy, we take this opportunity to showcase stories of people living with and impacting those in the community from all over the world. Each day throughout the month you will find something new. I hope you will stop by and check it out! And a special thank you to our generous sponsor who makes the Epilepsy Blog Relay possible, [SK Life Science, Inc.](http://sklifescienceinc.com/) ### **SUBMIT YOUR STORY** If you have not submitted a story here’s a link: [Submit Your Story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ## ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/10/eaddl-logo.jpg "eaddl logo – Living Well With Epilepsy")Kicking off the month at Epilepsy Awareness Day at DisneyLand Thanks to the gracious hosts of [Epilepsy Awareness Day at DisneyLand](https://epilepsyawarenessday.org/), Brad and Candy Levy, Living Well With Epilepsy will have a booth on the expo floor featuring buttons, a raffle and a teeny selfie station. If you plan to attend, we encourage you to stop by our booth! See you there. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Blog Relay, News and Research **Tags:** Epilepsy Awareness, epilepsy awareness day at disneyland, Epilepsy Awareness Month, Epilepsy Blog Relay --- ### [Emily's Perspective: A New School Year with Epilepsy](https://livingwellwithepilepsy.com/life-with-epilepsy/school/a-new-school-year-with-epilepsy.html) **Published:** August 26, 2022 **Author:** Emily Lawrence (Nee Donoghue) **Excerpt:** When a child with Epilepsy begins school, he or she may face many obstacles. In this article, I suggest some tips to help kids find success. **Content:** [![photo(5)](http://livingwellwithepilepsy.com/wp-content/uploads/2015/06/photo5-300x224.jpg "photo(5) – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2015/epilepsy-news/fathers-day-its-time-to-say-thanks.html/attachment/photo5)Epilepsy affects the whole family in so many different ways. The effects of [Epilepsy](http://livingwellwithepilepsy.com/living-with-epilepsy) & seizures on the life of the family and child are extremely variable. For example, children who experience mild, infrequent seizures that are easily controlled by [medication](http://livingwellwithepilepsy.com/finding-a-treatment) will likely lead lives with few restrictions on their social and physical functioning. At the same time, children and their families may be frightened by the diagnosis of Epilepsy and continue to feel worried and uncertain about the possibility of another seizure. Even when my seizures were mild, my family and myself lived with the ‘What if’s’ of Epilepsy. What if I fall behind in [school](http://livingwellwithepilepsy.com/2012/epilepsy-news/backtoschoolwithepilepsy2012.html)? What if I lose all my confidence and never want to go anywhere alone? What if I can never be independent? All these questions are common for parents and patients of Epilepsy, and in this month’s column I’d like to advise parents on what may help their child in this new school year. #### Preparing for School: Teachers & Students Dealing with the fear and embarrassment of having seizures in front of friends and teachers can be difficult for a child to handle. In 2006, when my seizures began, I frequently got laughed at; it was the most humiliating thing I have ever experienced. Nobody knew what to do or how to react, so people laughed and stared at me as I stared blankly. From the experience of seeing how well my parents have coped with my Epilepsy my first tip is to prepare your child and their school for how to handle seizures when they strike. To do this, make sure that your child [understands](http://kidshealth.org/parent/medical/brain/epilepsy.html) seizures and Epilepsy. Next, talk to your child’s school teacher(s) and the head of the school (Principal) to inform them of your child’s neurological condition. It is also a good idea to give them a list of what could be a possible trigger for the seizures. Ask the teacher if she/he will explain what epilepsy is to the classmates. This way they will understand what is happening when a seizure occurs and it’ll be less daunting for everyone. Your child’s teachers also need to understand how epilepsy and seizure medications can affect your child’s ability to learn and perform in school. When I was first put onto my anti epileptic drug (Ethosuximide) I was tired a lot, I was irritable, and I felt sick most days. Having my teachers aware of what I was going through was one less thing for my Mum to worry about because she knew I was being taken care of at school. Children with Epilepsy are just as intelligent and capable as other children although it’s not uncommon for children with epilepsy to struggle in school. It is important to make sure everyone is aware of what your child is going through because children who have epilepsy are likely to miss a lot of school because of doctor’s appointments, tests, and sick days. These missed days may also affect performance but it shouldn’t be put down to ‘laziness’. If this is happening, you might want to consider getting a tutor so your child can stay on top of schoolwork, even if it’s just once every few weeks to recap. #### Sharing Experiences My school life living with Epilepsy (2006-2011) was one big roller coaster ride, but along the way I learned a lot that I can pass onto others to help them along the way. As a child you can feel isolated and unhappy when you’re struggling with seizures, so one thing I always enjoyed doing was educating my classmates (and sometimes my teachers!) about my Epilepsy. Epilepsy can take a toll on children, but it doesn’t have to significantly affect your child’s experience at school. If you and your child can help with educating classmates, parents and teachers, it will go a long way towards minimizing the child’s fear of having seizures at school. Ask yourself, is your school aware of epilepsy? If not, here are a few pointers you could pass on to them. - Epilepsy is a common neurological condition. - There are different types of epilepsy and many different types of seizures, they do not all look the same - 80% of children with epilepsy attend mainstream schools and colleges, it is possible to live a normal life Does your child’s school offer a show and tell day? When I was in school, once a week we took it in turns to stand at the front of the class to tell a story or show our latest favourite toy. This is the perfect opportunity to let your teachers or your child raise awareness of the challenges of living with epilepsy. By doing this you can promote open and positive attitudes and behaviour towards epilepsy & reduce stigma and misunderstanding. #### Quick Tips If your child struggles to concentrate in class, whether it’s because of medications, treatment or the after affect of a seizure, try asking for some extra time in class to make notes on the key points that they have learned in that lesson; even small things will help to trigger your child’s memory when looking back at the notes. This can be made fun! Try getting a pretty notebook, some colours, and stickers. It is also a good idea to make learning outside of [school ](http://livingwellwithepilepsy.com/2011/epilepsy-news/ready-to-go-back-to-school-with.html)‘fun’. Try sitting down for 30 minutes at home to go through what your child learned that day, try making some flash cards for them to look back at when they feel confused or forgetful. I loved flashcards in school; I hung them around my room so I could read them all the time. What struggles have you or your child faced when a new school year begins? How did you overcome them? Let me know in the comments! ![author avatar](https://secure.gravatar.com/avatar/5523d28ae8bbaedc9d082d51d29393ca490379cd31464b99ab3c7d50a49362ac?s=300&d=mm&r=g) Emily Lawrence (Nee Donoghue) 25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England. Emily's Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10. Based in UK. [See Full Bio](https://livingwellwithepilepsy.com/author/emilyd) [ ](https://livingwellwithepilepsy.com/author/emilyd) **Categories:** School **Tags:** Emily's Perspective, epilepsy, school, seizures --- ### [Could epilepsy medications be next to be denied?](https://livingwellwithepilepsy.com/advocacy-awareness/healthcare/could-epilepsy-medications-be-next-to-be-denied.html) **Published:** July 19, 2022 **Author:** Jessica K. Smith **Excerpt:** After a woman with lupus denied medication due to Roe ruling, neurologists express concern for people with epilepsy to access epilepsy medications. **Content:** ![Becky Schwarz](https://livingwellwithepilepsy.com/wp-content/uploads/2022/07/roe.jpg "roe – Living Well With Epilepsy")*Becky Schwarz*[Becky Schwarz,](https://twitter.com/BeccaLizz) a person living with lupus, posted a tweet on July 4th about her condition, and the challenges she now faces as her “access to healthcare has changed” in light of the [Supreme Court](https://www.newsweek.com/topic/supreme-court) of the United States (SCOTUS) ruling on Roe v Wade. Her medication, methotrexate, was denied because it is considered an abortifacient. Methotrexate is used to treat certain types of cancer, or manage severe psoriasis or rheumatoid arthritis that has not responded to other treatments. Her post, which has been liked more than 41,000 times, said: “I’ve never had an abortion but my [access to healthcare](https://www.newsweek.com/hospital-bans-then-allows-plan-b-amid-unclear-abortion-laws-missouri-1720791) has changed because Roe was overturned.” Thank you to Becky, who has generously allowed me to include her photo and tweet in this article. ## Epilepsy medications Many of us are aware that the history of stigma in the epilepsy community has deep and nasty roots. In fact, we were the original test subjects in the [early stages of the eugenics movement](https://www.britannica.com/science/eugenics-genetics). But let’s not set off panic alarms just yet. For now, let’s just focus on epilepsy medications. We have known for a while that some anticonvulsant medications or epilepsy medications are “contraindicated” during pregnancy. That means they could potentially harm the fetus. Many epilepsy medications are considered to be “teratogenic.” A teratogenic drug is an agent that can disturb the development of the embryo or fetus. Teratogens halt the pregnancy or produce a congenital malformation (a birth defect). We have known for some time that there are anticonvulsants that are known to or suspected to cause neural tube defects. In fact, I have personal experience with this myself. As such, at least one neurologist has expressed concern via a paper in JAMA Neurology that it will become increasingly difficult for people with epilepsy to get our medications. New research out of UCSF finds that the decision by the Supreme Court to overturn Roe v. Wade could cut off the ability of women with neurological conditions, like epilepsy, to receive access to treatments. [In an interview on KCBS Radio news anchor Melissa Culross spoke to Dr. Sara LaHue, Assistant Professor of Neurology at UCSF on this topic specifically.](https://www.audacy.com/podcasts/kcbs-on-demand-20757/women-with-neurological-conditions-access-to-treatment-could-be-cut-off-after-roe-v-wade-decision-1508113766) You can read her paper in [JAMA Neurology here](https://jamanetwork.com/journals/jamaneurology/fullarticle/2794176). ## Pregnancy with epilepsy Further to that point, it has taken decades to remove laws from the books here in the United States that [prevented women with epilepsy from marrying and having children](https://blog.oup.com/2015/03/purple-day-history-epilepsy-timeline/). Now I have to wonder if the US is heading back in that direction. It would certainly align with the rhetoric we are hearing in politics. For more articles on pregnancy and epilepsy: [VISIT PREGNANCY AND EPILEPSY ](https://livingwellwithepilepsy.com/category/parenting/pregnancy) ## In case you are happy Roe was overturned I wanted to provide something for those who may be happy that Roe v Wade was overturned. Here is some information on the [Turnaway Study, *Ten Years, A Thousand Women, and the Consequences of Having – or Being Denied – an Abortion*](https://www.ansirh.org/research/ongoing/turnaway-study). This study, was done at the University of California, and led by Diana Greene Foster PhD. I have linked through to the study website. On the site Dr. Foster and team note, the main finding of this 10 year study of a thousand women is that receiving an abortion does not harm the health and wellbeing of women, but in fact, being denied an abortion results in worse financial, health and family outcomes. ## What to do If this article leaves you feeling like you need to do something, there are some steps that we can take. I’ve listed a few organizations working to make change: - Emily’s List: - Human Rights Campaign - Planned Parenthood - Americans with Disabilities National Office - Committee to Protect Healthcare ## Your feedback If you wondered why I was quiet on this issue, I apologize. I wanted to put out a thoughtful response. And if this article frustrates or angers you, I apologize. As always, I need to be true to this community and my values. I look forward to, and welcome, your comments and feedback. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Healthcare **Tags:** epilepsy and pregnancy, epilepsy medications, pregnancy and epilepsy, RoevWade --- ### [Epilepsy Blog Relay: Avery's Fight With Nonketotic Hyperglycinemia (NKH)](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-blog-relay-averys-fight-with-nonketotic-hyperglycinemia-nkh.html) **Published:** June 18, 2022 **Author:** Guest Contributor **Excerpt:** Avery was born with Nonketotic Hyperglycinemia (NKH), a disorder characterized by high levels of a molecule called glycine in the body (hyperglycinemia). **Content:** ## ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/06/img_20220510_104229642-768x1024.jpg "img_20220510_104229642 – Living Well With Epilepsy")Meet Avery Avery has [Glycine encephalopathy (GCE)](https://rarediseases.org/gard-rare-disease/glycine-encephalopathy/) or [nonketotic hyperglycinemia](https://rarediseases.org/rare-diseases/nonketotic-hyperglycinemia/) is an inborn error of glycine metabolism, inherited in an autosomal recessive manner due to a defect in her [GLDC gene](https://medlineplus.gov/genetics/gene/gldc/) in the glycine cleavage system. Her body produces too much naturally. This defect leads to glycine accumulation in body tissues, including the brain, and causes various neurological symptoms such as encephalopathy, hypotonia, apnea, intractable seizures and possible death. She has a biallelic mutation in the GLDC gene. It’s just in her DNA. ## What is Nonketotic Hyperglycinemia (NKH)? [Nonketotic Hyperglycinemia (NKH)](http://www.connectingthegrowingbrain.com/prognosis-of-patients-with-nonketotic-hyperglycinemia-is-it-feasible/) is a disorder characterized by abnormally high levels of a molecule called glycine in the body (hyperglycinemia). The excess glycine builds up in tissues and organs, particularly the brain. Affected individuals have serious neurological problems. Genetics checks glycine a lot to try and find that balance. She also has agenesis of the corpus callosum (aka missing part in the middle of her brain). This is one of several disorders of the corpus callosum, the structure that connects the two hemispheres (left and right) of the brain. ## Avery’s Seizures Avery has intractable epilepsy is a brain disorder that causes people to have recurring seizures. The seizures happen when clusters of nerve cells, or neurons, in the brain send out the wrong signals. People may have strange sensations and emotions or behave strangely. She may have violent muscle spasms or lose consciousness. She’s has seizures ever since she was born. Normally 20 a day. ## Using the Ketogenic Diet Currently she’s on the [Ketogenic diet](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/meet-the-boy-behind-the-ketogenic-diet-charity-matthews-friends.html "Meet the boy behind the ketogenic diet charity, Matthew’s Friends") through a Gtube in her stomach. Currently it’s a concoction of KetoVie 3:1, water, beneprotein & lite salt. Its a high-fat, low-carbohydrate, adequate protein diet that can be used to treat difficult-to-control seizures. The human body uses mostly carbohydrates for energy. When carbohydrates are not available for energy, the body can use fat for energy instead. The breakdown of fat for energy produces a waste product called “ketones.” The state of ketosis is often associated with improved seizure control. The ketogenic diet resets how your body uses food. Usually, carbohydrates in your diet (like sugars and starches) provide most of the energy. The keto diet lowers the amount of carbs you eat and teaches your body to burn fat for energy instead. Since the keto diet she now has 0 seizures!!! ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories **Tags:** EpilepsyAwareness, EpilepsyWarrior, GLDC Gene, GlycineEncephalopathy, NKH, rare disease --- ### [Pro Golfer Kenzie O’Connell On Taking Control of Her Epilepsy and Fighting for Zero Seizures](https://livingwellwithepilepsy.com/epilepsy-blog-relay/pro-golfer-kenzie-oconnell-on-taking-control-of-her-epilepsy-and-fighting-for-zero-seizures.html) **Published:** June 17, 2022 **Author:** Jessica K. Smith **Excerpt:** STEPS Toward Zero champion, Kenzie O’Connell, and epilepsy advocate, Landis Wiedner, share about their experiences living with and managing epilepsy **Content:** **![Kenzie O'Connell](https://livingwellwithepilepsy.com/wp-content/uploads/2022/06/Honest-Conversation-Photo_June-LWWE-Post-scaled-e1655407150924-1024x875.jpg "Honest Conversation Photo_June LWWE Post – Living Well With Epilepsy")** STEPS Toward Zero champion, Kenzie O’Connell, and epilepsy advocate, Landis Wiedner, share about their experiences living with and managing epilepsy. *This blog post was submitted by SK life Science, Inc. the lead sponsor of the Living Well With Epilepsy 2022 Epilepsy Blog Relay. [SK Life Science, Inc.](https://www.sklifescienceinc.com/) is an innovative global pharmaceutical company focused on developing treatments for central nervous system disorders.* ## Steps Toward Zero As part of the [STEPS Toward Zero movement](https://www.stepstowardzero.com/), Chicago-based writer, Living Well With Epilepsy blog editor and epilepsy advocate [Landis Wiedner](https://livingwellwithepilepsy.com/author/landiswiedner) speaks with professional golfer, [Kenzie O’Connell](https://www.instagram.com/kenzie.oconnell/?hl=en) on her perspective on living with epilepsy and what working toward zero seizures means to them. **LANDIS WIEDNER: As an epilepsy journalist, I’m very excited to be speaking with an amazing woman and epilepsy advocate, Kenzie O’Connell. I consider myself an epilepsy newbie because I’ve only had it for five years, so I’m still learning, and although I’m still learning, my goal is to bring conversations about life with epilepsy into our day-to-day conversations.** **When you talk about “zero seizures,” it’s a little complicated because at least one out of three people with epilepsy will continue to have seizures despite taking medication. I am one of those people. For me, “zero seizures” looks different than for someone who goes an hour, or a day, or a month, or years without seizures. As you all may know, epilepsy is very unique to the individual, which means the steps toward zero change from person to person.** **How has your understanding of “zero seizures” changed from when you were first diagnosed to where you are now in your epilepsy journey?** **KENZIE O’CONNELL**: I was diagnosed with epilepsy when I was 21 years old, and I knew nothing about epilepsy. At that time, I was having six to seven seizures a day and I never thought reaching zero seizures would be possible. I was having trouble processing and accepting what was happening to me at the time. Eventually, I learned to accept that I have epilepsy, but that it’s not my entire identity. For me, staying positive and continuing to work with my doctor was what helped me the most in getting to this point. Today, I’m four months seizure-free – the longest I’ve gone since my diagnosis without having a seizure. Zero seizures look different for everyone, but you should always feel empowered to continue working toward your goals. **LW: When you talk about acceptance, for me it’s a very fluid concept when it comes to epilepsy. I remember the day I realized that my epilepsy wasn’t going anywhere, and that I needed to move forward in this different lifestyle rather than trying to get back to my old life. That was a huge moment for me – but that doesn’t mean that every day it’s easy for me to accept it.** **KO:** Totally – and it’s important to remember that even in the good moments, when you may not be having seizures, you still need to stay on top of your medication and keep fighting for zero seizures. **LW: How has epilepsy affected your golf career and are there any strategies you’ve learned to be able to play at the professional level while having seizures?** **KO:** When I was first diagnosed, my golf career was kind of put on the back burner, but eventually golf became my escape. I recommend everyone try to find an escape, somewhere you can go or something you can do that allows you to get out of your head and prevents your epilepsy from consuming you. I was cleared by my neurologist to continue playing golf, and it was extremely reassuring realizing I can still do the things I love. **LW: When you were first learning about your diagnosis, what do you wish you had known? What questions do you wish you had asked your doctor?** **KO:** I was 21, and it was very confusing. I didn’t know anything about epilepsy, so I thought I was just passing out all the time. Honestly, I did it all wrong. I was stubborn and I didn’t want to admit that I had epilepsy. I also didn’t want to accept help from anybody or listen to my neurologist. I wish I had known to do the exact opposite – listen to your neurologist and ask questions. Push on those questions and don’t be afraid to ask for a second opinion! Once I became more invested in the fact that I do have epilepsy, I started doing research on my own and raising questions to my doctor, and it helped me be more in control of my condition. **LW: I totally agree. I actually didn’t even know that I had epilepsy for a while. At first, my doctor didn’t know if my seizures were an effect of my brain surgery or if it was epilepsy but began treating me as if it was epilepsy. Down the line I was Googling epilepsy and realized, wait a minute – I have epilepsy. Here I am thinking, why didn’t anyone tell me? Turns out, my doctor thought I already knew – so yes, it’s extremely important to always ask your questions!** **What do your conversations with your doctor look like and how do you work with them to achieve your goals?** **KO:** Today, my conversations with my doctor are a lot simpler than they used to be. I’m not asking as many questions as I was in the beginning when I was trying to figure out what epilepsy was. Starting out, I would ask in-depth questions about the symptoms I was experiencing during and after my seizures and what I should expect in the future. Now, my doctor and I mostly discuss next steps as it relates to my treatment and life goals. **LW: If you had to define your epilepsy goals, what would they be?** **KO:** It’s definitely different for everyone. Being four months seizure-free is huge for me. If I could go four months at a time without seizures, that would be amazing. I’m really happy with where I am right now and if I can continue on this path that would be fantastic. Again, everyone’s steps toward zero are different, but it’s so important to set goals and to work with your neurologist toward those goals. Say them out loud, write them down and make them heard. **LW: What is the one piece of advice you’d give to someone with epilepsy that you can’t find online?** **KO:** Staying positive and getting in your right head space is something you can only do for yourself. Your dad can’t do that for you, and neither can your mom, your husband, your fiancé, your sister or your best friend. You are the only person in your life who can get yourself in your right headspace. It’s tough for anyone. It took me a long time, and I sometimes still struggle with this. If you can find something that gives you the feeling of being okay, do it. That’s what golf is for me – that right spot, the right headspace. When I go out on the golf course or the driving range, I find it. If you can find your sweet spot, like golf is for me, do it. **LW: It can be hard to find your “thing” to do. Sometimes, you need to find something that brings you joy from your couch because that’s where you’re stuck. I colored in coloring books a lot from my couch. Finding peace in small things like coloring books was something I found to be hugely helpful.** **Finding and connecting with other people with epilepsy has been one of the most powerful things for me. When I first met another woman who had also been diagnosed with epilepsy as an adult, I immediately burst into tears. Now, some of my best friends have epilepsy. Even though we talk about how different epilepsy is for everyone, there is still that thread that connects us, because you’re with someone who really gets it. Kenzie, thank you for sharing your perspective.** **I want to gently encourage everyone with epilepsy to continue sharing your epilepsy stories and what zero seizures means to you on social media using #STEPSTowardZero. It has been so inspiring to see the connections that have been made and hear the amazing stories that have been shared as part of this movement.** [*Learn about the steps you can take in your pursuit of zero seizures*](https://www.stepstowardzero.com/)*.* *The STEPS Toward Zero movement encourages people living with epilepsy to revisit their treatment goals and access resources available on* [***www.STEPSTowardZero.com***](http://www.stepstowardzero.com/) *including a doctor discussion guide, telehealth tip sheet and seizure journal, to prepare for conversations with their doctors about the possibility of zero seizures.* If you’d like to stay connected with Landis, please follow her on Instagram ([@landiswiedner](https://www.instagram.com/landiswiedner/)) or Twitter ([@BillieTopanga](https://twitter.com/BillieTopanga)). If you’d like to stay connected with Kenzie, please follow her on Instagram ([@kenzie.oconnell](https://www.instagram.com/kenzie.oconnell/)). ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Blog Relay, Jun 22 EBR Posts, Partner, SKLifeScience --- ### [Epilepsy Blog Relay: I'm tired of fighting within the epilepsy community](https://livingwellwithepilepsy.com/epilepsy-stories/tired-of-fighting-within-the-epilepsy-community.html) **Published:** June 15, 2022 **Author:** Jessica K. Smith **Excerpt:** Frankly I'm tired of the fighting among members of the epilepsy community. The fact that the epilepsy community is so fractured is only hindering all our work. **Content:** ## ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/06/pexels-musa-ortac-3586873-scaled-e1655319952845-874x1024.jpg "pexels-musa-ortaç-3586873 – Living Well With Epilepsy")Tired of fighting in the epilepsy community I thought about making the title of this post, “Many hands make light work” but that just felt too positive because frankly I’m tired of the fighting among members of the epilepsy community. The fact that the epilepsy community is so fractured is only hindering all our work. Today I was informed that by sharing livingwellwithepilepsy.com stories on the [SubReddit page for epilepsy](https://www.reddit.com/r/Epilepsy/), I had “offended” the two owners of the page. In years past, the leaders of this subreddit had not even bothered to allow me to post, just simply blocked me from participating at all. I’m not certain if I was seen as a threat or what. **I honestly don’t care at this point.** They are just an example of the larger issue. This is not the first time I have been blocked, hindered, sidelined etc. possibly for fear I take someone else’s glory or reap too many benefits. Which by the way, is not why Living Well With Epilepsy was created at all. ## For the record For the record, in this scenario, I attempted to gain wider visibility for the stories that were submitted as part of the epilepsy blog relay. Bear in mind that most of these stories are from readers like you. Just everyday folks who are doing their best to manage their epilepsy. Each of these stories are edited by me (not a team of people, just me a person with epilepsy, and sometimes help from one other talented writer with epilepsy). This is not a mega machine. It is one woman trying her best to make a difference. ## Epilepsy has enough problems Honestly, if you look at the results from the story on [Epilepsy Stigma](https://livingwellwithepilepsy.com/2022/epilepsy-blog-relay/epilepsy-stigma-in-teens-and-adults.html "Epilepsy Blog Relay: Epilepsy Stigma in Teens and Adults"), and the story on [SUDEP Statistics](https://livingwellwithepilepsy.com/2022/personal-epilepsy-stories/my-beef-with-sudep-research.html "Epilepsy Blog Relay: My beef with SUDEP Research"), we have enough problems without causing issues for one another. And if you take a look at my story on [what a cancer diagnosis taught me about living with epilepsy](https://livingwellwithepilepsy.com/2022/epilepsy-blog-relay/epilepsy-blog-relay-5-things-cancer-taught-me-about-epilepsy.html "Epilepsy Blog Relay: 5 things Cancer taught me about Epilepsy"), you will get even more clarity on the fact that I am only trying to amplify voices and make a difference. ## Lost patience I have lost patience with the infighting and you should too. Until we all get fed up with this way of working, nothing is going to change. People with epilepsy will continue to be isolated and sidelined, and limited change will happen. Its time to work together. ## I’d love to hear your thoughts. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Blog Relay, Epilepsy Stories, Jun 22 EBR Posts **Tags:** epilepsy community --- ### [Epilepsy Blog Relay: Epilepsy Stigma in Teens and Adults](https://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-stigma-in-teens-and-adults.html) **Published:** June 14, 2022 **Author:** Jessica K. Smith **Excerpt:** We've taken a close look at epilepsy stigma and wanted to share the similarities and differences in how teens and adults respond to epilepsy stigma in real life **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/06/Epilepsy-Stigma-Survey-header1-1024x538.png "Epilepsy Stigma Survey header(1) – Living Well With Epilepsy") At Living Well With Epilepsy we’ve looked at [epilepsy stigma](https://livingwellwithepilepsy.com/category/aboutepilepsy/stigma) over the past few years through several surveys and wanted to take a few minutes to share with you what we have found. Included you will find similarities and differences in how teens and adults respond to [epilepsy stigma](https://onlinelibrary.wiley.com/doi/pdf/10.1046/j.1528-1157.44.s.6.2.x). ## Epilepsy Stigma Surveys **In 2019** I ran a survey asking questions on epilepsy stigma between 6/3/2019 and 6/25/2019 and gathered 200 responses. 85% of the respondents were female, 12% male, and 3% gender diverse. Additionally **60% of the respondents were under the age 18**. Respondents were driven to the survey via LivingWellWithEpilepsy.com, Instagram, and Facebook. No participants were paid, all participation was voluntary. **Then in 2022,** I ran a very similar survey on epilepsy stigma **however, NONE of the respondents were under the age of 18**. This second Epilepsy Stigma Survey ran between 4/11/2022 and 6/13/2022 and gathered 53 responses. 66% of the respondents were female, 32% were male and 2% were gender diverse. Respondents ages ranged from 18-65+, with 38% in the range of 35-44. Respondents were driven to the survey via LivingWellWithEpilepsy.com, Instagram, and Facebook. No participants were paid, all participation was voluntary. Currently the survey is still open. ## The Survey Results Below I have included a few graphics to show the similarities and differences in responses. In both surveys we asked the following: ## Are you ever embarrassed by your epilepsy? A resounding 83% of teens (13-18) responded yes, they are embarrassed by their epilepsy. However, when only adults ranging from 18-65+ were asked the same question, the answer was still yes, but from a much lower 54% of the respondents. [![Are you ever embarrassed by your epilepsy?](https://livingwellwithepilepsy.com/wp-content/uploads/2022/06/1-1024x1024.png "Are you ever embarrassed by your epilepsy? – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/1-5) ## Do you try to hide your epilepsy? When asked if they try to hide their epilepsy, 67% of teens (13-18) responded yes. Correspondingly, adults ranging from 18-65+ were 45% responded yes to the same question. ![Do you try to hide your epilepsy?](https://livingwellwithepilepsy.com/wp-content/uploads/2022/06/2-1024x1024.png "Do you try to hide your epilepsy? – Living Well With Epilepsy") ## Do attitudes about epilepsy prevent you from doing things you love? When asked if attitudes about epilepsy prevented survey participants from doing things they love 66% of teens (13-18) responded yes. Whereas, 47% of respondents in the adult only version of the survey, adults ranging from 18-65+, responded yes to the same question. ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/06/3-1024x1024.png "3 – Living Well With Epilepsy") ## A Difference in Attitudes on Epilepsy Stigma Teens and Adults diverged when it came to the lengths they were willing to go to hide their epilepsy. I asked the following questions in each survey and found vastly different responses: ## Do you hide your epilepsy from those you date? When it came to dating, 50% of teens (13-18) responded yes they hide their epilepsy from those they date. However, a resounding 86% of respondents in the adult only version of the survey, adults ranging from 18-65+, said no, they do not hide their epilepsy from those they date. ![Do you hide your epilepsy from those you date?](https://livingwellwithepilepsy.com/wp-content/uploads/2022/06/1-1-1024x1024.png "Do you hide your epilepsy from those you date? – Living Well With Epilepsy") ## Do you hide your epilepsy from co-workers? Similarly when it came to work, 50% of teens (13-18) responded yes they hide their epilepsy from their co-workers. However, 73% of respondents in the adult only version of the survey, adults ranging from 18-65+, said no, they do not hide their epilepsy from those they date. ![Do you hide your epilepsy from your co-workers?](https://livingwellwithepilepsy.com/wp-content/uploads/2022/06/2-1-1024x1024.png "Do you hide your epilepsy from your co-workers – Living Well With Epilepsy") ## Learn More If you are interested in learning more about the survey results or discussing the possibility of running a survey in conjunction with LivingWellWithEpilepsy.com just email me at . If you just are curious to take the survey, feel free to visit the [home page](https://livingwellwithepilepsy.com), and take the survey yourself. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Blog Relay, Jun 22 EBR Posts, Stigma **Tags:** epilepsy stigma --- ### [Epilepsy Blog Relay: Taking on Imposter Syndrome and Epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/taking-on-imposter-syndrome-and-epilepsy.html) **Published:** June 11, 2022 **Author:** Jamie Wissinger **Excerpt:** Currently, Jamie is feeling a sense of imposter syndrome when it comes to her epilepsy. She's come up with a few ways to tackle it. **Content:** ## ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/06/58033117_10105026672639687_7895478332022587392_n.jpg "58033117_10105026672639687_7895478332022587392_n – Living Well With Epilepsy")Imposter Syndrome and Epilepsy Currently, I am feeling like an imposter. For those who do not know, imposter syndrome is defined as “is commonly understood as a false and sometimes crippling belief that one’s successes are the product of luck or fraud rather than skill”. When I think about my epilepsy, I can often relate to the idea of Imposter Syndrome. ## Feeling Alone I have spent most of my adult life advocating for epilepsy. I remember when I was re-diagnosed back in 2006, and knew no one that had seizures like me. It wasn’t until 2011 that I met my first few friends with Epilepsy, thanks to the Epilepsy Foundation’s community chat forums. ## Seizure Freedom In past [Epilepsy Blog Relays](https://livingwellwithepilepsy.com/author/jmes717), I have shared about the complicated goal of seizure freedom. Honestly, I know I am blessed and fortunate. I have been seizure free for over 8 years, and rarely have any complaints. I do have memory issues, and currently am working through those with a LOT of reminders, sticky notes, and calendar requests that I share with my husband.. ## Early Seizures Also, the majority of my life I have lived seizure free. I was born at 28 weeks- in the NICU for two months, and had seizures throughout my stay- however my next one wasn’t until I was 5 years old. Then, the following one was when I was 21. 16 years of freedom, and at that point doctors believed I had outgrew it. ## Imposter Syndrome and Epilepsy When it comes to imposter syndrome and epilepsy, these thoughts have been creeping into my brain for quite some time now: - Why have I been seizure free for so long? - Do I really have epilepsy? - Why are children dying from epilepsy? - Why was I able to be on the swim team for years without a worry? - Why am I able to drive? ## Educate and Empathize These questions/beliefs of being an imposter have been a constant during this season of my life. I am not sure why. However I do know a few things. I am in a position now to educate and empathize with other people with epilepsy. I am able to support (virtually and physically) families who are newly diagnosed. It is hard to continue to remain positive sometimes when living with epilepsy. But its also generally hard to stay in the negative mindset. Here are my suggestions: - Instead, focus on the positive. - Remind yourself, “I can help others.” - Remind yourself, “I can take care of myself.” - Remind yourself, “I can make smart choices to help my chronic illness.” ## Overcoming Imposter Syndrome According to the[ Cleveland Clinic](https://health.clevelandclinic.org/a-psychologist-explains-how-to-deal-with-imposter-syndrome/), “It’s about not getting stuck in the thought of ‘I can’t do this,’ but making sure that you take action and move forward.” Remember than self-doubt can be paralyzing. You can make efforts to move forward instead of getting stuck in the imposter cycle. ![author avatar](https://secure.gravatar.com/avatar/43219f821cdcb707861d4c5d783f913a94991267fb94c4c92bbab48ec46b45b8?s=300&d=mm&r=g) Jamie Wissinger [See Full Bio](https://livingwellwithepilepsy.com/author/jmes717) [ ](https://livingwellwithepilepsy.com/author/jmes717) **Categories:** Epilepsy Blog Relay, Epilepsy Stories, Jun 22 EBR Posts **Tags:** imposter syndrome, seizure freedom --- ### [Epilepsy Blog Relay: Jamie on living with epilepsy](https://livingwellwithepilepsy.com/epilepsy-blog-relay/nov-18-ebr-posts/jamie-on-living-with-epilepsy.html) **Published:** November 21, 2018 **Author:** Jamie Wissinger **Excerpt:** I have had Epilepsy my entire life and have been fortunate enough to be seizure free for almost 5 years. **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/10/IMG_3735-e1540170320911-640x616.jpeg "IMG_3735 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/portfolio/nov-19-jamie-wissinger/attachment/img_3735)This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) ***which will run from November 1 through November 30. Follow along!*** #### Jamie’s Story I’m [Jamie Wissinger](http://jamiewissinger.com/working-from-home-and-epilepsy/), live in the blugrass state with my husband, three kids, a crazy hound dog, and a fat cat! You will often find me on [social media](https://www.instagram.com/jamiewissinger/) chatting about the chronicles of Malu (our calico cat) being on a leash. I also host weekly Seizure First Aid videos on my [facebook page](https://www.facebook.com/jwVAservices/) where you can share with your network 5 tips on how to react when you see a seizure! I have had Epilepsy my entire life and have been fortunate enough to be seizure free for almost 5 years. When I was younger, I went 16 years without one! [**Read more**](http://jamiewissinger.com/working-from-home-and-epilepsy/) --- ***NEXT UP:*** Be sure to check out the next post tomorrow by Tiffany at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com) for more on epilepsy awareness. For the full schedule of bloggers visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/epilepsy-blog-relay). **TWITTER CHAT:** Save the date for the #LivingWellChat on December 6 at 12 Noon ET. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/11/EBR-Nov18-150x150.png "EBR - Nov18 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/november-2018-participants)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our generous sponsors and partners! [Become a Sponsor ](https://livingwellwithepilepsy.com/2018-19-media-kit-_all) ![author avatar](https://secure.gravatar.com/avatar/43219f821cdcb707861d4c5d783f913a94991267fb94c4c92bbab48ec46b45b8?s=300&d=mm&r=g) Jamie Wissinger [See Full Bio](https://livingwellwithepilepsy.com/author/jmes717) [ ](https://livingwellwithepilepsy.com/author/jmes717) **Categories:** Nov 18 EBR Posts --- ### [Epilepsy Blog Relay: New epilepsy diagnosis after seven years](https://livingwellwithepilepsy.com/epilepsy-stories/new-epilepsy-diagnosis-after-seven-years.html) **Published:** June 8, 2022 **Author:** Guest Contributor **Excerpt:** After seven years of struggling to get a proper epilepsy diagnosis, Laura found a neurologist who would listen. She's now a year seizure free! **Content:** ![laura](https://livingwellwithepilepsy.com/wp-content/uploads/2022/06/186045055_10227362989407409_7677532019333254784_n-1024x1024.jpg "186045055_10227362989407409_7677532019333254784_n – Living Well With Epilepsy") After seven years of struggling to get a proper epilepsy diagnosis, Laura finally found a neurologist who would listen. She’s now a year seizure free! ## Laura’s Epilepsy Diagnosis Epilepsy… that’s a word I’ve only learned to say in the last year or so! I had my first seizure in my 2nd year of pharmacy school. I was 21. That day changed my life in ways that I didn’t expect. I was walking through campus at the University of South Carolina between the parking lot and pharmacy school. I had been battling a sinus infection, double ear infection and strep throat and suddenly started feeling dizzy and nauseous. Like the feeling you get at the top of a rollercoaster when your stomach is about to drop! I managed to find a bench outside the library and sat down and when I “came out” of it, I didn’t remember what I was doing or where I was. ## Maybe it’s heart disease? My second seizure didn’t occur for another 4 or 5 months. I was referred to a cardiologist because my heart races before and after a seizure. They discovered that I had a [right bundle branch block](https://my.clevelandclinic.org/health/diseases/21692-right-bundle-branch-block) and had me wear a holter monitor for 2 weeks. I continued to have “spells” but nothing showed on the monitor. They placed a [continuous EKG](https://myhealth.alberta.ca/Health/aftercareinformation/pages/conditions.aspx?HwId=abs1713) and referred me to a [neurologist at Duke](https://neurology.duke.edu/), close to my parents. ## What the heck are pseudoseizures? I tried a number of medications and had a number of tests run however nothing showed up on these tests that gave a reason for my seizures so they labeled them [pseudoseizures](https://www.ncbi.nlm.nih.gov/books/NBK441871/) and changed my medications again. After 2 years, I had the EKG monitor removed once it was evident to my cardiologist that it was not to do with my heart. During this time I poured into advocacy and volunteering for the [Alzheimer’s](https://livingwellwithepilepsy.com/2021/aboutepilepsy/epilepsy-research/study-shows-childhood-onset-epilepsy-accelerates-brain-aging.html) Association, another cause near to my heart, as a way to distract and redirect the [anxiety I was feeling](https://livingwellwithepilepsy.com/2021/personal-epilepsy-stories/patience-and-epilepsy-a-great-ally-when-it-comes-to-managing-stress.html "Patience and Epilepsy: A great ally when it comes to managing stress"). I also learned a lot about who would be there to support me. I knew that I was having seizures but because I don’t have tonic-clonic (grand mal) seizures sometimes people thought I was just spacing out for a few minutes and they didn’t take it seriously. ## Finally, a neurologist that listens In 2021, I was finally able to [find a neurologist ](https://livingwellwithepilepsy.com/2022/epilepsy-blog-relay/what-doctor-should-i-see-if-i-had-a-seizure.html "Epilepsy Blog Relay: What doctor should I see if I had a seizure?")local to me in Columbia, SC. Shortly before my first appointment with her, I joined a few support groups on Facebook. On one of them, I found out about a [book ](https://bookshop.org/shop/livingwellwithepilepsy)about a woman’s journey with temporal lobe epilepsy, the same kind of seizures I had determined through my research that I had. I bought her book but didn’t read it for a while. One day, I was having a really bad day with my depression and just started reading. I finished the whole book within the day and the whole time I said “This woman is in my head. This is me!”. By the way, if you want to read the book, it’s [Seized and Driven by Suzanna Price](https://www.amazon.com/dp/1949021254/ref=olp-opf-redir?aod=1&tag=wwwcampusboocom587-20&condition=new). I took some of Suzanna’s advice and asked my new doctor if she would consider do an extended EEG for me. Four days before my 28th birthday, I entered the hospital for my 5-7 day EEG. We were able to detect enough activity that my doctor was able to release me in the morning of the my 28th birthday! She said to me that morning, “This is real. You are not making this up in your head. We’re going to figure this out.” She had a student with her that day and encouraged him to make sure to always listen to his patients! ## One year seizure free I’m now on a new medication and about a year seizure free! My journey with epilepsy continues but this is just a glimpse! ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, Epilepsy Stories, Jun 22 EBR Posts, Newly Diagnosed --- ### [Epilepsy Blog Relay: Developing a creative life while managing epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/developing-a-creative-life-while-managing-epilepsy.html) **Published:** June 7, 2022 **Author:** Caroline Parker Boyd **Excerpt:** Caroline has found that managing her epilepsy has allowed her to be true to herself and focus on the creative work she is passionate about. **Content:** ## ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/06/Profile2022-900k.png "Profile2022 900k – Living Well With Epilepsy")Caroline’s Story As anyone who lives with epilepsy knows, balancing adult life and caring for your physical and mental health can be incredibly challenging at times. I was put to the test at a young age, as my father passed away from cancer when I was 10 years old, and a mere 2 months after that I was diagnosed with tonic clonic seizures, and immediately put on Tegretol to counteract them. Some older kids bullied me for my epilepsy, even though I had it mostly under control. I was an intelligent, gifted student, and few people could see that. ## Early signs of creativity Let me go back a bit. As a child I had always loved being creative. While at pre-school as a child, I loved to draw. Crayons, finger paints, you name it. But my skills as an artist first appeared in preschool. I had drawn my own house in the background of the page, and a large squirrel sitting on a tree with a nut in its paw. When my teacher asked what it was, I had told her I imagined a shot of the squirrel, then zooming into my house with me sitting in the window. She was amazed I had managed depth perception at age 4, and that picture, however crude it may be, still hangs at that preschool today. I even started playing tennis at the age of 6, and became a well rounded player as a child. ## A few wobbles but then seizure control In high school I was an incredibly shy person, but slowly befriended the artistic kids and made it on the Varsity tennis team. I was always the odd one out, but my medication was working and it seemed like I was growing out of my epilepsy. My neurologist at the time started weening me off my meds, and everything was working out. Then one day as I was working a shift at the local movie theater, I had a seizure. My boss didn’t know what to do, and my mom came to get me. My dosage went up, seizures under control, I won awards for my artistic work, had a 100 mph serve and became one of three captains of the Varsity Tennis team. It seemed like I was going to be ok. ## Lack of sleep as a seizure trigger Fast forward to college. I started off as an animation major because I had advanced to drawing realistic pencil sketches of human faces and poses. But after my first year I realized that I couldn’t draw fast enough to make animation a viable career. So I switched to film. In that first year I didn’t have any seizures, and my medication (Tegretol) seemed to be working at the time. However I became bad about taking my meds daily and getting enough sleep every night. I was excelling in my film work and even studied abroad in London (without any seizures during that time); I was feeling pretty good (and with good reason). However, once I returned to the states and senior year came around, I was constantly on film shoots and editing footage in the computer lab for class. This led to little sleep and the occasional grand mal seizure thrown into the mix. I even had a seizure in the shower once, after 3 hours of sleep. Thankfully my roommates at the time were able to take me to the local hospital, where I was taken care of. But that experience caused me to be more cautious about taking care of myself, and thankfully I had a few years without an incident. ## Taking on grad school After graduating, the only prospect I had was an unpaid internship at a company called Project Twenty1, which did help me to expand my film network immensely. I also worked on my own short films in my spare time but was unable to secure a job that would pay me a sustainable wage. I worked at Ben & Jerry’s and Starbucks to make ends meet but working with Project Twenty1 on various webseries and short film projects was my passion. I decided I wanted to give grad school a try, as I wanted something more than the life I was living. I applied to [Columbia University’s Creative Producing program](https://arts.columbia.edu/film/degrees-concentrations#MFA) on a whim, thinking my film work wouldn’t be enough, but I had nothing to lose. And miraculously, I was accepted. I gave notice at my jobs in Philadelphia and moved to New York, close enough to campus that I could walk. I have to say, the first time I stepped through the Columbia campus gates, I did have chills. It was a new chapter of my life and I was ready for it. I started my classes, and I won’t lie, it was difficult. I was balancing assignments, odd film shoots for class at random hours, and making time to rest. The assignments alone were constant, the film shoots running 16 hours or more (depending on the scope of the project), and that doesn’t even come close to the amount of pre-production (preemptive work before a film shoot) that each film required. It’s the producer’s job to organize every minute detail on these projects. Which is a thankless job, but someone has to do it. And I relished every second. It’s rare to find a passion and get a boost of endorphins from it on an almost daily basis for roughly 2 years. I worked on over 30 shorts in various capacities during my time at Columbia and produced some 10 films of my own. I was always honest with everyone about my epilepsy the entire time, and they respected my boundary of needing at least 6 hours of sleep between shoot days to function. Which did work for a time. ## A perfect storm However, in November of my first year at Columbia, I had an unfortunate case of insomnia for about a week and made the bad decision of going to a movie early on a Saturday morning after 5 hours of sleep. And that film happened to be *Interstellar*, which is arguably one of the most unnecessary strobe sequence-filled movies of all time. Now I have a high tolerance for photosensitivity (which I am incredibly grateful for), and I got out of the theater perfectly fine. I was not feeling well after the film and went back to my apartment to sleep it off, as I had a hard week and deserved to rest. I took a nap, woke up, starting walking to the kitchen for a glass of water, and had a grand mal seizure in the living room. I had blacked out but my roommate (who was home at the time) called 911 and I went to the emergency room. ## A reality check I called my new neurologist at the Columbia Neurological Institute and told her about the seizure, so we scheduled an appointment. I explained my busy lifestyle in grad school to her and how I didn’t have time to rest. She was the first neurologist I ever had who told me that 1 in 1000 people die while having a seizure, and that condition is known as [SUDEP](https://livingwellwithepilepsy.com/sudep "SUDEP"). As unbelievable as it sounds, that was the first time any of my previous neurologists had told me that. And I was in my mid-twenties at the time. My neurologist switched me to Trileptal, and I started taking my meds on a regular basis while also focusing on sleep. As I was transitioning meds I had one seizure in my bed while I was sleeping, but it was an improvement from my previous medication. I kept my seizure free streak going after that, but it isolated me from my classmates, as I couldn’t go out drinking a few times a week as they were doing on a regular basis. I tried to keep up with parties, etc., but as my mental health had deteriorated over the isolating weekends, when I attended these parties, I would vent to random people about my past traumas (which none of my classmates could relate to). I stopped being invited to parties, but it was for the best. I stepped away from my classmates socially in my second year as I realized they didn’t care about my wellbeing and were simply using me for my plethora of logistical and practical expertise. I could have spent my valuable rest time making a fourth project to produce (which most of my classmates were doing), but I didn’t because I wanted to focus on my health. And I’m glad I did. ## Finding the right job I could have done more in my third year in the program but spent my time working on film project after film project until I finished my thesis short film. I interned at a small but successful production company, and sadly taking Trileptal had caused me to gain 40 pounds over 6 months or so. I hadn’t changed my diet or anything, it just started adding on. After I graduated Columbia, I lost my health insurance and was stuck literally work at a temp agency for a year then being hired by a finance firm as an assistant to a C-suite executive. I hated that job. My superiors never utilized my potential and looked down on me for not understanding the nuances of a skill that I never trained in. In 2018 I also developed a severe sodium deficiency and bone loss because of my medication. My new neurologist put me on Clobazam for my severe anxiety, and sodium pills to counteract the lack of sodium in my bloodstream. Going to therapy also helped immensely, and I became more confident in myself. I then started a medication transition from Trileptal to Lamictal in early 2021 and began having cognitive issues because of the change. My work at the finance firm was suffering, and my superiors noticed. I could feel I would be fired soon, so instead of having that on my resume I quit. The company never appreciated anything I did and I know I was paid much less than others in my position, so I saw it more in a positive light. ## Finally on the path I was unemployed for a month and was then recommended by a former classmate for a position and hired as an Associate Producer for events at the AMC Theater in Times Square on a freelance basis, which was a great experience. I invested in a few professional development courses (including a certificate in Diversity and Inclusion from Cornell), formed my own production company, Parker Pictures, and in February of 2022, began working as Head of Media Production at EveryGirl Enterprises. Producing written and video content for the upcoming digital magazine, while also managing interns and creating consistent workflows for the future. I’ve made friends and contacts who are encouraging me and themselves to be who we are meant to be, and I feel a sense of relief that I have not felt in years. One year after quitting a job that I despised, I have thrived. I’m now 7 ½ years seizure free, have come into a growth period of my life that I would have dreamed of last year. I may not be making the money I would like, but I enjoy what I’m doing and living in the Big Apple with all its rich culture and history. I’m now able to be my most authentic and best self and am working towards a career that I am more than qualified for. Being creative as an able-bodied person is considered difficult, but it becomes even more so when you are disabled. You have to navigate health care, prescription costs, MRI’s, EEG’s, and sometimes brain surgery. It’s a grueling process but putting the time and energy in focusing on my health has allowed me to focus on the work I care about. And at the end of the day, that’s what is important. Being true to yourself, while also taking care of your wellbeing. It’s been hard work getting to this point, but it was definitely worth it. ![author avatar](https://secure.gravatar.com/avatar/d7f99d25a981158999ca8c3c85f24786512682e8cb5842e7ba4762bd0884be21?s=300&d=mm&r=g) Caroline Parker Boyd Caroline Parker Boyd is the Founder and CEO of [Parker Pictures](https://parkerpictures.com/about-the-founder), and the President and CEO of Sapphire Compass Group. She is an epileptic producer and Diversity and Inclusion consultant. While some see her disability as a crutch, she a way to tell stories from a different perspective. [See Full Bio](https://livingwellwithepilepsy.com/author/carolinepb) [ ](https://livingwellwithepilepsy.com/author/carolinepb) **Categories:** Epilepsy Blog Relay, Epilepsy Stories, Jun 22 EBR Posts --- ### [Epilepsy Blog Relay: Help from an epilepsy support group](https://livingwellwithepilepsy.com/epilepsy-stories/how-an-epilepsy-support-group-can-help.html) **Published:** June 2, 2022 **Author:** Soo Ihm **Excerpt:** Early on, Soo's family would not use the word epilepsy in their home. Now, she is an advocate and makes the most of her local epilepsy support group. **Content:** ## ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/05/164_img_0924-723x1024.jpg "164_img_0924 – Living Well With Epilepsy")Hidden in plain sight When I was a child, the word “epilepsy” was never said in my house. My parents refused to call the disease by its rightful name. They used the euphemism “hand’ because my hand would droop down during a seizure. However, as the years went by and I hit adolescence, the hormones changed my seizures. I went from having “petit mals” ([absence](https://livingwellwithepilepsy.com/category/types-of-epilepsy/absence-seizures)), to complex partial and “grand mals” ([tonic clonic](https://livingwellwithepilepsy.com/category/types-of-epilepsy/grand-mal)). I wanted to know what was happening to me, so finally, when I was 13 years old, I sent away for some information about epilepsy and educated myself. I read all the brochures and pamphlets I received voraciously, learning everything I could. (This was before the Internet existed.) ## The importance of a name From then on, I insisted on using the word epilepsy. It would no longer be a badge of shame. I think this surprised my parents, and that they were secretly proud of me, although they never said so. They immediately dropped the euphemism. That’s not to say it didn’t frustrate me. I continued to get into scrapes because of my seizures. I had many seizures where I fell and hit my head. I had to get staples in my head many times over the years. At the same time, despite all the accidents I have had, I have been very lucky; nothing has ever gone wrong with me mentally or physically. Still, with all the medications I was trying, I was getting nowhere. I was like a zombie. I gained weight, lost weight (too fast), was dizzy, had double vision. And still the seizures didn’t go away. At my lowest points, I had to remind myself that things could be a lot worse. Before moving to southern California, I had an epilepsy support group. However, it was more like a session to vent our issues without resolving them. In California, it was like a whole new world opened up. ## How an epilepsy support group can help The [Epilepsy Support Network of Orange County (ESNOC)](https://esnoc.org/) provides access to the best resources in the community, including epilepsy centers with the best epileptologists. They get to know you and your needs, to match you up with the right doctor. They have monthly meetings which include the Epilepsy Expert Series, in which a specialist talks about a specific epilepsy-related topic, such as medications, surgery options, EEGs, and what to expect in a diagnosis. There are also social groups for parents, children, teens, and adults. Epilepsy 101, a one-hour class on the basics of epilepsy is also provided as part of the monthly meeting. The ESNOC also offers a Seizure Recognition and First Aid presentation to anyone in the community, such as schools, churches, businesses, etc. This is all made possible because of the organization’s founder and Executive Director Janna Moore. She is the driving force behind achieving seizure freedom and a better quality of life for people with epilepsy. Although many of us still live with seizures and its effects, the ESNOC is there to educate and support. ## Finding an epilepsy family The ESNOC is like a family. The members all get to know each other. We share personal stories and try to help each other out. The glue that holds it together is our annual Epilepsy Walk fundraiser, which takes place each spring. Janna’s team does a superb job organizing the Walk. There is a carnival, silent auction, outdoor barbecue lunch, and DJ. There is also a hula hoop contest and other surprises. It is a really good event to be surrounded by friends, and to know that you have raised awareness about [epilepsy](https://livingwellwithepilepsy.com/epilepsy "About Epilepsy: The Basics"). Many people have never seen a seizure. It must be scary to them to be introduced to it for the first time. That’s why we need to continue to talk about it, so future generations of families do not have to deal with the stigma of epilepsy. Thanks to the [Epilepsy Support Network of Orange County](https://esnoc.org/), we can work on eradicating seizures and stigma. Terms and Agreement I agree ![author avatar](https://secure.gravatar.com/avatar/d52fbb50f14201cb1c4aa52292adb331e89b5086a1db0c1711fed2af943b5367?s=300&d=mm&r=g) Soo Ihm Soo writes the blog Soo’s Epilepsy Corner and is a regular contributor to Living Well With Epilepsy. She lives in Orange County, California. She enjoys traveling, and has been to Europe three times. Her next journey will be just as interesting, with the RNS. [See Full Bio](https://livingwellwithepilepsy.com/author/sooihm) [ ](https://livingwellwithepilepsy.com/author/sooihm) **Categories:** Epilepsy Blog Relay, Epilepsy Stories, Jun 22 EBR Posts, Stigma **Tags:** california, esnoc --- ### [Epilepsy Blog Relay: A seizure while driving made her hopeful](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-blog-relay-a-seizure-while-driving-made-her-hopeful.html) **Published:** June 3, 2022 **Author:** Lauren Brunell **Excerpt:** If Epilepsy has taught me anything, it’s that changing my goals is not failing. I had an absence seizure while driving on the freeway. I am more hopeful because my best friend Emily loves me despite the accident. **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/02/20200625_15144573-768x1024.jpg "20200625_15144573 – Living Well With Epilepsy")The car accident happened on a Wednesday morning, when I would normally be at work. However, a few days before, one of my roommates claimed that she had been raped by our landlord. I was in denial about this for a few days, because my best friend Emily was coming for a visit. She planned to stay with me that week. This was a trip we had been planning for years. Unfortunately, my beloved friend arrived at the worst time possible. ## Stress is a seizure trigger After a full day at work and a six-mile run, I packed up all my things and asked my parents to help me move out of the room I had been renting. I’d been living in a mansion overlooking the ocean, with a monthly rent that had always been too good to be true. My landlord came home to “talk” and make amends, so I called the police while I was packing. He did not look me right in the eyes, and I was terrified. I took Emily to stay with me at my parent’s house (who live about 45mins away). I was completely exhausted the next day, (I had been seizure-free for almost a year) but I desperately wanted to entertain Emily as she had paid a lot of money for this trip. Not considering how I was feeling, we went out to breakfast and began to drive back toward the city we had originally planned to stay in. Not a good idea. ## The accident I had an absence [seizure while driving](https://pubmed.ncbi.nlm.nih.gov/23786737/) on the freeway and totaled my car with both of us in it. I remember Emily screaming my name and telling me to pull over. As I came to, I was able to pull off the freeway exit and park my car to the side of the road. Neither of us were injured, and the other car (a huge truck) had only a small dent in its bumper. When the police asked me what had happened, I could not speak. Emily told them I had a seizure, but they continued to question me. I was so delirious; I didn’t know where I was, and I took the strangest selfie of myself on my phone to post on Instagram. I cannot explain it. This seizure was clearly stress induced. My landlord had terrified me to tears. I did not sleep well. And poor Emily. Lucky for us, I was driving in the far-right lane of the freeway, and there was an exit just as I was coming out of my absence seizure. Although my car was totaled, neither of us were injured. ### “Sometimes I feel like I have a guardian angel” – Lauren ## Becoming hopeful For those [who haven’t read my first blog post](https://livingwellwithepilepsy.com/2022/personal-epilepsy-stories/change-of-scenery-makes-world-of-difference.html), I was diagnosed with Epilepsy at the age of 24 after my first and only grand mal seizure: just moments before getting in the ocean to surf, and just weeks before moving to China to teach ESL. Three years later, my license has been revoked again, and my plans for the future have changed. Yet, I feel proud of my diagnosis. Weirdly enough, sometimes I almost feel like bragging about it. Before my diagnosis, I was the least adaptable person in the world. If things did not go as planned – rather it be in my career path or my plans for the day- I would have a meltdown. I would feel like a failure for not reaching my goals. Now, I can lose a good year of savings that I spent on a car, have my license revoked, change my career plans, and find a new home- all in one week. And I am not devastated. I am grateful to be alive. Emily is still my best friend. She loves me even though I could have very well killed her in that car accident, and even though I was acting SO WEIRD after my absence seizure. I know that not everyone has that kind of love in their life. ![author avatar](https://secure.gravatar.com/avatar/d223333747679823a3fb6c602ff61876fd692ae1078795964827b69de2a2648c?s=300&d=mm&r=g) Lauren Brunell [See Full Bio](https://livingwellwithepilepsy.com/author/lauren) [ ](https://livingwellwithepilepsy.com/author/lauren) **Categories:** Apr 22 EBR Posts, Epilepsy Blog Relay, Epilepsy Stories **Tags:** seizure while driving --- ### [FDA offers new hope for families facing rare disease](https://livingwellwithepilepsy.com/epilepsy-news-and-research/fda-offers-new-hope-for-families-facing-rare-disease.html) **Published:** May 11, 2022 **Author:** Jessica K. Smith **Excerpt:** FDA offers renewed hope for families facing rare disease with the launch of the Accelerating Rare disease Cures (ARC) Program **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/05/pexels-pixabay-473492-1024x683.jpg "pexels-pixabay-47349(2) – Living Well With Epilepsy") #### New hope for families facing rare disease FDA’s Center for Drug Evaluation and Research (CDER) is pleased to announce the launch of the new Accelerating Rare disease Cures (ARC) Program. The CDER ARC Program is intended to speed up and increase the development of effective and safe treatment options for patients and their families facing rare diseases. [LEARN MORE ABOUT RARE EPILEPSIES ](https://www.epilepsysparks.com/rare-epilepsy-glossary) #### Drug development in rare disease states Drug development for the approximately 7,000 rare diseases and conditions can be complex for many reasons. There can be challenges with using well-established [clinical trial designs](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3083073/), and [endpoint selection](https://www.fda.gov/media/133752/download) can be complex if there is a limited understanding of the[ natural history](https://www.fda.gov/regulatory-information/search-fda-guidance-documents/rare-diseases-natural-history-studies-drug-development) of the disease. Small patient populations can also make it difficult to perform and interpret rare disease clinical trials. Despite an increase in approvals for novel drugs to treat rare diseases and conditions, there is still a tremendous unmet need for FDA-approved treatments. The new CDER ARC Program will help support the development and approval of safe and effective treatment options for patients through scientific and regulatory innovation and engagement. #### Future of rare CDER is optimistic about the future of rare disease drug development and is looking forward to continuing this important work under the new CDER ARC Program — together with patients, advocacy groups, academics, industry, and other partners — to address the significant unmet needs of patients and families living with rare diseases. For more information about the CDER ARC Program, please visit . [LEARN MORE ](https://www.fda.gov/about-fda/center-drug-evaluation-and-research-cder/cders-arc-program) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** News and Research **Tags:** rare disease, rare epilepsy --- ### [Epilepsy Blog Relay: Chantal writes a letter to epilepsy](https://livingwellwithepilepsy.com/epilepsy-blog-relay/chantal.html) **Published:** April 29, 2022 **Author:** Jessica K. Smith **Excerpt:** Chantal has been battling epilepsy for 19 years with the help of VNS. She shares a recent letter to her epilepsy. **Content:** ***[![](http://livingwellwithepilepsy.com/wp-content/uploads/2016/10/IMG_00641-225x300.jpg "img_00641 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/portfolio/nov5-16/attachment/img_00641)***This story is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay). #### Chantal’s Story Epilepsy in everday life, I think we all know it’s not always that easy. But you can make a difference in the perspective on how you look at being diagnosed with Epilepsy. And whether or not you let Epilepsy control your life. Couple of months ago I wrote another blog, because I noticed some of my followers are from overseas. I’m from The Netherlands. As you might have read I have a VNS, for almost a year now. The settings of my VNS were modified multiple times in the last couple of months. It’s still not really working for me yet, so my Epilepsy-counselor and I are still looking for the settings that will hopefully give the results we want! If we find a setting that works, it will change my life! I still have 10-15 seizures a day. For those who are familiar with VNS, you know that it comes with a magnet. I have not had the chance to try it out as often as I want, to be sure it really works with the Tonic-Clonic seizures. But the times I have used it, it seemed to reduce the seizure a bit. Which is a good thing! #### A letter to my epilepsy I think it’s important to make ‘fun’ of Epilepsy. So my blogs contain humor, sarcasm and self-mockery. It sure helped me to accept all of this. I often write ‘letters’ to my Epilepsy, so I choose to do the same for this Epilepsy Blog Relay. *Dear Epilepsy,* *You blew away several certainties in life. I am fighting this battle now for almost nineteen years. You force me deal with you every single day. But I won’t put the blame on you, you are just being you. Doing what you do best. But you, dear Epilepsy, should not take me for granted. Accepting you the way you behave, you should be thanking me for the way I treat you and deal with you.* *I won’t lie to you that I sometimes really hate you. You have a lot of power, but it’s a waste of time. Because I not giving up to find a good combination with medication and the VNS that I got implanted specially for you, close to my heart. I will keep you company. And if I could I would wrap my arms around you. Instead of being in my brain with your electric superpowers, I would put you under my skin to keep you warm.* *You have these sudden moves, but they don’t scare me anymore. So welcome to my life, accepting you for what you do.* *It took me a while, but I have found a way to cope with your flaws. I embrassed you. I know that you are here to stay. But you, dear Epilepsy, never will have a hold on me.* *With love,* *Chantal* Don’t miss tomorrow’s story in the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay). [PARTICIPATE IN THE JUNE EPILEPSY BLOG RELAY ](https://forms.gle/zAcBEQk8xTDthbBs7) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Apr 22 EBR Posts, Epilepsy Blog Relay, Treatments **Tags:** Epilepsy Blog Relay --- ### [Epilepsy Blog Relay: Shedding light on my epilepsy](https://livingwellwithepilepsy.com/epilepsy-blog-relay/shedding-light-epilepsy.html) **Published:** April 26, 2022 **Author:** Guest Contributor **Excerpt:** After 38 years of secrecy, Alison is now shedding light on epilepsy by sharing information and being open about her condition. **Content:** #### ***[![7tbl5xjf8hvcg80pzfhd_400x400](http://livingwellwithepilepsy.com/wp-content/uploads/2016/10/7tbl5xjf8hvcg80pzfhd_400x400-300x300.jpeg "shedding light on epilepsy – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/portfolio/nov22-16/attachment/7tbl5xjf8hvcg80pzfhd_400x400)***Alison’s Story In 1976, I had my first tonic-clonic seizure. I was in my high school hallway between classes (read: spectators all around), having felt all morning as though I was disconnected, somehow reading everyone’s minds. What an aura. ***This story is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay).*** The next thing I knew I was in the Concord, NH, hospital, while they tried to determine if I was “an epileptic.” And so began my feeling of being the other, of being weird, and of humiliation. My cognitive abilities just weren’t what they used to be. Was it the epilepsy or the phenobarbital that, at the time, was the go-to medicine for teens? Regardless, it was me, and I was less of a person to my way of thinking. Fairly soon, I moved onto more effective meds, which allowed me control. My self-esteem stayed damaged though, and like so many, I hid my condition. I only dealt with it when I would forget to take pills and have a full-out grand mall seizure – usually with people who didn’t expect it because, that’s right, I hadn’t told them about my epilepsy. #### Hiding in the shadows What a waste. Not only was I in a dangerous part of the shadows, I wasn’t handling the root of my problem, the stigma. Furthermore I was missing out on an opportunity to help many others’ find their way out of their uneasiness about epilepsy by giving them the information they need to view it realistically. As the years went on, I had seizures every few years, but only when I forgot to take my meds. Because I was covering up my epilepsy, I hadn’t told people around me at work or even good friends that I have epilepsy. It was a shock to all. And I owe them apologies for having put them through my tonic-clonic episodes without knowing how to respond. #### Shedding light on epilepsy Growing weary of my self-diminishing secrecy, I decided to change 38 years later. I looked for opportunities to tell others with whom I have a positive relationship that I have epilepsy, how common a condition it is on a wide spectrum, and how to handle someone having a seizure. I found openings when asked what my medical bracelet was for and waited for other appropriate moments to begin spreading the word. It got easier and easier, and my hypothesis is that the stigma often lies in others’ fears began to bear out. I could see the body language unclenching as those I spoke to learned facts that put them at ease with the possibility of being faced with a seizure and not knowing what to do. #### Courage to carry on Granted, these may be especially open-minded people, but it did bolster my courage to continue on. I’ve found that almost all those I’ve told haven’t let me down. Don’t miss tomorrow’s story in the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay). [PARTICIPATE IN THE JUNE EPILEPSY BLOG RELAY ](https://forms.gle/zAcBEQk8xTDthbBs7) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Apr 22 EBR Posts, Epilepsy Blog Relay **Tags:** Epilepsy Blog Relay --- ### [Epilepsy Blog Relay: On Accepting Epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-blog-relay-on-accepting-epilepsy.html) **Published:** April 25, 2022 **Author:** Jessica K. Smith **Excerpt:** Accepting epilepsy as a part of my everyday life only happened when I felt the slightest bit of control and ownership over this new obstacle. **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2016/05/Self-Picture.jpg "Self Picture – Living Well With Epilepsy")This story is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay). #### Jillian’s Story I had my first tonic-clonic seizure on July 27, 2012. I was 20 years old; perfectly healthy, getting ready to start my senior year of college and turn the big 21 in just a couple weeks. After MRI’s, EEG’s and meeting with a local neurologist, I was told I had abnormal brain waves and would now be considered epileptic. I was put on medication and that was that. I had almost forgotten about the bizarre occurrence when I had my second tonic-clonic seizure nearly two years later on May 24, 2014. For the past two years now I have experienced about one to three per month. When I first began my journey through Epilepsy, I refused to consider myself epileptic. After all, there were people working through far worse cases of this complicated neurological disorder. I felt guilty telling people that I was epileptic. I felt like I was just looking for their pity and compassion. That I was just whining and serving as an annoyance if I talked about it since I didn’t seize every day and I was otherwise healthy. But no- One seizure is too many. We need to talk about it. There needs to be awareness. #### Accepting epilepsy The day I finally accepted Epilepsy as a part of my everyday life is when I finally felt the slightest (key word: slightest) bit of control and ownership over this maddening new obstacle in my life. I may not have a seizure every day, but I do wake up every morning with the same fear and the same hope. I do resort to cabs and friends to drive me where I need to go. I do swallow an increasingly large handful of anticonvulsant medications two times a day. I do endure the side effects these drugs bring with them. With acceptance comes peace. With peace comes strength to take control of your life no matter the obstacle. Don’t miss tomorrow’s story in the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay). [PARTICIPATE IN THE JUNE EPILEPSY BLOG RELAY ](https://forms.gle/zAcBEQk8xTDthbBs7) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Apr 22 EBR Posts, Epilepsy Blog Relay, Epilepsy Stories --- ### [Epilepsy Blog Relay: Does hot weather affect epilepsy?](https://livingwellwithepilepsy.com/epilepsy-stories/does-hot-weather-affect-epilepsy.html) **Published:** April 24, 2022 **Author:** Jessica K. Smith **Excerpt:** When warmer weather rolls around I begin to wonder does hot weather affect epilepsy? Well, turns out I wasn't the only one wondering. **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/04/pexels-b-pixels-2538225-1024x767.jpg "pexels-b-pixels-2538225 – Living Well With Epilepsy")My seizures have been controlled for years but I’ve always felt a little off when I get too hot. When warmer weather rolls around I begin to wonder does hot weather affect epilepsy? #### Epilepsy and Hot Weather Well, turns out I wasn’t the only one wondering. According to a survey conducted by the Epilepsy Society (UK) in June 2020, showed that 62% of respondents with uncontrolled seizures saw an increase in their seizure activity during hot weather. In a report on the survey, the Epilepsy Society noted, “More than 1,000 people responded to our survey, including 969 people whose epilepsy does not respond to current treatments. A total of 598 of this group said that they experienced a change in their seizure activity during very hot weather. This included an increase in frequency, severity or a ‘breakthrough’ seizure even when they considered their epilepsy to be generally well controlled.” #### Epilepsy and Climate Change Additionally, 40% of respondents expressed concern that climate change would affect their epilepsy or the epilepsy of the person they cared for. And 75% said they would like to see more research into the impact of climate change on the condition and what could be done to address it. Thanks to the Epilepsy Society for sharing these survey results. [To read the full report click here](https://epilepsysociety.org.uk/news/seizures-and-hot-summers). Don’t miss tomorrow’s story in the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay). [PARTICIPATE IN THE JUNE EPILEPSY BLOG RELAY ](https://forms.gle/zAcBEQk8xTDthbBs7) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Apr 22 EBR Posts, Epilepsy Blog Relay, Epilepsy Stories --- ### [Epilepsy Blog Relay: How the First Lady can influence disease stigma](https://livingwellwithepilepsy.com/epilepsy-blog-relay/first-lady-can-influence-disease-stigma.html) **Published:** April 22, 2022 **Author:** Jessica K. Smith **Excerpt:** As I began digging deeper into the history of disease stigma, I learned more about how the first lady has impacted stigma in a variety of disease states. **Content:** ![Viola Davis](https://livingwellwithepilepsy.com/wp-content/uploads/2022/04/viola_ntrsvw-1024x576.jpg "viola_ntrsvw – Living Well With Epilepsy")I recently started watching “The First Lady” featuring Viola Davis as Michelle Obama, and Michelle Pfeiffer, who takes on the role of Betty Ford, and Gillian Anderson, who plays Eleanor Roosevelt. At the same time I began digging deeper into the history of disease stigma. I learned more about how the first lady has impacted stigma in a variety of disease states. This story is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay). #### Researching disease stigma As I fell deeper and deeper down this internet rabbit hole, I discovered that Betty Ford was influential in moving Breast Cancer Awareness forward as she shared her personal experience. Michelle Obama spoke out on behalf of veterans struggling with mental illness. And Barbara Bush was a champion for AIDS Awareness and gay rights during the height of the crisis. #### A First Lady with epilepsy What I didn’t realize in my decades of epilepsy advocacy was that Ida McKinley lived with epilepsy for 25 years before she became First Lady to President McKinley (1897-1901). According to a book on Eleanor Roosevelt by Blanche Wiesen Cook, “President McKinley took great care to accommodate her condition. In a break with tradition, he insisted that his wife be seated next to him at state dinners rather than at the other end of the table. Guests noted that whenever Mrs. McKinley was about to undergo a seizure, the President would gently place a napkin or handkerchief over her face to conceal her contorted features. When it passed, he would remove it and resume whatever he was doing as if nothing had happened.” #### Epilepsy is everywhere Though Ida McKinley did not have the opportunity to become a champion for epilepsy. By her mere presence in the White House she shows us that epilepsy should never be the reason to limit our dreams and opportunities. Don’t miss tomorrow’s story in the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay). [PARTICIPATE IN THE JUNE EPILEPSY BLOG RELAY ](https://forms.gle/zAcBEQk8xTDthbBs7) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Apr 22 EBR Posts, Epilepsy Blog Relay, Stigma **Tags:** Stigma --- ### [Epilepsy Blog Relay: On Rescue Medications for Epilepsy](https://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-on-rescue-medications-for-epilepsy.html) **Published:** April 17, 2022 **Author:** Jessica K. Smith **Excerpt:** Rescue medications for seizures and epilepsy have been on my mind a bit recently. Not because I've had seizures but because there's been a few changes in my life that put me more at risk for seizures. **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/04/pexels-klaus-nielsen-6303537-1024x718.jpg "pexels-klaus-nielsen-6303537 – Living Well With Epilepsy")Rescue medications for seizures and epilepsy have been on my mind a bit recently. Not because I’ve had seizures but because there’s been a few changes in my life that put me more at risk for seizures. I also know that there are more options in the market for rescue medications. Yet my doctor has not had a single conversation with me regarding rescue medications. This story is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay). #### How is a rescue medication defined? According to the Epilepsy Foundation,”As needed” medicines or “r[escue treatments](https://livingwellwithepilepsy.com/2020/ig-live/live-with-craig-chambliss-discussing-the-importance-of-rescue-medications.html)” are identified as follows: - The ideal rescue medicine (1) is easy to use, (2) works quickly, (3) is safe with little to no side effects, and (4) works well. - The goal is to stop seizures quickly to prevent emergency situations. Hopefully this will prevent you from needing an emergency room. However, rescue medicines do NOT take the place of emergency medical care. If a true medical emergency happens, get emergency medical help right away. - If medications are prescribed as rescue treatments, they do NOT take the place of daily seizure medications. Most people who have epilepsy are prescribed other medications that they take on a regular basis. - People who have certain implanted devices for the treatment of epilepsy (such as a vagus nerve stimulator) can use a magnet to swipe over the device generator at the time of the seizure. This is also a form of rescue treatment. #### What rescue medications are available or in use? - Rectal Diazepam – most commonly prescribed as a rescue medication for children. Requires taking the patient’s pants off during a seizure to administer. - Ativan – oral sedative - Valtoco – Nasal Diazepam - Nayazilam – Midazolam - Libervant – Buccal Diazepam #### Why do I care about rescue meds? Well my seizures have been controlled for 20+ years, which is great, but now I have cancer and over the past few months both my parents passed away. I’m lucky, my seizures have stayed under control. But this equals a ton of stress on my body and mind. All of which could have resulted in a relapse in my seizures. In fact when I reached out to my neurologist about my cancer and the fact that I was about to start chemo, there was little urgency to get me in to see someone. And certainly no talk of rescue medications. Thankfully I have not needed them but I know that not everyone is that lucky. #### Take our Survey Take a minute to complete the 2022 Epilepsy Stigma survey. We did this in 2019 and I’m curious how attitudes have changed (if at all). [Take the 2022 Epilepsy Stigma Survey ](https://www.surveymonkey.com/r/PP82Q6H) Hope you take the survey. Don’t miss tomorrow’s story in the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay). ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Apr 22 EBR Posts, Epilepsy Blog Relay, Treatments **Tags:** rescue medications --- ### [Epilepsy Blog Relay: On Epilepsy and Stigma](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-and-stigma.html) **Published:** April 16, 2022 **Author:** Jessica K. Smith **Excerpt:** Okay so I’ll be honest the topic of epilepsy and stigma is a bit of a bugaboo of mine. But I promise to spare you the soapbox today and make it interactive. **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/04/pexels-tirachard-kumtanom-450056-1024x683.jpg "pexels-tirachard-kumtanom-450056 – Living Well With Epilepsy")Okay so I’ll be honest the topic of epilepsy and stigma is a bit of a bugaboo of mine. (bugagoo: an object of intense frustration, often taken out of proportion) If you get me talking about it in person you will be sure to regret the time I will dedicate to the topic. But I promise to spare you the soapbox today. I’m going to break it down and maybe make this a [little interactive](https://www.surveymonkey.com/r/PP82Q6H). This story is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay). #### Where does epilepsy stigma come from? I mean, the stigma has been around as long as the disease. If only people had been working on solutions that long. (sorry, sorry, there I go again.) [The Hammurabi code, dated 1780 B.C.,dictated that the person with epilepsy could not marry,](https://onlinelibrary.wiley.com/doi/pdf/10.1046/j.1528-1157.44.s.6.2.x) or testify in court, and the purchase contract of a slave was considered void if the slave suffered an epileptic seizure within the first three months of purchase. [In 400 B.C., Hippocrates wrote,](https://onlinelibrary.wiley.com/doi/pdf/10.1046/j.1528-1157.44.s.6.2.x) “The popular superstition, the magicians, the wizards and charlatans, who named the disease sacred, are being attacked. The alleged divine character is only a shelter for ignorance and fraudulent practices. The assumption of the gods being its cause reveals those people as fundamentally impious, for the gods do not make men’s bodies unclean, as the magicians would have them believe” . Epilepsy is no more divine than other diseases.” On July 14, 1933, the Nazi government instituted the [“Law for the Prevention of Progeny with Hereditary Diseases.”](https://www.ushmm.org/collections/bibliography/people-with-disabilities) This law, one of the first steps taken by the Nazis toward their goal of creating an Aryan “master race,” called for the sterilization of all persons who suffered from diseases considered hereditary, such as mental illness, learning disabilities, physical deformity, **epilepsy,** blindness, deafness, and severe alcoholism. #### Epilepsy stigma mid to late century In the United States, for instance, people with epilepsy were forbidden to marry in 17 states, until 1956. The last state to repeal this law did so only in 1980. I was 8 at the time and had already had several febrile seizures. It would be 4 more years until I was diagnosed. In 1956, 18 states provided for the sterilization of people with epilepsy on eugenic grounds. In the United Kingdom, a law prohibiting people with epilepsy from marrying was repealed in 1970. In some parts of the world, epilepsy is still commonly viewed as a reason for annulling marriages or simply prohibiting them. Thankfully, my husband did not contest our marriage. He continues to put up with me despite my messy behaviors and my epilepsy. #### Epilepsy stigma and employment Unemployment and [underemployment](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/disability-in-the-workplace.html) among persons with epilepsy still exists worldwide. In the United States, the first law to prohibit discrimination against people with physical disabilities was passed in 1973. However, this law had a limited scope, and it was not until 1990 that the passage of the [Americans with Disabilities Act](https://livingwellwithepilepsy.com/2018/aboutepilepsy/americans-with-disabilities-act-epilepsy.html) provided a more uniform remedy to persistent discrimination. It is important to note that many people are still fired or not hired due to fear about epilepsy and seizures. #### How epilepsy stigma compares Epilepsy today is where AIDS and Cancer was in the mid to late 80’s. The only treatments available treat the symptoms; nothing really resembling a cure. Doctors are still hesitant to talk about rescue medications and SUDEP despite the statistics. And those newly diagnosed stumble around in the dark for years until they find the confidence within themselves to reach out for support. (mmm, you can sense my frustration there a bit, huh?) In the 90’s I worked for an AIDS organization that raised money from the cable industry and fed it into direct service organizations in NYC like God’s Love We Deliver (food delivery for the homebound). I remember photocopying the Dr. Ho as Time Man of the Year cover article and in my next job running subway ads for an AIDS clinic in downtown Manhattan. It never occurred to me these experiences would tie into my work in epilepsy advocacy. #### Now for the interactive part Take a minute to complete the 2022 Epilepsy Stigma survey. We did this in 2019 and I’m curious how attitudes have changed (if at all). [Take the 2022 Epilepsy Stigma Survey ](https://www.surveymonkey.com/r/PP82Q6H) Hope you take the survey. Don’t miss tomorrow’s story in the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay). ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** About Epilepsy, Apr 22 EBR Posts, Epilepsy Blog Relay, Epilepsy Stories, Stigma **Tags:** epilepsy and stigma, epilepsy stigma, Stigma --- ### [Epilepsy Blog Relay: On the importance of questioning side effects](https://livingwellwithepilepsy.com/epilepsy-blog-relay/questioning-side-effects.html) **Published:** April 15, 2022 **Author:** Jennifer Lounsbury **Excerpt:** I now know I need to question all the potential side effects a medication causes, even the rare ones. **Content:** #### ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/04/Screen-Shot-2022-04-14-at-7.53.08-PM-1024x727.png "Screen Shot 2022-04-14 at 7.53.08 PM – Living Well With Epilepsy")Jenny’s Story I will admit, after more than 24 hours of labor, no sleep, and traumatic birth, when I was awoken to be told that my daughter had a few seizures, I never thought that this would be a life-long battle. A life including not only doctors and procedures, but dealing with the monster that is epilepsy and all the things that come with it. This story is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay). #### 20 Days in the NICU We left the hospital after 20 long days on 5 different medications, two of which were for her seizures. As a newborn, there were no noticeable effects. Just Colleen seemingly thriving, despite all the obstacles thrown her way. As she got older, her epilepsy seemed to change; no longer “silent seizures,” but the dreaded falls, hitting her face, bruises, and seemingly little we could do to change the circumstances. While it’s incredibly hard to say which medical diagnosis affects Colleen in what way, there was a point where her seizures were affecting so many aspects of her life. And I couldn’t have known. No one knew what to expect. #### Questioning side effects I had to deal with things as they came up: more wheelchair use because she just didn’t have the strength. Padding everything and everything. Holding her head, just in case she had a seizure while taking a bath. The fear took an emotional toll. Not to mention the physical scars of that period. There is a scar just below Colleen’s eye from falling onto one of her toys, which I thought was going to need stitches. That’s not even to begin saying what [side effects](https://livingwellwithepilepsy.com/2021/personal-epilepsy-stories/living-with-side-effects.html) her medication causes. Some made her tired all the time. One causes six months of an incredibly frustrated and exhausted child who would constantly bite herself out of frustration. It almost felt like the medications were worse than the seizures themselves. The worst yet was the medication that I had no idea was causing a huge coke-can sizes cyst on her pancreas. At that point, and after probably more than seven different medications, I was over what they were doing to my daughter. #### On thriving This may sound all doom and gloom, but thankfully, she is only on one medication now, and completely thriving. I now know I need to question all the potential side effects, even the rare ones. It would have prevented years of suffering that I knew nothing about. This is a hard road. And I know it may seem like nothing will ever work, but please keep fighting. Keep asking questions! ![author avatar](https://secure.gravatar.com/avatar/2d7fe6c0eded69888607fe806fbe9bc4b4f814de382f989b182dab6125aed61c?s=300&d=mm&r=g) Jennifer Lounsbury CP/Epilepsy Advocate. Photographer and designer. “Courage, dear heart.” [See Full Bio](https://livingwellwithepilepsy.com/author/jennylouns) [ ](https://livingwellwithepilepsy.com/author/jennylouns) **Categories:** About Epilepsy, Apr 22 EBR Posts, Epilepsy Blog Relay, Side Effects, Treatments **Tags:** anticonvulsant side effects, side effects --- ### [Epilepsy Blog Relay: How is epilepsy diagnosed?](https://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-how-is-epilepsy-diagnosed.html) **Published:** April 9, 2022 **Author:** Jessica K. Smith **Excerpt:** The process of getting an epilepsy diagnosis can be slow. So dealing with this process requires patience, but here are a few things to expect. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/04/pexels-mart-production-7089286-1024x683.jpg "pexels-mart-production-7089286 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2022/04/pexels-mart-production-7089286-scaled.jpg)When epilepsy symptoms such as seizures or lost time emerge, frustration is natural. I’m sorry to say the process of getting an epilepsy diagnosis can be excruciatingly slow. So dealing with this frustration requires patience, but ruling out other conditions is a necessary part of the diagnosis process. This story is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay). The testing you may undergo includes the following: #### Neurological Exam A complete neurological exam will usually be given to check brain and nerve functioning, as well as diagnose which part of the brain is being affected. Next, the functioning of senses, muscles, reflexes and coordination, as well as cognitive functions will be tested. These will provide a base level in the occasion that medicine is prescribed, to check that the dosage is appropriate. #### Electroencephalogram (EEG) An EEG not considered a diagnostic tool or a biomarker but it is often used by clinicians to support a diagnosis of epilepsy. An EEG will measure abnormal electrical activity in the brain. This test takes about 90 minutes, with brain activity being measured for about a half hour. Since this is such a short period of time and often does not capture seizure activity, the doctor may ask the patient to stay in the hospital facility. By tracking brain activity over a longer period of time, up to several days, there is a higher likelihood the team will capture some seizure activity. In addition to monitoring brain activity, this test often includes monitoring physical movements and behavior with a video camera. #### Positron Emission Tomography (PET) A PET scan may be taken to help identify the area of the brain that is causing the seizures. This test begins with a small injection of a radioactive ‘tracer’, which sounds out positrons that enables an image to be formed and helps detect the problematic area. #### Magnetic Resonance Imaging (MRI) An MRI scan may be taken to assist the neurologist in providing treatment. This test lasts about a half hour, and makes a very loud and distinctive sound. You will also be asked to remain still in a fairly confined space. It helps to come prepared with earplugs and to wear comfortable clothing. Feel free to check out our other articles on types of seizures, finding a neurologist and more. Don’t miss tomorrow’s story in the [Epilepsy Blog Relay™.](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** About Epilepsy, Apr 22 EBR Posts, Epilepsy Blog Relay --- ### [Epilepsy Blog Relay: Does having one seizure mean you have epilepsy?](https://livingwellwithepilepsy.com/epilepsy-blog-relay/does-seizure-mean-epilepsy.html) **Published:** April 7, 2022 **Author:** Jessica K. Smith **Excerpt:** Does having a seizure have to mean you have epilepsy? Learn more about how the ILAE and doctors define epilepsy. **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/04/pexels-cottonbro-4881619-683x1024.jpg "pexels-cottonbro-4881619 – Living Well With Epilepsy")I’ve been living with epilepsy for decades. And Living Well With Epilepsy has been around since 2009. So every once in a while I need to remind myself that people are newly diagnosed every day, and not everyone is as familiar with epilepsy. I thought it was worth taking a moment to revisit a few epilepsy basics for anyone who might be newly diagnosed or a loved ones newly initiated into the world of epilepsy. This story is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay). ### Does having a seizure mean you have epilepsy? Having a seizure does not necessarily mean that a person has epilepsy. According to the ILAE’s report revising the clinical definition of epilepsy, which was published in 2014: [Epilepsy](https://livingwellwithepilepsy.com/epilepsy) is a disease of the brain defined by **ANY** of the following conditions - At least two unprovoked (or reflex) seizures occurring less than 24 hours apart - One unprovoked (or reflex) seizure and a probability of further seizures similar to the general recurrence risk (at least 60%) after two unprovoked seizures, occurring over the next 10 years - Diagnosis of an epilepsy syndrome Epilepsy is considered to be resolved for individuals who had an age-dependent epilepsy syndrome but are now past the applicable age or those who have remained seizure-free for the last 10 years, with no seizure medicines for the last 5 years [Read the full ILAE Report ](https://www.ilae.org/files/ilaeGuideline/Definition2014.pdf) ### What are the symptoms? Symptoms can vary greatly from simple staring spells to violent shaking and are associated with different types of seizures. The types of seizures people experience are dependent on the part of the brain affected and the inciting cause of epilepsy. Typically, the type of seizure is similar to the previous seizure experienced. However, it is true that seizures can also evolve, meaning they can grow from affecting one portion of the brain to affecting the whole brain. Some people report experiencing [“auras”](https://livingwellwithepilepsy.com/2016/aboutus-lwwe/emilys-perspective/emilys-perspective-auras.html) prior to each seizure and some may feel a tingling sensation, undergo emotional changes, or smell some absent odors. ### New to Epilepsy If you are new to epilepsy and looking for some basic information, I hope you found this helpful. Don’t miss tomorrow’s story in the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay). ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** About Epilepsy, Apr 22 EBR Posts, Epilepsy Blog Relay --- ### [Epilepsy Blog Relay: Pushing the limits of my epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/pushing-the-limits-of-epilepsy.html) **Published:** April 6, 2022 **Author:** Jessica K. Smith **Excerpt:** A few years ago, my family took a vacation that was not only relaxing, but gave me the chance to push the limits of my epilepsy in ways that surprised me. **Content:** ![Horses near Hunter Mountain Photo Credit: Jessica Keenan Smith](https://livingwellwithepilepsy.com/wp-content/uploads/2015/08/IMG_5026-1024x765.jpg "horses near hunter mountain – Living Well With Epilepsy")A few years ago, my family took a vacation at [Hunter Mountain](https://www.huntermtn.com/) thanks to the generosity of some very good friends. The trip was not only relaxing, but it gave me the chance to push the limits of my epilepsy in ways that surprised me. This story is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay). #### Perfect opportunity To be honest, I’m not nearly as adventurous as some people you will read about on Living Well With Epilepsy. But this time I couldn’t pass up the opportunity because there are some things I don’t get to do very often, such as a hike to the top of a mountain, go horseback riding, relaxing in a jacuzzi, and go tubing on rapids. This vacation was my chance to test those limits. #### Pushing the limits The trip was delightful until we came to the tubing portion. Before we even got going, the staff asked if anyone had a medical condition, and my husband mentioned that we have a person with [epilepsy](https://livingwellwithepilepsy.com/epilepsy) in our group. Now, my husband and I have been married for 20 years and we have known each other since 1990. He knows my limitations, and he is a paramedic. I would never want to put him in a position to have to treat me (in a river, no less), but I have no doubt he could handle it. When the staff said, a person with epilepsy could not tube the rapids “[because the shock of the cold water could cause a seizure](https://livingwellwithepilepsy.com/2015/aboutus-lwwe/emilys-perspective/emilys-perspective-facts-and-myths-about-epilepsy.html).” My husband and I responded forcefully in concert, “That’s not a thing.” The rest of our group suppressed their chuckles as best they could. #### Another epilepsy myth busted I get it—the staff wanted to remove any responsibility from the company. So, I dutifully signed every bit of paper they wanted me to, releasing them from any liability. Later, as we were floating down the river, my husband yelled out, “how are you doing.” I responded, “no seizures yet,” in my smart-ass tone. Our group had a delightful day tubing, and I remained seizure-free as expected. Don’t miss tomorrow’s story in the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay). ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Apr 22 EBR Posts, Epilepsy Blog Relay, Epilepsy Stories --- ### [Epilepsy Blog Relay: Ken’s Epilepsy Journey](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-blog-relay-kens-epilepsy-journey.html) **Published:** April 4, 2022 **Author:** Guest Contributor **Excerpt:** With a traumatic childhood and multiple disabilities, Ken still fights for a better life and to help those around him. **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/04/pexels-mikhail-nilov-7929267-300x200.jpg "pexels-mikhail-nilov-7929267 – Living Well With Epilepsy")With a traumatic childhood and multiple disabilities, Ken still fights for a better life and to help those around him. This story is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay). #### Ken’s Story Because of my upbringing, my epilepsy went untreated for many years. I was often told I was “doing it for attention,” after a grand mal seizure. I was continuously misdiagnosed things like bipolar disorder, ADHD, and ADD and was prescribed medications that didn’t help my situation. It felt like no one wanted to take the time to help or listen to me. The seizures did go away for a few years, so I thought I outgrew them. But then my epilepsy came back when I was in college. #### Needing Multiple Brain Surgeries Once I was finally diagnosed, my doctors performed two [brain surgeries](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/brain-surgery-for-epilepsy.html) in an effort to manage my seizures. I will undergo a third one soon. My first surgery was a temporal lobectomy on my left side, which affected my memory, speech, and spelling. I went seizure-free for six months, but then my seizures came back. Then the only surgery I could get was having the [RNS Neuropace](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/living-with-vns-and-rns.html) put in. I went seizure-free for five months, but then they came back again and it appears my seizures now occur in the frontal lobe, so now I’m preparing for another surgery. I feel like people don’t understand me since my temporal lobectomy surgery. My brain is not the same, so I’m not good at explaining things anymore, and my short-term memory is a struggle. I use to be a pro at cooking, typing, and fixing electronics like computers, smartphones, and TVs. I could speak Spanish and German, but I can’t as well anymore. #### The Challenges of Daily Living My seizures are potentially a result from physical abuse I experienced as a child. I started having seizures when was one month old and was then abandoned at 7 years old. When I was 10 years old, my adoptive dad tried to get me help for my seizures. Because of everything I went through as a child, I now have PTSD and BPD (Borderline Personality Disorder) and seizures. I also have heart issues from my many seizures. I don’t get auras, so my seizures just happen. I have 2 to 3 [grand mal seizures](https://livingwellwithepilepsy.com/2013/personal-epilepsy-stories/sarahs-story-grand-mal-seizures.html) a day and about 8 [complex partial seizures](https://livingwellwithepilepsy.com/2013/personal-epilepsy-stories/complex-partial-and-simple-partial-story.html) each week. My back is severely damaged from the constant seizures and as a result, I’ll need spinal fusion surgery, and I will need to relearn how to use my back. I will have part of my back removed and the nerves in it and in place of them they will drill rods, needles, and screws in my back. My heart issues and the return of seizures deeply affects my mental health. I cry and sometimes feel suicidal. My PTSD gets worse after a nocturnal seizure. I went to a culinary arts school for five years, and I also love computer engineering, like fixing electronics like TVs, phones, computers, and tablets. But because of my seizures, I can hardly type anymore or write things because I constantly shake. I’m limited with support and friends since losing people due to not understanding my health problems. #### Continuing On Regardless how much my health issues limit me, I still manage to not let my epilepsy run my life. People from the [Epilepsy Foundation](https://www.epilepsy.com/) have encouraged me, saying they are inspired by my resiliency and my compassion. My hope is that if others read my story, it would better help people understand me and my health problems. I still write poems and music, and also sing. I still do what I can for others, like fix their computers, TVs, phones, and game systems. And I also clean for people. That stuff is my happiness and my moments to help me know I matter to some people and that I do have a purpose. My doctors have helped give me hope in my future. They told me I’m a very strong and gifted person with an absolutely amazing singing voice and have a gift for writing poems, playing the guitar and flute. They assured me that they all will get to the bottom of my [Ehlers-Danlos Syndrome](https://www.ehlers-danlos.com/eds-types/) and my ongoing seizures. #### Finding and Creating Epilepsy Community With everything I have gone through in my life and still going through, it’s been my goal to try and help others. I want to do what I can to help make people [seizure free](https://livingwellwithepilepsy.com/2021/personal-epilepsy-stories/my-continued-journey-toward-seizure-freedom.html) and make a difference in peoples lives. I refuse to let people with epilepsy go through what I did when I was a child. I hope this helps everyone understand me and better get to know me. I’ve been told that my story has inspired and touched a lot of lives. Thank you so much for taking the time to read my epilepsy journey story. Don’t miss tomorrow’s story in the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay). ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Apr 22 EBR Posts, Epilepsy Blog Relay, Epilepsy Stories, Grand Mal / Tonic Clonic, Stigma **Tags:** brain surgery, epilepsy, Epilepsy Blog Relay, mental health, multiple chronic conditions, multiple disabilities, multiple illnesses, seizures --- ### [Epilepsy Blog Relay: Discovering My Epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-blog-relay-discovering-my-epilepsy.html) **Published:** April 2, 2022 **Author:** Guest Contributor **Excerpt:** Things are definitely still bumpy and new to me but I have found that the more educated I get and the more I indulge in the epilepsy community the better and more stable I feel. I have my own YouTube channel that until now didn't feature much about my epilepsy but I’m not afraid to be a voice for others I have a passion to inspire! I know I looked and looked for youtube videos like the ones I make and am going to make for people just like me! **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/10/e8046bc0-c4bd-4469-91d4-f0207a15394a-200x300.jpeg "e8046bc0-c4bd-4469-91d4-f0207a15394a – Living Well With Epilepsy")Things are definitely still bumpy and new to me, but I have found that the more educated I get and the more I explore the epilepsy community the better and more stable I feel. I have my own [YouTube channel](https://www.youtube.com/channel/UCYGhDpu1BLZWIdX0QIePgGw) that until now didn’t feature much about my epilepsy but I’m not afraid to be a voice for others I have a passion to inspire! This story is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay). #### Allison’s Story When I was 18 no one in my family had any trace of epilepsy including me, or so I thought. But that’s when I started having absence seizures during the day. My first absence seizure happened while on a family hike, the Mt Lassen Peak trail. I remember being a little ahead of everyone, then sitting down on a rock to rest and then all a sudden I was hiking again and everything was a little blurry. After it happened I remember going back-and-forth with my mom over whether or not we should go home. Mom argued that we should go home and obviously she was right. My family recalls when they got to me, I just kept asking “what are we doing, why are we here?” Yet the hike was my idea! Most of the family thought I was joking, but somehow my mom just knew something was not right. After 2 more absence seizures, I had a grand mal while sleeping. I happened to be sharing a bed on a camping trip with my little sister. Sadly the experience has deeply traumatized her and I worry about my effect on everybody. Then we started seeing the doctor to find out the cause. After the usual tests, which resulted in no cause, we decided to start me on seizure medication. Thankfully the meds stopped the seizures but I began sleepwalking and had other side effects. Finally after months and months went by we decided my neurologist wasn’t passionate about helping me. So we found a new neurologists in a bigger city 3 hours away. I did a week long EEG in a hospital. I was finally diagnosed with frontal lobe Nocturnal Epilepsy. Everything changed we started finding medications that worked really well for now at least! Don’t miss tomorrow’s story in the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay). ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Apr 22 EBR Posts, Epilepsy Blog Relay, Epilepsy Stories --- ### [Epilepsy Blog Relay: Handwritten note launches one family into the world of special needs](https://livingwellwithepilepsy.com/epilepsy-stories/handwritten-note-launches-family-into-the-world-of-special-needs.html) **Published:** April 3, 2022 **Author:** Rachel Ablondi **Excerpt:** In searching through my son's medical files I found a handwritten note written years ago. The note included tips for finding services our special needs son. **Content:** ![handwritten note](https://livingwellwithepilepsy.com/wp-content/uploads/2022/04/IMG_4782-300x225.jpeg "handwritten note – Living Well With Epilepsy")I had been searching through my son’s medical files and there it was, a slip of paper measuring 3 inches by 4 inches with handwritten names, phone numbers and tips on what I should ask for when calling the numbers listed. The piece of paper noted to ask about, “PT/OT/Speech for children diagnosed with special needs, ask about vision, braces and orthotics.” This story is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay). #### A handwritten note At first I was surprised that I found this slip of paper out of the boxes and boxes of accumulated paperwork after all this time. I then laughed a little because in today’s world this important slip of paper would never be just scratched and handed to me in the casual way I received it. What gets me the most though is how at the time of receiving this note I had no idea what was to come. When that paper was handed to me back then, that was a defining moment in my life. That moment in my life would start me in a direction where I would be challenged and changed in ways I never saw coming. #### A perfect baby boy ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/04/IMG_4784-225x300.jpeg "IMG_4784 – Living Well With Epilepsy")The real moment my life was turned upside down was the day after my son Andrew was born. After a very long labor, I finally got to meet him. He was two weeks early, beaten up from his entrance into the world with a bruised and swollen face, but to me he was just perfect. I was a first time mom more than ready to get to know her newborn son. I was just starting to embrace that role when our nurses noticed Andrew had turned blue. He was rushed off to the NICU for what would be a fourteen day stay. A fourteen day stay to only be told Andrew’s brain “had bleeding in multiple areas, and to take him home”. At discharge from the NICU the doctor suggested we return in four months for a follow up clinic to the hospital to check on Andrew’s development. It was at that follow up clinic the doctor suggested with this casual note that I should call to find services for Andrew as he was already showing signs of a delay in his development. This handwritten paper full of jotted down notes was all the direction I received to get the help I needed for my son. At this point, I wasn’t at all aware of the extent of what Andrew would be facing as he grew. This simple note was my actual first leap into the intimidating world of raising a child who came into this world with a damaged brain. ### *“I have found the overwhelming joy that there is in being a mom”* *– Rachel* #### A different life than envisioned ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/04/IMG_4763-225x300.jpeg "IMG_4763 – Living Well With Epilepsy")With the doctor’s direction, and my persistence with the phone calls, the note did lead to Andrew receiving services in all areas. Our home would soon become a revolving door for a host of therapists that would work their hardest to guide Andrew’s development. We would visit regularly with doctors from a variety of specialties and hospitals who would ultimately diagnose Andrew with Cerebral Palsy, Cortical Visual Impairment, and two rare forms of epilepsy – Infantile Spasms and [Lennox Gastaut Syndrome](https://livingwellwithepilepsy.com/2021/personal-epilepsy-stories/lgs-and-appreciating-every-moment.html). Through each and every devastating diagnosis Andrew would remain a sweet, courageous, strong and resilient fighter. Now, with these diagnoses on top of being Andrew’s mom, I was a therapist, a pharmacist, a researcher, a dietitian, an advocate, a teacher, a far cry from my prior life of administrative work in an office. It hits me seeing this note how different life was back then. 23 years ago I was newly married, living in my first home, eagerly expecting my first child and ready to take on the world. I wanted to be that mom who arranged kids play dates, and fun kid themed outings, and to soak in all the miracles that a baby easily achieves without even a second thought. How very different our lives would wind up being. Now, so many years later Andrew lives with [multiple disabilities](https://livingwellwithepilepsy.com/2019/epilepsy-blog-relay/mar-19-ebr-posts/child-with-multiple-chronic-conditions.html). He cannot walk, or talk, see very well, and daily seizures take their toll. Andrew and his 22 years of growing and living with these disabilities have made a great impact on me, and on my entire family. I’ll be the first to admit, Andrew’s disabilities can be near impossible to come to terms with. When he is accepted for the person he is despite all that he struggles through, I have found the overwhelming joy that there is in being a mom, despite the complete change in direction our lives took. It would have been nice to have seen these comforting words back then on that 3×4 inch piece of paper as we were facing such a different direction. Don’t miss tomorrow’s story in the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay). ![author avatar](https://secure.gravatar.com/avatar/da6cebf0dbd4b87dca339a8df6f6effa078cf084deac23b9fe1f8571ff94606f?s=300&d=mm&r=g) Rachel Ablondi [See Full Bio](https://livingwellwithepilepsy.com/author/rachel-ablondi) [ ](https://livingwellwithepilepsy.com/author/rachel-ablondi) **Categories:** Apr 22 EBR Posts, Epilepsy Blog Relay, Epilepsy Stories **Tags:** Infantile Spasms, Lennox-Gastaut Syndrome, LGS, multiple disabilities, NICU --- ### [Epilepsy Blog Relay: Kindness shines through when you feel alone](https://livingwellwithepilepsy.com/epilepsy-stories/kindness-shines-through-when-you-feel-alone.html) **Published:** April 1, 2022 **Author:** Jessica K. Smith **Excerpt:** Even when epilepsy (or something else life throws at you) makes you feel alone, it can help to remember we are among people who love and care for us! **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2022/03/IMG_0983-225x300.jpg "Jess at chemo – Living Well With Epilepsy")I thought I would kick off this [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) with a story of my own. #### Recap of the past year and a half Some of you may know it has been a tough year (or few years). Not to be a bummer, and I do have a point, but let me catch you up on my situation. In 2021 my sisters and I sold my parent’s home on cape cod so we could place both mom and dad in a facility that could care for both of them. When I returned home my daughter was in a pretty serious accident and spent the next several months in the hospital and a physical rehabilitation center. That September we put my mom into memory care for advanced Alzheimers. Then in October, I was diagnosed with Stage 3C Ovarian Cancer. After I was able to get a few chemo treatments under my belt, I was back on Cape Cod with my sisters at the beginning of 2022. Dad had passed as a result of COVID Pneumonia and Mom was in hospice due to Sepsis, and advanced Alzheimer’s Disease. Within a month of Dad’s passing, Mom also passed. I share this not to get your pity, or be dramatic. (well, maybe a little dramatic) It’s more to highlight the kindness I’ve received from friends, loved ones and strangers throughout all of this. #### More Gratitude After reading that you might be surprised to hear my outlook on life has become brighter and more filled with gratitude than ever before. Also my desire to move forward in my work with the epilepsy community is stronger than ever. #### The Kindness of Strangers Since I was diagnosed with cancer, the one thing that shone through was the overwhelming kindness of friends, loved ones and even strangers. The examples run the gamut from small heartfelt cards to friends arranging every other night food deliveries. I even received an anonymous package from a woman I’ve never met who gifted me everything I would need to start chemotherapy. #### What can we learn from the Cancer Community? In the short time I have been living with epilepsy and advanced cancer, I have learned a lot from my experiences. When someone is diagnosed with cancer the community rallies around them. Whereas when someone is diagnosed with epilepsy the instinct is to hide it. Therefore how can the community rally if they don’t know? #### You can make a difference right now I’d like to start immediately and encourage two new initiatives despite the fact that I’m heading to have the big surgery on April 4. [JOIN OUR FACEBOOK GROUP ](https://www.facebook.com/groups/livingwellwithepilepsy) [NOMINATE SOMEONE FOR A YOU ARE NOT ALONE LETTER BUNDLE ](https://livingwellwithepilepsy.com/nominate-someone-for-a-you-are-not-alone-letter-bundle) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Apr 22 EBR Posts, Epilepsy Blog Relay, Epilepsy Stories --- ### [Study Shows Childhood-Onset Epilepsy Accelerates Brain Aging](https://livingwellwithepilepsy.com/epilepsy-news-and-research/epilepsy-research/study-shows-childhood-onset-epilepsy-accelerates-brain-aging.html) **Published:** December 3, 2021 **Author:** Jessica K. Smith **Excerpt:** According to a study presented at the 2021 American Epilepsy Society Annual Meeting, childhood-onset epilepsy accelerates brain aging by about 10 years. **Content:** [![Mom](https://livingwellwithepilepsy.com/wp-content/uploads/2017/06/IMG_5091-e1497438362933.jpg "IMG_5091 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2017/06/IMG_5091-e1497438362933.jpg)*Photo R to L: Jessica Keenan Smith (Epilepsy), Nina Keenan (Alzheimer’s Disease), Carolyn Smith* According to a study presented at the 2021 American Epilepsy Society Annual Meeting, [childhood-onset epilepsy accelerates brain aging](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5822199/) by about 10 years. The study compared the course of cognitive and brain aging in people in Finland with childhood-onset epilepsy and those without epilepsy who have been followed for approximately 55 years since the initiation of the study. Participants with epilepsy were about 5 years old on average when the study began and are now in their 60s. ### [More on the study in JAMA Neurology](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5822199/) #### No evidence of dementia yet [![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/11/1517277014806-150x150.jpg "1517277014806 – Living Well With Epilepsy")](https://www.utu.fi/en/people/matti-sillanpaa-0?sort_by=field_publication_date_value&page=25)*Matti Sillanpää MD PhD*Researchers conducted in-person clinical, neurological, cognitive and neuroimaging evaluations of both groups (those with epilepsy and those without) over a recent five-year interval (2012-2017). “None of the patients have exhibited dementia so far, but it does appear childhood-onset epilepsy may speed up aging processes, especially among those who continue to have active epilepsy from childhood into their 60s,” said [Matti Sillanpää, M.D., Ph.D., senior author of the study and senior research scientist at the University of Turku, Finland](https://www.utu.fi/en/people/matti-sillanpaa-0?sort_by=field_publication_date_value&page=25). “Compared to those without epilepsy, people with childhood-onset epilepsy had greater rates of cognitive changes and their brain scans showed more amyloid plaques, which may increase the risk of Alzheimer’s disease.” #### How will this affect me? The signs of brain aging were more advanced in people with focal (affecting one side of the brain) vs. generalized (affecting both sides of the brain) epilepsy, in those who had active epilepsy, meaning their epilepsy wasn’t well-controlled, and in those with a genetic risk marker [(APOE 4)](https://www.nia.nih.gov/news/study-reveals-how-apoe4-gene-may-increase-risk-dementia). The researchers compared 41 people with childhood-onset epilepsy to a control group of 46 people who did not have epilepsy, based on evaluations performed beginning in 2012 and then repeated in 2017. They used [PET scans](https://www.mayoclinic.org/tests-procedures/pet-scan/about/pac-20385078) to assess amyloid plaques in the brain, MRI exams to assess gray and white matter and conducted in-person neurological and cognitive evaluations. Because MRI and PET scans are performed in confined spaces, patients with claustrophobia did not have those tests. Of the childhood-onset epilepsy group, 32 had their epilepsy under control for 10 years or more (in remission) and nine had active epilepsy that has persisted for decades. In 2012, brain PET scans showed 22% of people with childhood-onset epilepsy had amyloid plaques vs. 7% of the control group. In 2017, 33% of people with childhood-onset epilepsy had amyloid plaques vs. 11% of the control group. There was no difference in the presence of amyloid plaques among those with active epilepsy compared to those whose epilepsy was in remission. Those whose epilepsy was in remission exhibited modest but detectable abnormalities. However, the majority of adverse changes were associated with those who have active (uncontrolled) epilepsy #### The Limitations of the Study According to the authors, there are some limitations in the study. First, their study did not allow for assessing the temporal course of [amyloid accumulation](https://www.nature.com/articles/s41467-017-01150-x). Second, the mean age of the participants was 56.0 years, and the prevalence of Alzheimer disease is low at this age.These two factors limit the ability of this study to accurately prove a link between childhood epilepsy and Alzheimer’s Disease. Also the sample (or patients who participated) was heterogeneous (similar) in terms of epilepsy syndromes and medications used, which limits the power to detect associations between individual epilepsy syndromes and/or their associated genetic mutations and amyloid accumulation. We also lacked detailed data about individual seizure types and number of seizures. However, all participants had uncomplicated epilepsy, which reduces the variety of causes. #### Comments on the study There does not seem to be great detail in the data with regard to how drug side effects or longevity on medication has played a role in adverse changes to brain function and memory. As such, more data is needed. [Learn About Participating in a Research Study ](https://clinicaltrials.gov/ct2/results?recrs=ab&cond=Epilepsy&term=&cntry=&state=&city=&dist=) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Research **Tags:** american epilepsy society, epilepsy, epilepsy and alzheimer's, jama neurology, longevity study --- ### [Prescription Assistance Programs can help with deductibles](https://livingwellwithepilepsy.com/epilepsy-blog-relay/prescription-assistance-programs-can-help-with-deductibles.html) **Published:** November 22, 2021 **Author:** Jessica K. Smith **Excerpt:** Here's some info on prescription assistance programs that can help with epilepsy medications. Now maybe we won't get kicked in the ass by that damn deductible this year. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/11/pexels-maitree-rimthong-1602726-scaled.jpg "pexels-maitree-rimthong-1602726 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2021/11/pexels-maitree-rimthong-1602726-scaled.jpg)The beginning of the year can be especially stressful for me financially. Not just because I’ve attended to many holiday parties and bought too many gifts, but because my health insurance deductible resets. It doesn’t seem to matter how savvy I am with my Flexible Spending Account or Health Savings Account. I still seem to get kicked in the ass by that damn deductible every year. I’m lucky to even have insurance. And I am lucky to be employed. Believe me, I am grateful. But I can’t imagine I’m the only one to get this kick in the butt each New Year’s Eve. So, I thought I would share some info on Prescription Assistance Programs that may help with paying less on your epilepsy medications. #### Prescription Assistance Programs Pharmaceutical companies and drug manufacturers very often have patient assistance programs. These are programs that will send you free or low cost medications. Sometimes they do this via a coupon, sometimes you need to request it monthly and sometimes it has to be done via your doctor. I’ll be honest it is a pain. But if it can save you thousands (and it can!!) then it is worth trying. In some cases it can help to call the company directly or to apply for their program online. When you do call or search online you want to look for information on Patient or Prescription Assistance Programs. [SK Life Science – **XCOPRI®** ](https://www.sklsinavigator.com/) [Eisai – **BANZEL****®**](https://www.rxhope.com/PAP/pdf/erxpae1816.pdf) [Zogenix – **FINTEPLA**](https://www.fintepla.com/financial-support/cost-and-copay/) [Neurelis – **VALTOCO®** ](https://www.myneurelis.com/) [UCB – ](https://www.ucb-usa.com/Patients/Financial-Assistance)[**BRIVIACT****®**](https://www.briviact.com/savings-card), **[CIMZIA®](https://www.cimzia.com/co-pay-program)**, [**NAYZILAM****®**](https://www.nayzilam.com/savings), **[VIMPAT®](https://www.vimpat.com/savings-support)** [Jazz Pharmaceuticals/Greenwich Biosciences – **EPIDIOLEX**](https://www.epidiolexhcp.com/getting-epidiolex/access-and-coverage) [Takeda – **CARBATROL®**, **VYVANSE®** ](https://www.takeda.com/en-us/what-we-do/patient-services/helpathand/) [Supernus – **OXTELLAR®**, **TROKENDI®**](https://www.supernus.com/resource-center) [AstraZeneca – **TOPAMAX®**](https://www.topamax.com/savings.html?&utm_source=google&utm_medium=cpc&utm_campaign=GO-USA-ENG-PS-Topamax-BC-PH-RN-DTC&utm_content=Topiramate&utm_term=topiramate&gclid=CjwKCAiAnO2MBhApEiwA8q0HYahzoqZd8tj_dZQ27BBLRBvgCMBfbVWQcPETsoA88gf7l43_ps9VKBoCcecQAvD_BwE&gclsrc=aw.ds) [RX Outreach – **KEPPRA**](https://rxoutreach.org/) #### If you don’t have insurance: If you don’t have private insurance, I encourage you to visit the website, [Needy Meds](https://www.needymeds.org). There is no income requirement or membership fee. You could see up to an 80% discount on your prescriptions, which may still be expensive but is certainly better than nothing. [VISIT NEEDY MEDS ](https://www.needymeds.org/questions-faqs) #### General Prescription Coupon Sites These general prescription coupon sites work by comparing prices and various pharmacies in your area. They also offer you the ability to download a coupon to save a percentage on the full price of the drug. This can save a bit especially at the beginning of the year when you are paying out of pocket for the drug. These sites are helpful whether or not you have insurance. Some of the coupons may have specific requirements so take a peek at the fine print on the actual coupon. [GoodRX](https://www.goodrx.com/) [WellRX](https://www.wellrx.com) #### For Any I Missed For other meds, (because we all have some other condition right) you can search these patient assistance programs by drug name or company name using the site [RxAssist](https://www.rxassist.org/patients). [VISIT RXASSIST.com ](https://www.rxassist.org/patients) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Blog Relay, Nov 21 EBR Posts, Resources **Tags:** BANZEL®, BRIVIACT®, CARBATROL®, CIMZIA®, epidiolex, FINTEPLA, GoodRx, NAYZILAM®, NeedyMeds, OXTELLAR®, Patient Assistance Program, Prescription Assistance, RxAssist, topamax, TROKENDI®, VALTOCO®, VIMPAT®, VYVANSE®, WellRx, xcopri --- ### [Emily's Perspective on Living Well With Epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/emilys-perspective-on-living-well-with-epilepsy.html) **Published:** November 10, 2021 **Author:** Emily Lawrence (Nee Donoghue) **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/11/emily-and-grace-2021-225x300.jpg "emily and grace 2021 – Living Well With Epilepsy") ## Making adjustments and finding gratitude Living well with epilepsy to me isn’t about being seizure free. It isn’t about wishing I could drive. It isn’t about wishing I didn’t have to take pills every day, and it isn’t about wishing I could be in a different job. Living well with epilepsy to me is [finding a job that is accommodating to my needs](https://livingwellwithepilepsy.com/2021/leilas-ideas/tips-for-starting-a-new-job-with-epilepsy.html). It is about being the parent to my little girl that I always dreamed of being. It is about having friends who make me feel safe because they are clued up on the latest [seizure first aid](https://livingwellwithepilepsy.com/2010/epilepsy-news/seizure-first-aid-what-would-you-do.html). It is about my family feeling at peace knowing I am okay at home with my little girl. ## Finding community Living well with epilepsy to me is about raising awareness of the condition; it is about being given so many opportunities to meet other amazing people living with epilepsy and living their life as best as they can. I have been a writer for [Living Well with Epilepsy](https://livingwellwithepilepsy.com/2020/epilepsy-blog-relay/jessica-smith-shares-her-epilepsy-journey.html) for nine whole years, and it has been the most amazing journey. I am so blessed to have shared my life with so many people over the years. I have also participated in the blog relays most years, and hearing other people’s stories and insights is wonderful, so I was excited to be able to participate this year. ## My journey with epilepsy I am a 27-year-old from Derby, England. I am a mum to 15-month-old, Grace, and I was diagnosed with epilepsy in 2006, just before starting secondary school. I had [absence seizures](https://livingwellwithepilepsy.com/2013/epilepsy-news/emilys-story-absence-seizures-part-1.html), which later turned into tonic clonic seizures and complex seizures. I remember being told my life would be different to what I had perhaps planned. What is different? I was only 10 years old. I hadn’t made any life plans, and I had no idea what I wanted to do, but instantly it was pushed onto me that my life would be “different.” Did this mean I would never work? Did this mean I couldn’t have children? I was so uneducated and it took months, maybe even years, to understand what different is. But I learned it really didn’t matter what I could or couldn’t do, all that mattered was that I was safe and happy. We had seizure alarms, and I had to change up what I wanted to study. At the time, I was devastated, I thought, “Is this my life now?” Numerous medication changes, complex seizure development, potential surgery. I left one of my favorite jobs because I was so worried about my seizures getting in the way. It was only when I started my new job that I thought to myself, “This doesn’t have to be it. Epilepsy doesn’t have to take control of my life.” We can’t cure epilepsy, and we can’t always control it either. Some people, like myself, have intractable epilepsy, sometimes known as drug resistant epilepsy. But that is OK. ## Limitations don’t define me Living with a long-term health condition or disability may mean you have to make adjustments to the way you live your life. Maintaining a healthy lifestyle and taking advantage of the available support will help you to live well and do the things you enjoy. There are things we are advised to not do, but that doesn’t stop you from finding new things and new passions. If it weren’t for epilepsy, I wouldn’t have achieved half the things that I have done. Having a medical condition doesn’t define me, but it has made me. In a good way. Having epilepsy made me a very insecure, withdrawn young person but as I got older, it made me bold, confident, educated, and adventurous. Because I wanted to be the person that I needed when I was diagnosed. ## Giving back and letting go I went on to write a children’s book to help young people understand tests that they would need to undergo for epilepsy diagnosis. I did a wing walk for charity to raise money for a specialized school for young people with neurological conditions. Something I have learned is to give myself permission to let go and accept my limitations. One key to better coping with a chronic condition is skipping some of the things you used to consider must-have’s—and being OK with it. We all only have 1,440 minutes in a day. I learned to accept that I cannot do it all, so I need to focus on what’s important and do that well. Living well with epilepsy to me was finding my purpose and accepting that I have epilepsy, but it does not have me. ![author avatar](https://secure.gravatar.com/avatar/5523d28ae8bbaedc9d082d51d29393ca490379cd31464b99ab3c7d50a49362ac?s=300&d=mm&r=g) Emily Lawrence (Nee Donoghue) 25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England. Emily's Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10. Based in UK. [See Full Bio](https://livingwellwithepilepsy.com/author/emilyd) [ ](https://livingwellwithepilepsy.com/author/emilyd) **Categories:** Emily's Perspective, Epilepsy Blog Relay, Epilepsy Stories, Nov 21 EBR Posts --- ### [Gina's Story: Navigating Temporal Lobe Epilepsy (TLE) from childhood to adulthood](https://livingwellwithepilepsy.com/epilepsy-stories/temporal-lobe-epilepsy-from-childhood-to-adulthood.html) **Published:** November 8, 2021 **Author:** Guest Contributor **Excerpt:** Gina was born with temporal lobe epilepsy (TLE). As a child, the doctors tried everything, but her seizures got worse. Now as an adult she's thriving! **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/11/IMG_20210316_111221630-225x300.jpg "IMG_20210316_111221630 – Living Well With Epilepsy")My name is Gina Moses, and I was born with [temporal lobe epilepsy](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/lily-on-living-with-temporal-lobe-epilepsy.html) (TLE). As a child, the doctors put me on every medication (except Dilantin), but my seizures continued to worsen. By age nine, I was in [status epilepticus](https://livingwellwithepilepsy.com/2021/personal-epilepsy-stories/my-continued-journey-toward-seizure-freedom.html) almost every day for hours. #### Finding balance The doctors decided to do [surgery](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/brain-tumor-and-epilepsy-life-after-surgery.html), and I was one of the first brain surgeries in 1999. They found a tumor pressing on the hypothalamus. The surgery significantly reduced my seizures. To this day, I still have focal seizures, especially when my [hormones](https://livingwellwithepilepsy.com/2011/epilepsy-news/womens-health-and-epilepsy.html) change. #### What is Temporal Lobe Epilepsy According to the Epilepsy Foundation, temporal lobe epilepsy or TLE is the most common form of [focal epilepsy](https://www.epilepsy.com/node/2002206). About 6 out of 10 people with focal epilepsy have temporal lobe epilepsy. Seizures in TLE start or involve in one or both temporal lobes in the brain. There are two types of TLE: - Mesial temporal lobe epilepsy (MTLE) involves the *medial* or internal structures of the temporal lobe. Seizures often begin in a structure of the brain called the hippocampus or surrounding area. MTLE accounts for almost 80% of all temporal lobe seizures. - Neocortical or lateral temporal lobe epilepsy involves the outer part of the temporal lobe. #### Driving and Epilepsy According to WebMD, there are 700,000 licensed drivers living with [epilepsy](https://www.webmd.com/epilepsy/default.htm). Each state has its own regulations, and they can vary greatly. You can visit the website of your state’s department of motor vehicles (DMV) to find out the requirements where you live. The Epilepsy Foundation also has a searchable database of state regulations on its website. However it is best to check this information against your state’s department of motor vehicles to ensure accuracy. Also, many other countries have varied rules and regulations with regard to driving while living with epilepsy. #### Thriving as an adult Now I’m on three medications: Banzel, Lyrica, and Onfi. They are the only medications I can take without side effects. I am able to drive, work as an admin in construction, and soon will have a commitment ceremony with my partner. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Nov 21 EBR Posts, Temporal Lobe Epilepsy **Tags:** driving and epilepsy, temporal lobe epilepsy, TLE --- ### [Danielle on living with epilepsy and cerebral palsy](https://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-and-cerebral-palsy.html) **Published:** November 2, 2021 **Author:** Guest Contributor **Excerpt:** I'm Danielle and I wanted to share a little about my experience living with epilepsy and cerebral palsy as well as some info on epilepsy and CP. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/10/image0.jpeg "image0 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2021/10/image0.jpeg)My name is Danielle! I’m 25 years old. I’m excited to share a little about living with epilepsy and cerebral palsy. I have been living with epilepsy for nine years and cerebral palsy my whole life. I live in New Hampshire, I love the mountains, and I’m currently an advocate for epilepsy and love being a voice for people with disabilities! #### [Read about Epilepsy and Cerebral Palsy from a Mom’s Perspective](https://livingwellwithepilepsy.com/author/jennylouns) #### What is epilepsy? Epilepsy is a chronic, noncommunicable disease of the brain with many possible causes. Causes may include illness, brain damage, or even abnormal brain development. However, according to the American Academy of Neurological Surgeons, [60-70% of people with epilepsy have no known cause](https://www.aans.org/en/Patients/Neurosurgical-Conditions-and-Treatments/Epilepsy). #### How common is epilepsy? [According to the CDC, 1.2% of the United States population is known to have active epilepsy.](https://www.cdc.gov/epilepsy/about/fast-facts.htm) This is about 3.9 million people with epilepsy in the United States. According to a [journal article published in Epilepsia](https://onlinelibrary.wiley.com/doi/full/10.1111/j.1528-1167.2009.02481.x), “Epilepsy is one of the most common neurologic conditions in the world. [This research team conducted a meta-analytic approach](https://onlinelibrary.wiley.com/doi/full/10.1111/j.1528-1167.2009.02481.x) to available data on active epilepsy cases and determined that globally a more accurate number \[than the one currently utilized by the WHO\] is 68 Million. This data has since been referenced in [JAMA Neurology, 2018.](https://jamanetwork.com/journals/jamaneurology/fullarticle/2666189) For more info on epilepsy, visit our [About Epilepsy Section](https://livingwellwithepilepsy.com/epilepsy) #### What is Cerebral Palsy According to the CDC, Cerebral palsy (CP) is a group of disorders that affect a person’s ability to move and maintain balance and posture. CP is the most common motor disability in childhood. *Cerebral* means having to do with the brain. *Palsy* means weakness or problems with using the muscles. CP is caused by abnormal brain development or damage to the developing brain that affects a person’s ability to control his or her muscles. The symptoms of CP vary from person to person. A person with severe CP might need to use special equipment to be able to walk, or might not be able to walk at all and might need lifelong care. A person with mild CP, on the other hand, might walk a little awkwardly, but might not need any special help. CP does not get worse over time, though the exact symptoms can change over a person’s lifetime. All people with CP have problems with movement and posture. Many also have related conditions such as: [intellectual disability](https://www.cdc.gov/ncbddd/developmentaldisabilities/facts-about-intellectual-disability.html); seizures; problems with [vision](https://www.cdc.gov/ncbddd/developmentaldisabilities/facts-about-vision-loss.html), [hearing](https://www.cdc.gov/ncbddd/hearingloss/index.html), or speech; changes in the spine (e.g. scoliosis); or joint problems (e.g. contractures). #### The relationship between epilepsy and cerebral palsy According to the Epilepsy Foundation, approximately 25% to 35% of all children with cerebral palsy have epilepsy. A much smaller proportion of those with epilepsy have cerebral palsy. Epilepsy and cerebral palsy are separate disorders, but both can result from the same abnormality of the brain. Epilepsy does not cause cerebral palsy. Cerebral palsy does not cause epilepsy. The two conditions simply coexist, and are differing signs of a brain abnormality or malfunction. #### From Danielle: Living well with epilepsy means fight to me. I have fought through epilepsy for the past almost ten years. It has been a roller coaster of emotions and struggle. In these ten years, I went from not walking and being wheelchair-bound to being able to walk on my own again. The fight isn’t over yet! ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Cerebral Palsy and Epilepsy, Epilepsy Blog Relay, Nov 21 EBR Posts --- ### [Meet Natalie: STEPS Toward Zero Champion](https://livingwellwithepilepsy.com/partner/sklifescience/steps-toward-zero-natalie.html) **Published:** August 29, 2021 **Author:** Jessica K. Smith **Excerpt:** STEPS Toward Zero is a movement developed by SK life science, featuring epilepsy advocate Natalie Beavers founder of Angels of Epilepsy. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/08/Natalie-Photo-2-CREDIT-TO-NATALIE-BEAVERS-300x295.png "Natalie Photo 2 CREDIT TO NATALIE BEAVERS – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2021/08/Natalie-Photo-2-CREDIT-TO-NATALIE-BEAVERS.png)Meet Natalie You may know Natalie Beavers as Founder of Angels of Epilepsy, an epilepsy nonprofit that was established to support and educate the epilepsy community. But Natalie is also a [STEPS Toward Zero champion](https://www.STEPSTowardZero.com?utm_source=https%3A%2F%2Flivingwellwithepilepsy.com&utm_medium=post&utm_campaign=stz&utm_id=lwwe) and a [WEGO Health 2018 Lifetime Achievement Award Winner.](https://www.wegohealth.com/2019/01/05/2018-top-10-lifetime-achievement-patient-leaders/) [STEPS TOWARD ZERO CAMPAIGN ](https://www.STEPSTowardZero.com?utm_source=https%3A%2F%2Flivingwellwithepilepsy.com&utm_medium=post&utm_campaign=stz&utm_id=lwwe) If you don’t know about Natalie and the great work she does, [Angels Of Epilepsy](https://angelsofepilepsy.org/), is based in Georgia. The organization supports, advocates, and provides educational information and resources for the epilepsy community. A proud mother of two sons, Natalie was diagnosed with epilepsy at the age of five. In the summer of 2006, Natalie had a seizure while driving — ultimately becoming one of the most pivotal moments of her entire life. Natalie founded Angels Of Epilepsy in 2008. Through her advocacy work, she reaches people with epilepsy across the country, helping provide them with necessary resources such as lodging and transportation when receiving medical care, as well as educational health seminars and workshops. [ANGELS OF EPILEPSY ](https://angelsofepilepsy.org/) #### What is STEPS Toward Zero We don’t have to imagine living with the constant fear of having a seizure and not knowing when it might occur — we live it everyday. Of course, this is the reality for not only the more than 30% of people with epilepsy who are still having seizures despite taking medication, but anyone who has been diagnosed. STEPS Toward Zero is a new movement that aims to inspire the entire epilepsy community to set their sights on one goal – zero seizures – and take steps toward it. Now, many of us in the epilepsy community agree that zero seizures may not be the ultimate goal for everyone. But for those who have this as a goal, STEPS Toward Zero, is a great campaign. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/08/STZ_Natalie_Quote-Card_8.9-TW.jpg "STZ_Natalie_Quote Card_8.9 TW – Living Well With Epilepsy")](https://www.STEPSTowardZero.com?utm_source=https%3A%2F%2Flivingwellwithepilepsy.com&utm_medium=post&utm_campaign=stz&utm_id=lwwe) #### Who developed STEPS Toward Zero The company behind STEPS Toward Zero, [SK life science](https://livingwellwithepilepsy.com/partners/sklifescience), is partnering with the Epilepsy Foundation and four community champions living with epilepsy – former NFL player and Hall of Fame inductee Alan Faneca, professional golfer Kenzie O’Connell, and advocates Jared Muscat and Natalie Beavers – to encourage people with epilepsy to learn about what is possible, revisit their treatment goals and access new resources available on [www.STEPSTowardZero.com](https://www.STEPSTowardZero.com?utm_source=https%3A%2F%2Flivingwellwithepilepsy.com&utm_medium=post&utm_campaign=stz&utm_id=lwwe). #### How does STEPS Toward Zero work As part of the STEPS Toward Zero Movement, [SK life science](https://livingwellwithepilepsy.com/partners/sklifescience) invites you, a member of the epilepsy community to join the conversation and share what zero seizures means to you by using #STEPSTowardZero on your favorite social media channel. **For every response, SK life science will donate $1 to the Epilepsy Foundation, up to $15,000**. [LEARN MORE ](https://www.STEPSTowardZero.com?utm_source=https%3A%2F%2Flivingwellwithepilepsy.com&utm_medium=post&utm_campaign=stz&utm_id=lwwe) [The STEPS Toward Zero movement](https://www.prnewswire.com/news-releases/sk-life-science-inc-launches-steps-toward-zero-movement-to-educate-inspire-and-activate-the-epilepsy-community-301345363.html) encourages people living with epilepsy to revisit their treatment goals and access resources available on [www.STEPSTowardZero.com](http://www.stepstowardzero.com/) including a doctor discussion guide, telehealth tip sheet and seizure journal, to prepare for conversations with their doctors about the possibility of zero seizures. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** SKLifeScience **Tags:** Angels of Epilepsy, Natalie Beavers, SK life science, STEPS Toward Zero --- ### [Delta Variant: It's time to stock up on a few more face masks](https://livingwellwithepilepsy.com/shop/face-mask-guide.html) **Published:** August 21, 2021 **Author:** Jessica K. Smith **Excerpt:** With the Delta variant and the rise in COVID-19 cases, is anyone else feeling like it's time to add a new set of face masks to the wardrobe? **Content:** With the Delta variant and the rise in COVID-19 cases, is anyone else feeling like it’s time to add a new set of face masks to the wardrobe? Variety in style, color, and design is one method I use to keep my mood up during these trying times. Not to mention, in my house masks have become the new thing my dryer eats, making them a hot commodity my family fights over when it’s time to leave the house. If you’re also on the hunt to spruce up your mask wardrobe and battling the dryer monster, I’ve pulled together some of my favorites. **Are Cloth Masks Effective?** Before we do a deep dive on mask fashion, it’s important to remember the efficacy of masks, particularly the cute ones. The [CDC recommends](https://www.cdc.gov/coronavirus/2019-ncov/prevent-getting-sick/about-face-coverings.html) having two or more layers of washable, breathable fabric that can completely covers the nose and mouth, fitting snugly against the sides of the face. [Clarisa Diaz recently published a piece in Quartz](https://qz.com/2042410/how-effective-masks-are-against-the-delta-variant/) on how different masks prevent against the Delta and Lambda Variants. She emphasizes the importance of layering, recommending a cloth mask over a disposable one. Diaz also reminds us that the CDC’s position is that, “Mask wearing by vaccinated people reduces the risk of breakthrough infections.” --- *Note: All products featured on LWWE are independently selected by our editors. However, when you buy something through our retail links, we may earn an affiliate commission.* --- #### [Best Face Masks to Get the Bang for Your Buck](https://bit.ly/2X3wWyN) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/08/cbf40dfa_9672-1024x1024.jpg "cbf40dfa_9672 – Living Well With Epilepsy")](https://bit.ly/2X3wWyN) #### Everlane The 100% Human Face Mask Five-Pack This 100% cotton mask is washable and super comfy. Everlane is also selling a 5-pack of masks for $10 right now! Of course the sale price might be temporary so be sure to check for yourself. **$10.00 (5-pack)** EVERLANE [BUY NOW ](https://bit.ly/2X3wWyN) #### [Best Face Masks with Fall Color Options](https://bit.ly/3yAyYEt)[![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/08/MD209_PP0706_d4-scaled-e1628446842438-1024x1024.jpg "MD209_PP0706_d4 – Living Well With Epilepsy")](https://bit.ly/3yAyYEt) #### Madewell Adjustable Face Masks These cotton masks (not 100%) come in a 3-pack in a bunch of different fall color combos. They are designed with comfort in mind and have secure adjustable elastic ear straps and a three-layered construction that includes a filter. **$14.50 (3-pack)** MADEWELL [BUY NOW ](https://bit.ly/3yAyYEt) #### [Best Face Masks for Getting Sweaty](https://bit.ly/3rZHmLo) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/08/cn19853185_2.jpg "cn19853185_2 – Living Well With Epilepsy")](https://bit.ly/3rZHmLo) #### Athleta Women’s Activate Face Mask This one is a comfortable TurboDry™ fabric designed for walking, yoga, or whatever activity gets you a little sweaty. It comes in a 2-pack and you can select from beautiful Athleta color combos. **$14.99 (2-pack)** ATHLETA [BUY NOW ](https://bit.ly/3rZHmLo) #### [Best Face Masks for Giving Back](http://shrsl.com/33xx5)![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/08/5000-Variety-5Pack2_480x.jpg "5000-Variety-5Pack2_480x – Living Well With Epilepsy")Face Masks Now “Masks For Good” If you want to make sure your mask is not only keeping you safe but also making an impact, try this one. They come in a 5-pack and you can pick from 4 different charities that you would like to donate a portion of the sale. **$39.95 (5-pack)** FACE MASKS NOW [BUY NOW ](http://shrsl.com/33xx5) #### [Best Face Masks for Showing Your Inner Warrior](https://tidd.ly/3fQwYAL) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/08/SheWarriorEcommerceMaskBlack-e1628718296333.jpg "SheWarriorEcommerceMaskBlack – Living Well With Epilepsy")](https://tidd.ly/3fQwYAL) #### She Warrior Journeyman Mask If you are looking to make a strong statement and have a positive impact on the environment then these masks check both boxes. They are made of 100% Recycled Polyester and will show the world you are a warrior. **$15.00** SHEWARRIOR [BUY NOW ](https://tidd.ly/3fQwYAL) #### [Best Face Masks for Raising Epilepsy Awareness](https://tidd.ly/3AutNXc) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/08/il_1588xN.2568121410_74jd-e1628719127562.jpg "il_1588xN.2568121410_74jd – Living Well With Epilepsy")](https://tidd.ly/3AutNXc) #### PetJos on Etsy Epilepsy Warrior Mask Well we just couldn’t do this article without including one epilepsy awareness mask! This purple ribbon face mask is a great choice considering Epilepsy Awareness month is coming up. **$4.28 + $17.12 shipping** PETJOS on ETSY [BUY NOW ](https://tidd.ly/3AutNXc) #### Your Turn Leave a comment below and let us know where you get your favorite masks! ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Shop --- ### [Sheri's Story: Learning to Live All Over with Refractory Epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/sheris-story-learning-live.html) **Published:** July 31, 2021 **Author:** Guest Contributor **Excerpt:** Sheri was diagnosed with refractory epilepsy in her late 20's. She keeps a positive attitude, but transportation can be difficult. **Content:** #### [![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/04/IMG_3050-1-e1491774567372-245x300.png "IMG_3050 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=15647)Sheri’s Story I was diagnosed with [refractory epilepsy](http://livingwellwithepilepsy.com/2017/blog-relay/epilepsy-blog-relay-david-on-raising-a-child-with-refractory-epilepsy.html) in my late 20’s, there was no known cause or reason. It came from nowhere. For about a month the strange auras (mostly in the shower), then telling my husband about the odd experience. We both chalked it up to long hours at work and feeling generally overtired. We monitored the auras (at the time we didn’t know that’s what they were). Finally one evening we were home watching a quiet movie and I was sitting on the floor, he on the couch behind me. I felt the aura, couldn’t speak, apparently seized, and when I awoke there was an ambulance at my home. A scary feeling. Flash forward 30 years and several hundred seizures later, I’ve tried every medication without success (hence the word Intractable). I now have a VNS or [Vagus Nerve Stimulator ](http://livingwellwithepilepsy.com/2016/blog-relay/chantal.html)implant and still seize. I was forced to leave behind a successful career and I can no longer drive. #### The Transportation Issue While I have an excellent outlook about the seizures themselves, ie: I am not afraid to venture out alone as this is just a part of life. I am having a harder time overcoming the work/driving loss. I live in a remote area without public transportation, I want to volunteer in lieu of working, perhaps for the Epilepsy Foundation or the Make A Wish Foundation, but transportation remains an issue. It is important to continue to keep a smile and work on creative ways to find transportation for those such as myself. There is always that stigma we must overcome and I will lead that charge. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Jun 21 EBR Posts **Tags:** Refractory epilepsy, transportation, Vagus Nerve Stimulator, VNS --- ### [Epilepsy Stigma: Afraid to tell others about epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/afraid-to-tell-others-about-epilepsy.html) **Published:** July 29, 2021 **Author:** Soo Ihm **Excerpt:** Stigma is still an issue for those living with epilepsy. So, it's understandable why we are afraid to tell others about our condition. Let's talk about epilepsy stigma. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/03/soo-img_4531-e1551409315655-279x300.jpg "soo img_4531 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/system-of-support.html/attachment/soo-img_4531)**Epilepsy Stigma** Due to the stigma, it is understandable that we who live with epilepsy are afraid to tell others about our condition. People have thought it to be related to witchcraft or religious elements. The most common image of a seizure is the tonic clonic or, as they used to say, “grand mal”. This is where the person fell, writhed, perhaps and turned blue. There was also the misconception that people could swallow their tongues during a seizure. Unfortunately, these ideas still exist. #### Epilepsy is a spectrum Epilepsy is much more than this, however. There is a broad spectrum of seizure types and epilepsy syndromes, which are a combination of seizure types and other life factors. An example of an epilepsy syndrome is [Dravet syndrome](https://clinicaltrials.gov/ct2/results?recrs=ab&cond=Dravet+Syndrome&term=&cntry=&state=&city=&dist=). This is characterized by [myoclonic seizures](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/experience-with-myoclonic-epilepsy.html) and is a childhood epilepsy caused by a genetic dysfunction in the brain. There are severe developmental delays. CBD and the newly approved Epidiolex have been proven to be effective treatment in some cases. The ketogenic diet and VNS may also be helpful. Sodium channel blocking medications should be avoided, as they will exacerbate seizures. There are even what I call “silent seizures,” ones that people don’t notice unless they know you have epilepsy. Those are the ones where you stare for a moment or two, absence or “petit mal”. However, when the seizures get longer and you lose consciousness, that’s when they pose a problem. #### When is the right time to tell a friend? It is best to tell the people you meet and will be establishing a long-term relationship about your epilepsy before an incident happens. However, this can be a sensitive issue. Finding the right time may be difficult, but getting it out as soon as possible is important. When it comes to personal relationships, either the person will accept you for who you are, or they will not. This can determine whether they are worth spending time together in the future. #### When is the right time to tell work? Regarding employment, I normally do not reveal my epilepsy during a job interview, as it may scare employers away. Unless I think it may work to my advantage, such as at an epilepsy-related nonprofit, I do not advertise myself with a capital E. During the job interview, they may ask questions like, “Can you do x task?” Or, “how would you accomplish x, y, or z?” If you were hindered because of your epilepsy somehow, but could do the job if you had an accommodation, mention that without mentioning the seizures. When you are hired, that is the time to explain your situation and educate everyone you will be working with about your epilepsy, and about what they should do if you have a seizure. I learned this lesson first-hand when I applied for a part-time job at an anthropological museum. I thought the interview was going well. Then the interviewer asked me if I had any questions for her. I brought up my epilepsy, then she made some excuse about my not being qualified for the job because I couldn’t drive. There was absolutely nothing in the job description about driving. I knew it was just because she was afraid of the epilepsy that she refused to consider me for the job. #### Ultimately the decision is yours In the end, however, your workplace should be friendly to people with disabilities. Otherwise, you will not be happy there. I was fortunate that I was able, later on, to work in a supportive environment, in a law library. We, as the epilepsy community, need to be courageous and speak out. We must educate the everyone about the disease, or else ignorance will prevail. ![author avatar](https://secure.gravatar.com/avatar/d52fbb50f14201cb1c4aa52292adb331e89b5086a1db0c1711fed2af943b5367?s=300&d=mm&r=g) Soo Ihm Soo writes the blog Soo’s Epilepsy Corner and is a regular contributor to Living Well With Epilepsy. She lives in Orange County, California. She enjoys traveling, and has been to Europe three times. Her next journey will be just as interesting, with the RNS. [See Full Bio](https://livingwellwithepilepsy.com/author/sooihm) [ ](https://livingwellwithepilepsy.com/author/sooihm) **Categories:** Epilepsy Stories, Jun 21 EBR Posts **Tags:** epilepsy stigma --- ### [Life after an epilepsy diagnosis: Rafaela reminds us, we can be happy](https://livingwellwithepilepsy.com/epilepsy-stories/life-after-epilepsy-diagnosis.html) **Published:** July 27, 2021 **Author:** Guest Contributor **Excerpt:** Rafaela has shared her story to show that is possible to have an amazing life after an epilepsy diagnosis. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/03/img-155937-e1555715754468-698x1024.jpg "img-155937 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=20068)Rafaela’s Story Hi! I’m Rafaela, 31 years old, from Brazil, and living in Marina del Rey, CA. I decided to show people that are affected directly or indirectly by [epilepsy](https://livingwellwithepilepsy.com/about-epilepsy), friends and family, that is possible to have an amazing [life after an epilepsy diagnosis](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/5-tips-for-dealing-with-an-epilepsy-diagnosis.html). It’s important to educate and end the stigma around the condition. So I want to get people together because it’s time to build awareness. #### Epilepsy diagnosis People need to know they’re not alone. I’m in my thirties, and it took me 20 yrs to accept and talk about epilepsy. I’m blessed, my husband, family and friends are very supportive. I just [had a baby](https://livingwellwithepilepsy.com/2021/personal-epilepsy-stories/epilepsy-and-pregnancy-what-to-expect.html), and his birth date is March 26, which is [Purple Day](https://livingwellwithepilepsy.com/2017/aboutus-lwwe/emilys-perspective/emilys-perspective-purple-day-2017.html)! What are the odds? Well, I feel that this is more than a huge coincidence, I consider it a blessing. I have shared the story of my baby, and despite the risk of congenital malformations, due to epileptic medication, I had my baby and went through pregnancy without seizures. Meaning I have epilepsy, and this didn’t stop me from trying to having a child. Epilepsy doesn’t define me, and it shouldn’t define anyone. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Jun 21 EBR Posts --- ### [Is it a seizure or a dream?](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-blog-relay-is-it-a-seizure-or-a-dream.html) **Published:** July 28, 2021 **Author:** Guest Contributor **Excerpt:** You know that dream where you realize you are naked or nearly naked in a public place... the one where you are barefoot walking down a long hallway in a large hotel with no idea why you are there? Here's the thing, it happened to me and it was a seizure. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/11/IMG_3817-e1519783192686-225x300.jpg "IMG_3817 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/img_3817)Yarrow’s Story You know that dream where you realize you are naked or nearly naked in a public place… where all of a sudden you look down at yourself and you are wearing your pajama top and tiny boxers and you are barefoot walking down a long hallway in a large hotel with no idea why you are there. Here’s the thing, it happened to me and it wasn’t a dream. I have epilepsy, with tonic-clonic (grand mal) seizures on awakening. That makes it sound as if I have a seizure every time I wake up, but I don’t. I have had about a total of 30 seizures in the past 26 years. Now back to me, barefoot, walking along a hotel hall, at six in the morning. Where am I? Umm a hotel, I think? Yes. What hotel? Where? Why? San Francisco, yes. I gotta get back to the room. But what room number? And where in the hotel am I? I am walking along the deserted (and starting to feel rather eerie) hallway, and I am having a jamais vu. This hall that I walked down eight hours ago is now completely foreign to me. I just have to find the front desk. But what will I say to them? How can one be panicked and absolutely calm at the same time? Endorphins? The sensation of hotel carpet is both good and terribly wrong on my bare feet. I am just starting to feel slightly cold with my legs bare and yet the cool air feels invigorating against my skin. #### The Lobby I think I am heading the right way to the front desk. When I arrive in the lobby I find the lights too bright and the marble floor is cold against my bare feet. I am slightly unsteady on my feet but walk forward towards the front desk. My sense of self is elusive and wavering just out of reach. I remember the room isn’t even in my name. Then in a flash I remember the important details and pure instinct takes over. I say to the desk attendant, “I forgot my room number. The room is under my friend Joelle’s name but she added me to the reservation. She is in the hospital and was supposed to come back to hotel with us after surgery but she had to stay over night and now her daughter is in the room by herself.” The clerk says nothing as he looks up the details and just hands me a new key and tells me the room number. I breathe a sigh of relief. My self awareness is back, and with a small amount of dignity, I turn to walk back towards the way I had come. Following some inner compass now guiding me tentatively in the direction of our room. I must have had a seizure. Again the sheer devastation at the realization that I had another seizure and at the same time the calm acceptance. [Learn more about Nocturnal Seizures](https://www.hopkinsmedicine.org/health/conditions-and-diseases/epilepsy/nocturnal-seizures) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Grand Mal / Tonic Clonic, Jun 21 EBR Posts **Tags:** nocturnal seizure --- ### [A Lifetime with epilepsy and a little help from VNS Therapy](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-blog-relay-a-lifetime-with-epilepsy-and-a-little-help-from-vns.html) **Published:** July 24, 2021 **Author:** Guest Contributor **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/11/Snapshot_20140217_3-300x225.jpg "Snapshot_20140217_3 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/snapshot_20140217_3)March 12#### Betty Gail’s Story My journey with epilepsy began at the very young age of 6 months old. I contracted meningitis, and needed brain surgery to remove fluid that had built up on my brain. Then at about the age of nine, the seizures started. My doctors always assumed that they came from the meningitis I had as a baby. #### Medication I started taking phenobarital first. Like many other people, I tried many medications through the years, none of which controlled the seizures for any length of time. Some actually made me have more seizures. My life from childhood through the teen years, and even my time as a young adult, was very challenging. Trying to maintain some form of normalcy while having seizures, taking the medications, and recovering from them made life unbearable at times. #### Surgery In 1991 I had a left temporal lobe brain surgery, and I was seizure free for approximately 10 years, but then the seizures came back. I went back on medicine, but nothing ever controlled them completely. I missed a lot of time from school and work, because the recovery from the seizures was actually worse than the seizure itself. It was very difficult trying to explain to family and friends, and later on to bosses and coworkers, about my epilepsy. I felt misunderstood since the type of seizure I was having there were no visual effects that anybody could actually see. I mostly had them in my sleep. #### VNS Therapy The years passed by and I coped the best I could. Then in 2012 a new doctor came to town. I entered the hospital and went through the routine gambit of tests. Turns out that I was a perfect patient for a Vagus Nerve Stimulation or VNS Therapy implant. So, in December of 2012 I had the VNS surgery done, and I have been seizure free for over 4 years now!!! According to the Mayo Clinic, about one-third of people with epilepsy don’t fully respond to anti-seizure drugs. Vagus nerve stimulation or VNS Therapy may be an option to reduce the frequency of seizures in people who haven’t achieved control with medications. Vagus nerve stimulation may also be helpful for people who haven’t responded to intensive depression treatments, such as antidepressant medications, psychological counseling (psychotherapy) and electroconvulsive therapy (ECT). To learn more visit: #### In closing There are several more chapters in my journey, but I only had time and space for the short version. Thank you for taking the time to read my story! I’m living proof that you should never give up or lose hope! God Bless!! ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Jun 21 EBR Posts, Treatments **Tags:** VNS --- ### [Naomi shares Ethan's story of ARX, a rare genetic disorder](https://livingwellwithepilepsy.com/aboutepilepsy/seizure-types-syndromes/rare-epilepsy/naomi-shares-ethans-story-of-arx-a-rare-genetic-disorder.html) **Published:** July 22, 2021 **Author:** Jessica K. Smith **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/02/8e7b1d_863a6b60ca5b4eb3a41b8b8c73706792mv2.jpg "8e7b1d_863a6b60ca5b4eb3a41b8b8c73706792~mv2 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/home/attachment/8e7b1d_863a6b60ca5b4eb3a41b8b8c73706792mv2) #### Naomi’s Story Naomi’s blog, [Ethan’s Stars](https://www.ethansstars.com/), shares stories from their family and from Ethan’s life with [Aristaless Related Homeobox or ARX](http://epilepsygenetics.net/arx-this-is-what-you-need-to-know/). It took the family two years to get the diagnosis of ARX, a rare genetic disorder which causes epileptic seizures and developmental delay. According to Naomi, “Every year Ethan continues to learn so much, increases his awareness and becomes stronger and understands more every day. Ethan can now communicate well with his eyes, can stand for longer periods of time in various aids and even managed to walk down the aisle at our wedding in his walking frame. Ethan is able to understand some symbols and pictures and is also able to understand his routine. Throughout his life, despite having regular seizures and many bouts in hospital, Ethan smiles and laughs all the time. He is a joy to be around and lights up my world every day.” [](https://www.ethansstars.com/single-post/2018/03/07/Packing-for-the-hospice)[Check out Naomi’s Post ](https://www.ethansstars.com/single-post/2018/03/07/Packing-for-the-hospice) #### About ARX According to [Beyond the ION Channel](http://epilepsygenetics.net/arx-this-is-what-you-need-to-know/) from the ILAE, ARX is associated with a spectrum of overlapping neurological conditions, including X-linked intellectual disability, West syndrome, Partington syndrome, Ohtahara syndrome, Proud syndrome, and X-linked lissencephaly with abnormal genitalia \[[OMIM#300382](https://omim.org/entry/300382)\]. These *ARX*-related conditions are characterized by variable features, including intellectual disability, epilepsy, movement disorders, EEG findings or brain abnormalities. In 2002, [three different groups](https://www.ncbi.nlm.nih.gov/pubmed/16078051) of investigators identified pathogenic variants in *ARX* as the cause of five distinct phenotypes including X-linked lissencephaly with abnormal genitalia, Partington’s syndrome, X-linked infantile spasms, and non-syndromic X-linked intellectual disability. Thus, it was clear that from the start that *ARX* variants could cause a broad range of phenotypes. In 2009, [two male cousins](https://www.ncbi.nlm.nih.gov/pubmed/19738637) with the same *ARX* pathogenic variant were diagnosed with two different epilepsy syndromes, West syndrome and Ohtahara syndrome, indicating the degree of variable expressivity associated with *ARX*-related conditions, even with the same variant in the same family. [Female carriers](https://www.ncbi.nlm.nih.gov/pubmed/11891829) may have intellectual disability, epilepsy, and often display agenesis of the corpus callosum. This finding is consistent with X-linked inheritance with variable expression in females. #### More Scientific Info on ARX [Abstract from Frontiers in Cellular Neuroscience](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2841486/) Genetic investigations of X-linked mental retardation have demonstrated the implication of *ARX* in a wide spectrum of disorders extending from phenotypes with severe neuronal migration defects, such as lissencephaly, to mild or moderate forms of mental retardation without apparent brain abnormalities, but with associated features of dystonia and epilepsy. These investigations have in recent years directed attention to the role of this gene in brain development. Analysis of its spatio-temporal localization profile revealed expression in telencephalic structures at all stages of development, mainly restricted to populations of GABA-containing neurons. Furthermore, studies of the effects of *ARX* loss of function either in humans or in lines of mutant mice revealed varying defects, suggesting multiple roles of this gene during development. In particular, *Arx* has been shown to contribute to almost all fundamental processes of brain development: patterning, neuronal proliferation and migration, cell maturation and differentiation, as well as axonal outgrowth and connectivity. In this review, we will present and discuss recent findings concerning the role of *ARX* in brain development and how this information will be useful to better understand the pathophysiological mechanisms of mental retardation and epilepsy associated with *ARX* mutations. *Friocourt G, Parnavelas JG. Mutations in ARX Result in Several Defects Involving GABAergic Neurons. Front Cell Neurosci. 2010;4:4. Published 2010 Mar 11. doi:10.3389/fncel.2010.00004* ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Jun 21 EBR Posts, Rare Epilepsy **Tags:** arx, Epilepsy Blog Relay, genetic epilepsy, rare epilepsy, rare genetic --- ### [Special Needs Parenting: When it's okay to be a helicopter parent](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-blog-relay-that-one-time-where-its-okay-to-be-a-helicopter-parent.html) **Published:** July 19, 2021 **Author:** Jennifer Lounsbury **Excerpt:** Jennifer shares that sometimes being a helicopter parent is just being a good parent. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/03/img_5909-300x300.jpg "img_5909 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/epilepsy-blog-relay-that-one-time-where-its-okay-to-be-a-helicopter-parent.html/attachment/img_5909-2)Jen’s Story “Time to Build Castles” is taken from an Irish proverb, “It takes time to build castles.” For me, it means that nothing great can happen instantly. It takes time, planning, careful preparations, and even mistakes. I took this for my blog because when you’re raising a child with disabilities, it’s important not to get caught up in the speed at which things are happening around you. We started slow and are building a solid foundation! #### Being a helicopter parent I may be wrong, but I think by the time your child turns 7, they can likely sit and play by themselves with a parent nearby. They can take supervised baths and generally not have to worry. But, I have an admission: I’ve become a helicopter parent. Maybe not in quite the same way that it is defined by society, but, it’s something I have to be. Otherwise, Colleen could get seriously injured. Between where she is developmentally and with epilepsy, there’s just no question about leaving Colleen alone at any time. It just cannot be done. Over Christmas break, Colleen came down with the flu. This made her myoclonic jerks a lot worse and also brought bath safety to the forefront. When she was younger, she had a lot less so I could sit beside the tub and she’d happily play and splash. That all changed when she had increased daily myoclonic jerks. Sitting next to the tub just isn’t close enough, even though I’m right there. Over the fall, as she was in the bath, she had a jerk and her head dropped into the water. It was an instant and even though I was right there, I felt like I couldn’t move fast enough. She was thankfully okay, but I was so afraid of her aspirating water. So, now my fear and anxiety have me in with her. #### Special Needs Parenting With Colleen, we know when she needs things, like when we got her wheelchair and her posterior walker. But, then there are situations like with the bath where we didn’t know we needed something until a situation happened. When her service coordinator stops by, one of the things we go over is things Colleen would need that would make like easier. Things like lifts, ramps, accessibility options. I brought up the bath concern with the coordinator, and now we are looking at bath seats that would be used. I feel bad that a lot of the fun things she enjoys would be hindered, but I know she will still be able to still splash and play, and momma won’t have a heart attack! Her daily life is constantly evolving. There are times when I think we won’t need a lot because she is very capable and getting stronger. But now I’m realizing more and more that there could be possible setbacks, and things, like the shower chair, would be such a help. As her mom, I have to remain constantly vigilant against the things Colleen could get hurt on, knowing most of her capabilities and her understanding of her surroundings. But, as a parent, I don’t think there’s ever a time where I won’t worry. I do think in this case, and with other parents of children with disabilities, it’s perfectly okay to be a helicopter parent! (Unless, of course, there’s a better word!) --- ***Don’t forget*** to check out any of the [Epilepsy Blog Relay posts](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) you may have missed. [Share your story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) Terms and Agreement I agree ![author avatar](https://secure.gravatar.com/avatar/2d7fe6c0eded69888607fe806fbe9bc4b4f814de382f989b182dab6125aed61c?s=300&d=mm&r=g) Jennifer Lounsbury CP/Epilepsy Advocate. Photographer and designer. “Courage, dear heart.” [See Full Bio](https://livingwellwithepilepsy.com/author/jennylouns) [ ](https://livingwellwithepilepsy.com/author/jennylouns) **Categories:** Epilepsy Stories, Jun 21 EBR Posts --- ### [4 Common Epilepsy Side Effects and Tips on How to Deal with Them](https://livingwellwithepilepsy.com/epilepsy-stories/living-with-side-effects.html) **Published:** July 18, 2021 **Author:** Rachel Ehrhardt **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2016/05/IMG_4694-225x300.jpg "Rachel E. – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/img_4694)Rachel on epilepsy side effects I thought I might cover a few specific epilepsy side effects that I have suffered and how I have learned to cope. I have to state here, this is how I have dealt with these side effects, and my solutions may not work for you. Also, some never experience side effects and that’s cool too. The list I have composed are my top four [side effects](https://livingwellwithepilepsy.com/2015/aboutus-lwwe/emilys-perspective/effects-of-epilepsy.html). There have been many more, but due to time constraints these were the most applicable. #### Forgetfulness The first side effect that immediately came to mind was forgetfulness. (pardon the pun!) This has been a common issue with many different medications. While it has improved greatly with time it is still a common theme. My forgetfulness first became apparent to me when I was in high school. I would forget to take my pills, to be at appointments, and even to eat sometimes. If you’ve ever met me, you know I am pretty Type A personality-wise. So forgetting details or dates was very unlike me and very frustrating to say the least. I had to come up with a solution. The solution was pretty simple, but it was a matter of putting “fail-safes” in place. For almost everything in my life, I began setting alarms for things. The first thing that got an alarm (and still does twice a day) was my meds. This has to be both a priority and something done at the same time every day so why not set an alarm for it. #### Appetite The next thing I had to set an alarm for, at the time, was to eat a few times per day. The medication I was on is an infamous one that tends to take away your appetite. Don’t worry that goes away in a few months. My life has evolved into not using alarms but utilizing my calendar. There’s a cool tip someone shared with me a few months ago that I think this group would use: there’s a feature on google calendar that allows you to set reminders up to 18 hours in advance all the way up to 5 minutes before. It will vibrate or make a noise on your device at the time of an event. #### Tingly Feet and Hands The next side effect is tingly feet and hands. It’s one of the most annoying I believe. In the beginning the tingles would usually feel like I was cold or dehydrated. I tried to treat all of these symptoms. So, I would put socks on before bed and I would drink extra amounts of water to treat the what I thought was dehydration. The only ways I have ever found to treat the tingles is with two things: 1) make sure you monitor your electrolytes. I usually try and drink a bit of Gatorade when I feel off. 2) potassium/magnesium. Make sure you are taking your multivitamins and adding a bit of each extra to your vitamin list. I also find that I keep an extra banana in my purse for days when I need a snack and magnesium supplements truly helps me sleep. --- #### RELATED: [Changing medication to manage side effects](https://livingwellwithepilepsy.com/2013/livingwell/ask-an-epileptic-change-medications.html) --- #### Sleepiness The final side effect for now, is that of constant sleepiness. I usually go through waves of this feeling. Most of the time it’s right after beginning a new medication, going up on a medication, or removing a medication for my cycle. There are periods were I feel as though I could sleep for days at a time. This seems to me like the slipperiest slope. The sleepiness side effect is the hardest one to have a long term treatment plan not just for myself, but for many others. There are a couple ways I have found to combat this. First, ROUTINE, ROUTINE, ROUTINE! Try and get up at the same time each day, stay up all day, set a list of things you have to get done before you can nap. Secondly, try and get some form of cardio exercise daily. If you tire yourself out fully you will sleep better at night and begin to get on better sleep habits and routines. I hope that this gave some tips that maybe you hadn’t thought of before and maybe will provide some help to someone that needs to hear it most. *If you are struggling with these or any side effect and you cannot get relief, contact your physician* ![author avatar](https://secure.gravatar.com/avatar/82d406d4460971f22d36968d14d1294a2a0c55c719c5b66a09acb2d2ad3872f2?s=300&d=mm&r=g) Rachel Ehrhardt Rachel Ehrhardt Streelman is from Houston , Texas. She has been a writer and contributor to Living Well with Epilepsy for two years. Rachel has had epilepsy since 9 months old. She comes from a family where her father, sister, and herself all have different forms of epilepsy. Rachel is married to Casey and they have a Cavapoo named Sheldon. [See Full Bio](https://livingwellwithepilepsy.com/author/rachel) [ ](https://livingwellwithepilepsy.com/author/rachel) **Categories:** Epilepsy Stories, Jun 21 EBR Posts, Side Effects --- ### [Epilepsy Blog Relay: Living with Tuberous Sclerosis](https://livingwellwithepilepsy.com/epilepsy-stories/living-with-tuberous-sclerosis.html) **Published:** July 13, 2021 **Author:** Guest Contributor **Content:** #### Rachel’s story My name is Rachel Skaug, formerly Rachel Kaalberg, and I had epileptic seizures as a child. My seizures started at four months old, which was in 1988, and lasted until I was 10 years old. I am from Madison, Wisconsin. Much of my testing happened at Mayo Clinic in Rochester, Minnesota. I had many tests such as blood tests, EEGs, PET scans and MRIs. I tried many medications and the [ketogenic diet](https://livingwellwithepilepsy.com/2013/epilepsy-news/ketogenic-diet.html) (a diet high in fat, low in protein and low in carbohydrates). The diet forces the body to burn fats rather than carbohydrates. It is sometimes used to help control seizures under strict medical supervision. Medication and dietary changes did not work for me. Therefore, I had to have surgery — I had five surgeries. Three in 1997 and two in 1998 at a hospital in Rochester, Minnesota. #### Freedom from seizure activity My parents stayed at the [Ronald McDonald House](https://www.rmhc.org/) in Rochester, Minnesota, during my hospital stays. My younger brother stayed with numerous relatives. The last surgery I had was the miracle that stopped my seizures, and I discontinued medications a year after my surgery. During the last surgery, they removed a 50-cent-sized piece of my right temporal lobe, which stopped my seizures. Today I have been seizure free since June 10, 1998, and still going strong. After my surgeries, the doctors diagnosed me with Tuberous Sclerosis (a genetic disease that causes benign tumors to form in many different organs — primarily in the brain, eyes, heart, kidney, skin, and lungs). I do have a few issues with comprehension, such as remembering what I read, but I work hard remembering things in picture format to understand what I read. #### What is Tuberous Sclerosis? According to the National Institute of Neurological Disorders and Stroke, [Tuberous Sclerosis](https://www.ninds.nih.gov/disorders/patient-caregiver-education/fact-sheets/tuberous-sclerosis-fact-sheet#one) is a rare, multi-system genetic disease that causes benign tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs, and skin. It usually affects the central nervous system and results in a combination of symptoms including seizures, developmental delay, behavioral problems, skin abnormalities, and kidney disease. The disorder affects as many as 25,000 to 40,000 individuals in the United States and about 1 to 2 million individuals worldwide, with an estimated prevalence of one in 6,000 newborns. Tuberous Sclerosis occurs in all races and ethnic groups, and in both genders. [LEARN MORE FROM THE TS ALLIANCE ](https://www.tsalliance.org/) #### Looking back at childhood Now I am a healthy adult with a family and no medical issues for me or my daughters. Every two years I continue checkups for lesions on my brain and in my kidneys. My experience was tremendous, and all the doctors and nurses that worked with me were great in helping me beat epilepsy. I am thankful and grateful for all the people involved that helped me try anything and everything to overcome my seizures. Find my book called [“Epilepsy Through A Child’s Eyes”](https://www.amazon.com/Epilepsy-Through-Childs-Rachel-Skaug-ebook/dp/B07B9GHBHQ) on Amazon paperback and kindle. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Jun 21 EBR Posts **Tags:** Tuberous Sclerosis --- ### [Reimagining The Third Door Following an Epilepsy Diagnosis](https://livingwellwithepilepsy.com/epilepsy-stories/reimagining-the-third-door-following-an-epilepsy-diagnosis.html) **Published:** July 9, 2021 **Author:** Landis Wiedner **Excerpt:** Landis shares how her epilepsy diagnosis caused her to reimagine Alex Banayan's concept of The Third Door. **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/07/Fall2-225x300.jpeg "Fall2 – Living Well With Epilepsy") #### Landis’ Story Two years ago, in a desperate search for my lost love of writing, I read [*The Third Door* by Alex Banayan](https://amzn.to/3xs07ck), a book about attaining personal success by using the metaphor of getting into a nightclub: “There’s the First Door: the main entrance, where 99 percent of people wait in line, hoping to get in. The Second Door is the VIP entrance, where the billionaires and celebrities slip through. But what no one tells you is that there is always the Third Door. It’s the entrance where you have jump out of line, run down the alley, bang on the door a hundred times, crack open the window, and sneak through the kitchen–there’s always a way in.” Banayan’s book is motivating, vulnerable, and tells an incredible story. I loved it. But as someone with epilepsy, it was also torturous. Jealousy brewed in me as I read about Alex’s late nights, spur-of-the-moment trips, and using his last drops of energy to pursue his passion, always utilizing The Third Door. I know that life. I loved that life. I lived that life. Writing has been a part of me before I knew the alphabet. I dictated stories to my pre-school teachers who carefully wrote down plotlines of ponies’ complex character arcs. More literary at age seven, I took to poetry, using stunning imagery to describe Easter eggs. When we had to write our first persuasive essay in 3rd grade about whether or not people should bungee jump (that’s a normal 9-year-old issue, right?), the teacher read my essay aloud to the class because I wrote jokes to convince people out of jumping off a bridge. It was the first time I realized my writing could be funny to prove a point. Despite the wayward career path of my 20s, I always made time for writing, exploring any avenue that would take me. Hours and late nights were spent on blog posts or think-pieces, attending writing classes, and taking on random editor positions. Eventually I focused solely on [*Type 1*](https://www.kickstarter.com/projects/1613779531/type-one?ref=discovery_category&term=type%20one), a comedic web series Mike (my best friend/writing partner) and I created to raise awareness about Type 1 diabetes. Every step of the way, we jumped out of line, broke windows, and relished in the hard work and what it might lead to. #### Reimagining the Third Door That Third Door life vanished overnight. I had a seizure, which I learned quickly was from a brain tumor. Two months later, the same day we were slated to film *Type 1*, I had brain surgery instead. Mike and I remained optimistic about getting back to our filming schedule, thinking it would only set us back a few months. It’s the classic I-just-had-brain-surgery-please-buy-my-web-series fairytale we all dream about. Four weeks later and two weeks into radiation, I had my first epileptic seizure. Which began the longest and most complicated journey of self-discovery I hope to ever encounter. My epilepsy is very sensitive to energy expenditure. A [trigger](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/epilepsy-blog-relay-creative-solutions-to-seizure-triggers.html) for my seizures is when I overdo it, like going to work and out to dinner on the same day. Just livin’ la vida loca. It’s been a painful pivot. Between having seizures, recovering from seizures, and taking anti-seizure medication (which is like starting and ending each day with a sleeping pill), my energy supply is much lower. Every conversation, every interaction, every decision is weighed on how likely it may or may not trigger a seizure. Most painful of all is that at the end of each day, I have zero energy left to write. With the acceptance of my epilepsy, I also realized a hard truth: The Third Door is no longer an option. #### Discovery of the Fourth Door For years, this has been a source of deep-seeded pain. My life without writing felt like Destiny’s Child without Beyonce. My jealousy and longing flared when I heard successful people talk about the “day in, day out” or “late nights and constant hours.” I wanted nothing more than to stay up until 2 A.M. working my butt off, but that’s like playing a game of Chicken with a seizure. I realized that in order to get back my lost love of writing, I had to let go of the Third Door lifestyle and create The Fourth Door. It’s quite the opposite of running down alleys or banging on doors to push your dreams forward. The Fourth Door requires a slow and patient chiseling at the concrete entrance that’s blocking the light from the other side. (Also, I’m no longer trying to get into a nightclub because I already did my 20s, thank you.) I see it like Andy Dufrense in *Shawshank Redemption*. It is tested, relentless hope. So I chisel. I write in the morning, rather than the end of the day. Sometimes I write in for ten minutes, sometimes 60 if I’m lucky, or sometimes not at all. I enrolled in the amazing Susan Shapiro’s [online courses](https://www.susanshapiro.net/), known for helping students learn how to get published quickly. I napped before each session to have the bandwidth for a 3-hour class and often struggled to make it through. As my peers snagged byline after byline, I told myself to be patient. And though we ache to pick up *Type 1* again, Mike and I know it’s just another thing that will come in time. I still get frustrated with my slower pace. But I remind myself that there is joy in chiseling, especially as [light begins to peek](http://landisanna.com/writing) through the other side of my Fourth Door. I’ve started to get my own bylines on [NBC](https://www.nbcnews.com/think/opinion/justin-fields-nfl-draft-2021-rank-teachable-moment-ncna1266026) and [Wired](https://www.wired.com/story/how-smartphone-can-help-cope-epilepsy/), with a feature in the [*Chicago Tribune,*](https://www.chicagotribune.com/living/health/ct-bears-justin-fields-epilepsy-community-health-reaction-20210514-w5k5ozs6zzbufnyx5rpen6xbg4-story.html) ironically writing about the thing that’s been holding me back: epilepsy. It turns out what led me to The Fourth Door is ultimately what opened it. ![author avatar](https://secure.gravatar.com/avatar/19f5d1347b7f55432fb2ccf0b0547690de128dddd6f088aac79df9f670cd34f1?s=300&d=mm&r=g) Landis Wiedner Landis is a Chicago-based writer, whose work has been featured on [NBCNewsTHINK](https://www.nbcnews.com/THINK), [Wired](https://www.wired.com/) and [Chicago Tribune](https://www.chicagotribune.com/). She is a writer and Editor for Living Well With Epilepsy. Landis brings a humorous perspective to life with epilepsy. Diagnosed at 32 years old, she sheds light and laughs on managing a new life with seizures. Landis strives to create a touchstone for the chronically ill and those who support them. She is currently finishing a humorous memoir, “My Brain Tumor’s Boyfriend.” [See Full Bio](https://livingwellwithepilepsy.com/author/landiswiedner) [ ](https://livingwellwithepilepsy.com/author/landiswiedner) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://twitter.com/BillieTopanga) **Categories:** Epilepsy Stories, Jun 21 EBR Posts --- ### [Adjusting to an Epilepsy Diagnosis](https://livingwellwithepilepsy.com/epilepsy-blog-relay/jun-21-ebr-posts/adjusting-to-epilepsy-diagnosis.html) **Published:** July 7, 2021 **Author:** Guest Contributor **Excerpt:** Kristine shares her experience with adjusting to an Epilepsy Diagnosis. She describes her fears, denial and experience of feeling isolated. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/03/26140_1408589857924_1327780045_1124400_5899557_n.jpg "kristine_26140_1408589857924_1327780045_1124400_5899557_n – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2018/03/26140_1408589857924_1327780045_1124400_5899557_n.jpg)Kristine’s Story I am 40 years old and was recently diagnosed with Epilepsy. A few years ago I was at the beach and began feeling “sick” I decided to leave and stopped at a drive thru to get something to drink….the next thing I remember is waking up in the hospital. It turns out I had experienced severe anemia which triggered a “seizure like” episode. I didn’t dwell on it and went on with my life. Later that year, I was grocery shopping with my family and began feeling dizzy…..next thing I remember is waking up in an ambulance terrified. My husband recalled that I froze, began shaking violently and without warning I hit the ground hard. Both he and my son thought I died. #### The Patient Journey Begins This time my experience was not so simple. I began a long journey of doctors and trying to decide if I needed medication to manage my seizures. I tried two different medications and neither one worked. Both medications also gave me awful side effects. I then went in to denial, this was not fair and I didn’t want to deal with it I just wanted to live my life and be happy. Which brings me to this an episode where I was shopping with my family again and basically had a seizure in Walmart. I apparently shut the store down. It is nice to hear how people helped my husband and son but I have no memory of the episode just of waking up in the hospital. #### The emotional toll sets in This is really taking a toll on me emotionally, and my doctor does not think I should drive for three months. I began a new medication which I am tolerating well this time, so I do have some hope. But adjusting to this diagnosis is still a challenge. #### Challenge of adjusting to an epilepsy diagnosis I am not the same person, and do feel scared every time I am alone, and that is just not me. I hope to develop a network of support, I have a feeling I am going to need it. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Jun 21 EBR Posts --- ### [Shareable Quotes from Epilepsy Blog Relay Stories](https://livingwellwithepilepsy.com/epilepsy-stories/shareable-quotes.html) **Published:** July 6, 2021 **Author:** Jessica K. Smith **Excerpt:** Here are a few great quotes from this month's Epilepsy Blog Relay stories. Feel free to share these on social media. Each image links through to the full story. **Content:** Here are a few great quotes from this month’s Epilepsy Blog Relay stories. Feel free to share these on social media. Each image links through to the full story. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/07/Twitter-quote-green1-1024x576.png "Twitter quote green(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2021/epilepsy-blog-relay/jun-21-ebr-posts/when-embracing-cowardice-shows-bravery.html) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/10/Twitter-quote-pink-1024x576.png "Twitter quote pink – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2021/personal-epilepsy-stories/on-explaining-epilepsy-to-peers.html) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/07/Twitter-quote-1024x576.png "Twitter quote – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2021/epilepsy-blog-relay/jun-21-ebr-posts/when-hope-returns-to-a-life-with-epilepsy.html) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Stories, Jun 21 EBR Posts --- ### [Epilepsy - My Invisible Disability](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-my-invisible-disability.html) **Published:** July 6, 2021 **Author:** Guest Contributor **Excerpt:** Edward shares, "For the past thirty-three years, I have been living with epilepsy, an invisible disability." **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/08/zern-and-ed-during-team-training-at-cpl_o-798x1024.jpg "zern-and-ed-during-team-training-at-cpl_o – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2020/08/zern-and-ed-during-team-training-at-cpl_o.jpg)Edward’s Story For the past thirty-three years, I have been living with epilepsy, an invisible disability. Epilepsy is neurological disease in which my brain activity becomes abnormal, causing seizures or periods of unusual behavior and sensations, much of which, are invisible. #### My Balance Issues – are invisible My epilepsy is responsible for problems with my balance and movement. This is primarily because the area of my brain that controls my balance and movement is one of the areas where my seizures are frequently occurring and also the area that my brain surgery touched. Unfortunately, my [seizure medications](https://livingwellwithepilepsy.com/medications) are adding to the difficulty with my balance. That’s because my medications affect the area of my brain controlling coordination and they have the side effects of dizziness and balance issues. The result is that there are many instances without warning that I completely lose my balance. This loss of balance has led to severe injuries such as broken bones. I deal with this problem by always making sure I have the necessary support needed when I am standing up and when I am walking. #### My Anxiety issues – are invisible It is common to become anxious after being diagnosed with epilepsy. But the anxiety related to my epilepsy is more specific in many ways. I feel anxious before and after each of my seizures happen or as a result of a side-effect of an epilepsy medication. I also feel anxious being excluded from many things I enjoy simply because of my epilepsy. [Anxiety](https://livingwellwithepilepsy.com/2021/personal-epilepsy-stories/fake-it-til-you-make-it.html) affects different people in different ways and it can be very difficult for epilepsy patients like myself to describe or discuss. Most individuals like myself with this condition consult their doctor about medications that can work for anxiety issues or seek psychotherapy counseling that teaches how to recognize and change thought patterns and behaviors that trigger deep anxiety or panic. #### My Memory Issues – are invisible My memory processing is constantly interfered with by my epileptic seizures, my anti-epileptic medications and my brain surgery. Memory is a natural brain process that requires continuing attention and recording by parts of the brain. My seizures interfere with my memory, by interfering with attention or input of information to my brain. Confusion often follows my seizures, and during this foggy time new memory traces are not being laid down in my brain. Also, as a result of my left-temporal-lobe surgery, I lost the use of my “short-term-memory” – related to storage of facts and information, along with the ability to recognize or remember faces or objects. I can’t remember what was said to me just a few minutes ago or remember what happened a few hours ago or even yesterday. My memory is a tremendous challenge for me every second of every day in my life. To really understand the problems with my memory – I can’t remember the names or the faces of many of my family members or friends that I met since I had my brain surgery. When I see someone again it is like I have to be reintroduced to that individual again. To avoid any confusion, whenever I am introduced to someone – I explain that I won’t be able to recognize them in the future – due to my epilepsy. This works because individuals come to me and reintroduce themselves whenever we pass each other again. Anything that is important to me I have to find a way of saving it on paper or it will be lost forever. So, I take notes on important things that I need to be aware of moving forward. Memory loss is one of the most difficult issues that I have had to deal with due to my epilepsy. #### My Chronic pain – is invisible I frequently experience “severe chronic head pain” as a result of my epilepsy. [This pain is severe](https://livingwellwithepilepsy.com/2016/personal-epilepsy-stories/rosarios-story-learning-pain.html) and most times truly unbearable. It starts suddenly without warning and last for many hours. I retreat into my dark bedroom where I ride out these episodes. Years ago, my neurologist referred me to a pain specialist who tested me for months with many different pain medications before finding a medication that works for me (almost every time) in these horrible situations. I always keep a pain medication pill in my pocket so whenever the head pain starts, I can immediately take my pain medication and kill the pain. Headaches and migraines are more common among people with epilepsy. #### My Depression – is invisible Living with epilepsy is truly tough. I have also been fighting a battle with depression for as long as I have been dealing with my epilepsy. It is common for me to experience anxiety, sadness, frustration, pain, anger, low self-esteem, feelings of isolation and hopelessness. I know that my seizures and anti-epileptic medications also play a role in contributing to my depression because they can affect the mood centers of my brain. Treatment for both epilepsy and depression are very tricky. People like me with depression tend to be more resistant to seizure medications, and many antidepressants cannot safely be combined with these medications. My overall emotional state of mind is partially controlled by my epilepsy and all of the invisible factors that produce pressure which can significantly take control my life. Over time I have turned to counseling and medications to deal with depression, but it is truly an ongoing battle. #### My Medication Issues – are invisible My anti-seizure medications are specifically designed to help me with my epilepsy. According to a study published in ([JAMA Neurology, 2018](https://jamanetwork.com/journals/jamaneurology/fullarticle/2666189)), [medications control seizures in only about two-thirds (64%) of people with epilepsy](https://jamanetwork.com/journals/jamaneurology/fullarticle/2666189). However, many people are unhappy with their medications. This is because of the medications side effects. Often, people with epilepsy will say that the side effects are “worse than the seizures”. Even if the seizures stop, dealing with the side effects every single day becomes impossible. #### My Brain Surgery – is invisible I had left temporal lobe brain surgery performed about eighteen years ago to reduce the frequency of my grand mal seizures. A grand mal seizure is a sudden convulsion with muscle spasms followed by a loss of consciousness. I was frequently experiencing these seizures and they were truly scary and very horrifying for me. I went through a series of test to determine the areas of my brain where my seizures were occurring. The tests showed a number of different areas of my brain responsible for my different types of seizures, but they did locate an area on my left temporal lobe that most of my grand mal seizures were occurring. I had left temporal lobe surgery performed and it was very helpful reducing the frequency of my grand mal seizures, but the frequency of my partial seizures was not affected. Also, the area in my left temporal lobe that was operated on seriously affected my short-term memory, making life more difficult. Fewer grand mal seizures as a result of the surgery was a step in the right direction, but I still had a major challenge with partial seizures on a daily basis. #### Relationship Issues – are invisible Epilepsy also affects my family and my friends. Each of my family members and friends experience it a bit differently. Studies show that the mere diagnosis of epilepsy can have a negative impact on all family members and friends. Each can experience feelings of intense anxiety as to when seizures will occur and their future implications. Also, they sense a of loss of control as there are an increased number of medical appointments and changes in daily routines. Unfortunately, these individuals, like most of the general public have no true idea how my epilepsy is affecting me and my family in so many different ways – it is not simply just the seizures. The hidden and unpredictable nature of my epilepsy make it hard for my family and friends to truly understand my epilepsy. #### My epilepsy is invisible Being disabled with epilepsy has be very hard and challenging for me to deal with on a daily basis. But add to the fact that epilepsy is an invisible disability makes it truly challenging and so frustrating in so many different ways. The pressure is always there, but I successfully deal with it. I try to live my life in as normal a way as possible. I know the strength it takes to help me make it through the day when my body is failing me, even if no one can see it. I try to stay focused to succeed in life with my invisible disability. I can’t rely on others to increase awareness about my disabilities for me. I need to figure out how to maximize the exposure of my epilepsy, so I can increase public awareness and education about epilepsy. My principal goal is to raise awareness about epilepsy for the public at large to combat ignorance, in the hope that this will lead to a better understanding and quality of life for people living with epilepsy. “Epilepsy is more than just seizures”. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Jun 21 EBR Posts --- ### [Emily's Perspective: Help your child through an EEG](https://livingwellwithepilepsy.com/epilepsy-stories/emilys-perspective/emilys-perspective-help-child-eeg.html) **Published:** February 16, 2015 **Author:** Emily Lawrence (Nee Donoghue) **Content:** [![With my EEG](http://livingwellwithepilepsy.com/wp-content/uploads/2014/03/emily_eeg.jpg "emily_eeg – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/03/emily_eeg.jpg)With my EEGRecently I have had a lot of questions on my Facebook page about how parents can help their young children with epilepsy and how to keep them calm during an EEG. Parents are often unfamiliar with the test and don’t know how to plan or prepare their child. #### What is an EEG? An EEG detects abnormalities in the brain waves or electrical activity of the brain. The brain produces electricity, which can be measured by wires glued onto the scalp. The EEG records and charts these electrical voltages. The normal up-and-down movements of the voltages create the wave-like patterns. Spikes on the EEG are markers of hyper-excitable parts of the brain, which mark potential locations where seizures may arise. The presence of spikes help when a doctor is in the process of diagnosing epilepsy. #### Why Should My Child Have an EEG? EEGs can give you valuable information about your child’s brain. It is possible that your child is having seizures or abnormal brain waves that are disrupting their development, but you can’t even see them. Not all seizures are visible. EEGs can also help provide information about sleep disorders or brain inflammation, but generally they are used as a diagnostic tool to determine what types of seizures your child may be having so they can be better treated. #### How Do We Prepare for an EEG? When I first went for my EEG I was so anxious, I was only 10/11 and I didn’t understand anything about Epilepsy, all I knew was that something seemed wrong, both me and my Family were on edge, not knowing what was going to happen. Usually there isn’t much that you have to do before an EEG. Generally you’ll be told to eat the same diet, take the same medications and sleep the same hours before your test, but sometimes your doctor may give you some special instructions, for me I got told to take my medication at a certain time, and to eat an hour before the scan. Sometimes doctors want to see how your child’s brain reacts when they are tired or sleeping so they may ask that your child be “sleep deprived” for the test. Some parents worry about this, they wonder how to keep their child awake or what not to do. This test is similar to a regular EEG, except that you will be asked to stay awake for 24 hours prior to your exam time. Children under the age of 12 who take this test are asked to remain awake from midnight until exam time. They tell you to not eat or drink anything containing caffeine between midnight and the time of your test. A sleep-deprived EEG takes about one-and-a-half to two hours. They may want your child to fall asleep during the test so they can record sleeping brain waves. Another bit of advice is to wash your hair the night before and not use any conditioners or products in their hair so the glue sticks better; so no hairspray or gel. #### Does an EEG hurt? No, You’ll feel little or no discomfort during an EEG. The electrodes don’t transmit any sensations. They just record your brain waves. #### Who is suited for an EEG? Anyone; An EEG is one of the main diagnostic tests for epilepsy. An EEG may also play a role in diagnosing other brain disorders, no matter the age or gender. #### More information For more information visit our page on [epilepsy diagnostics](http://http://livingwellwithepilepsy.com/diagnosis). ![author avatar](https://secure.gravatar.com/avatar/5523d28ae8bbaedc9d082d51d29393ca490379cd31464b99ab3c7d50a49362ac?s=300&d=mm&r=g) Emily Lawrence (Nee Donoghue) 25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England. Emily's Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10. Based in UK. [See Full Bio](https://livingwellwithepilepsy.com/author/emilyd) [ ](https://livingwellwithepilepsy.com/author/emilyd) **Categories:** Emily's Perspective --- ### [Epilepsy Blog Relay: Former Christian Fundamentalist on Epilepsy and the Bible](https://livingwellwithepilepsy.com/epilepsy-stories/former-christian-fundamentalist-on-epilepsy-and-the-bible.html) **Published:** March 21, 2019 **Author:** Elaine Reeves **Excerpt:** Elaine, a former Christian Fundamentalist, looks at epilepsy and the bible. She reminds us that throughout history epilepsy has been viewed by Western religious institutions as caused by demon possession. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/03/Elaine-300x300.png "Elaine – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2019/epilepsy-blog-relay/mar-19-ebr-posts/former-christian-fundamentalist-on-epilepsy-and-the-bible.html/attachment/elaine)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) ***which will run from March 1 through March 31. Follow along!*** #### Epilepsy and the Bible For most of its long history, epilepsy was, and sometimes still is, viewed by Western religious institutions as caused by demon possession. The Biblical connection between epilepsy and demon possession is based on a passage from the New Testament, Mark 6:13. There are other passages in Matthew 17 and Mark 9 that are also cited as proof that epilepsy is a demonic possession. I find it surprising that this interpretation of scripture is still in use, but by doing a Google search on the words “bible verses about epilepsy” I found a number of websites that provide detailed information about how to interpret Bible verses to prove that epilepsy is caused by demon possession. There are also a number of online training courses available that offer classes on how to stop seizures using scriptural authority and prayer to cast out demons. The websites I found are current and in use as of now, 2019. --- #### Read more stories by Elaine [Suicide and the stigma of epilepsy](https://livingwellwithepilepsy.com/2018/aboutepilepsy/stigma/suicide-and-the-stigma-of-epilepsy.html) [Using poetry to cope with TLE](https://livingwellwithepilepsy.com/2018/guest-posts/poetry-to-cope-with-adversity-and-a-life-with-tle.html) --- #### When outdated ideas threaten health The language in the Bible verses that are said to be useful for stopping seizures is disturbing to me because it describes people with epilepsy as having a “foul spirit,” a “dumb spirit,” a “deaf spirit” (Mark 9), “unclean spirit,” (Luke 9). It is not clear to me that any of these New Testament verses are an accurate description of epilepsy or ever were. The writers of the Gospels wrote in good faith with the knowledge that was available at the time, but new knowledge is available now. I do not have a foul, dumb, deaf, or unclean spirit. I have a medical condition that can be addressed by knowledge gained from current medical research. To deliberately persist in using ineffective, outdated ideas about casting out demons as a substitute for effective medical care is irresponsible and unethical. Steven Waterhouse is a Christian minister with experience in helping families understand how to apply Bible verses in a compassionate way that combines both Bible truth and medical treatment without casting out demons. In his book, Strength for God’s People, Waterhouse writes, “Through ignorance of medicine, clergy and church members run the risk of misapplying the Bible and harming innocent people in the process. Theologians, ministers and church members must understand a human problem accurately before applying the Bible to it. Failures to understand medical problems can lead to blunders in ministry.” #### Truth that matters When I was a Christian fundamentalist, I took the Bible literally word for word believing that all that mattered was the “truth” of God’s Word. I believed that as long as I was in God’s “truth,” I was OK. As a result of the life disruptions that I experienced because of a lack of accurate medical diagnosis for epilepsy, I began to learn that sometimes the only “truth” that matters is my “truth.” Using my own eyes and ears and not the lens of distorted Bible verses taken literally, I learned to not be afraid of being punished by God for seeking help from “secular” doctors and medicine. When I learned that I had a medical condition my mind was healed from the fear that I was sinful and being punished by God for leaving God’s “truth.” Then my body could heal, too. #### A Proposal for Healing An exaggeration of fear finds harmony in An exaggeration of beauty. Unsettled restlessness can learn to Rest by the green springs of wine and hope. Deathly terror can learn to Drink flowing waters and live. Broken trust can understand that The wise and healing mother bakes bread. The voiceless void of regression can produce one sound- “I am not forsaken, I am not alone.” My leaden body, filled with doubt and dread, Will dance beyond gravity transcending the clouds. An exaggeration of fear finds harmony in An exaggeration of beauty. ***by Elaine M. Reeves*** --- ***NEXT UP:*** Be sure to check out the next post by Stephen at [livingwellwithepilepsy.com ](http://livingwellwithepilepsy.com)for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay posts](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) you may have missed. [Share your story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://secure.gravatar.com/avatar/5d4261955d4ceff56cc67b1a40b7c2203bf696f43b3fd37045328526cd56ff6e?s=300&d=mm&r=g) Elaine Reeves [See Full Bio](https://livingwellwithepilepsy.com/author/ereeves) [ ](https://livingwellwithepilepsy.com/author/ereeves) **Categories:** Epilepsy Stories, Mar 19 EBR Posts --- ### [My Journey with Epilepsy as a Young Adult: Keep Pushing and Stay Strong!](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-as-a-young-adult-keep-pushing-and-be-strong.html) **Published:** July 5, 2021 **Author:** Guest Contributor **Excerpt:** Brooke share her experience living with epilepsy as a young adult: I love to run, read, write, explore, take pictures and try new things. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/03/m_5976b5c031baf2a42006ca95-300x300.jpg "m_5976b5c031baf2a42006ca95 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2021/03/m_5976b5c031baf2a42006ca95.jpg)Brooke’s Story A few things about me: I graduated from Texas A&M University with a Bachelors in Political Science in 2019; I am living with epilepsy as a young adult; I love to run, read, write, explore, take pictures and try new things: (get myself out of my comfort zone- because I’ve never really known comfort). I just keep pushing and try to stay strong. #### Epilepsy as a Young Adult I want to share my story with all of the young adults out there who are struggling. I have been battling epilepsy for over 10 years; juggling school, work, friends, relationships, my sorority, and representing Texas A&M as a counselor for transfer students. I now work for a non-profit mentoring college students and every day is different. I have always had an extremely difficult time focusing on my work/studies. Over time, I have tried out many different methods to help, and what I have personally found to be helpful for me are activities like running, yoga, photography, going on long walks, listening to podcasts, and painting. I also cut soda and fast food out of my diet, and I try to eat all natural foods; over time, I have found that this has helped me as well. #### Why epilepsy stigma I think that epilepsy is something that needs to be talked about more. Not many people talk or share their experiences with epilepsy. Why the stigma? #### Your turn Young adults who are struggling with school or finding a job I hope you will comment on your experience below. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Jun 21 EBR Posts --- ### [The good bad and ugly of epilepsy online support communities](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-online-support-communities.html) **Published:** July 4, 2021 **Author:** Hayley Jacobs **Excerpt:** Hayley shares her experience with epilepsy online support communities for those newly diagnosed, or just new to online support. **Content:** #### [![Hayley's epilepsy story](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/IMG_20201031_115142_978-897x1024.jpg "IMG_20201031_115142_978 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/IMG_20201031_115142_978.jpg)Hayley’s Story I wanted to take a moment to share my experience with online support communities. If you are newly diagnosed, or don’t use them already maybe my experience will help you understand more about what they can offer, how they can be accessed and also, how to avoid pitfalls. #### Telemedicine Firstly, I think that in these times of a non-contact or limited contact society, using online (and telephonic) support while you negotiate your own (or someone that you care for) journey with epilepsy has taken on an extra dimension of necessity. Many of us have experienced cancellation of face to face hospital appointments or limited access to everyday medical support and so, if you have been thrust unwittingly into the digital world to manage the medical element of your epilepsy, now is a great time to see what else is out there in terms of support from the wider epilepsy community. #### Epilepsy Charities and Organizations The first “tier” (because we know everyone loves a tier, yawn!) of these are the official charities and organizations. In Britain we have the Epilepsy Society and Epilepsy Action, both charities which provide excellent resources in terms of fundraising, research and offering contact with trained advisors who can talk to you about challenges you might be facing related to epilepsy. These include helping you understand how to access practical support (what accommodations the UK government makes to make life easier for people with epilepsy for example or how to make your home safer), offering a friendly ear if you are struggling with your mental health and, although they can’t offer medical advice, they can point you in the right direction of those who can. Organizations like [Living Well with Epilepsy](https://livingwellwithepilepsy.com) can also share information, articles from medical professionals and bloggers. These platforms are regulated and reliable, so you can use them safe in the knowledge that what you find is factually correct. They are a great starting point for learning more about epilepsy and separating fact from fiction. #### Epilepsy on Social Media The next element of the epilepsy support network I’d like to talk about is social media groups. There are a HUGE range of these across pretty much every platform and they cater for every element of epilepsy you can think of. In this sense they are great because you can reach out to people who know what you are going through because they are living it. They will understand in a way that the people living around you and even the most qualified neurologist out there will not. You can narrow your choices by field; type of epilepsy, gender (this isn’t as discriminatory as it might sound, lots of women suffer from epilepsy which is specific to their hormonal cycle so it make sense so have groups just for them…..there may also be groups just for men as well, I haven’t personally looked), specific activities and how epilepsy impacts them e.g. sport or employment. You can also join groups to share experiences with other parents of children with epilepsy if this is your specific need. I am a regular user of epilepsy social media pages. I use some for advice and support and some just for fun; for example I follow a lady on Twitter called [@EpilepticRuner ](https://twitter.com/EpilepticRuner)(RunAngieRun) who blows my mind. I found her when I was looking for advice about building stamina whilst taking anti-epileptic medication because I wanted to start running again and was finding it hard going. It terms of what she does there wasn’t really much that was relatable to me (she regularly runs 100km+ ultra-marathons despite having uncontrolled seizures and being on a big cocktail of medication) whereas I still haven’t made it back past a very sedately paced 10km (I used to be a reasonably good distance runner) and so I don’t draw inspiration from her as such, but I still like to see what she’s up to and what challenge she has set herself to complete next. Her own personal dedication is next level! #### The good When you’re feeling low (which is an inevitable part of dealing with epilepsy) social media groups are a great place for instant sympathy. I personally HATE the vast majority of motivational quotes but I know they help lots of people and occasionally one will pop up which will resonate with me, Instagram is awash with this kind of quick “pop in and get a virtual hug” type of support. The groups available via Facebook are more specific and as long as you can turn a polite blind eye to the “thoughts and prayers” which are always on offer if they aren’t your cup of tea, if you want to share your experiences in a closed forum these groups do act as free therapy, especially as there isn’t really much in the real world in terms of support for those suffering with long term medical conditions (same issue as previously mentioned, you can be the best psychotherapist in the world but until you’ve lived it, there are limits as to how well you can empathise with it). The people are usually nice, the groups are usually well moderated and perhaps most importantly they are easily accessible, so if you are bed/sofa bound and feeling sad and sore because you’re recovering from a tonic clonic or medication side effects you can still find someone to talk to. #### The bad I do however feel like I would be irresponsible to advertise these groups without explaining why they aren’t perfect, especially for people who are going through diagnosis or are new to epilepsy. It really and truly is almost like a whole set of cyber-safety rules should exist for medical support groups. Firstly, they are often global, which is great for always having someone available but, medical services, medications, laws regarding issues like driving and benefits and alternative therapies vary massively from one country, state and continent to the next so it is very important to understand that whilst someone can give you advice, it doesn’t necessarily meant the same thing will be applicable where you live. Take heed. Secondly, everyone’s experience with epilepsy is different, and whilst it can feel amazing to find someone who shares the same symptoms and has been prescribed the same medication as you (trust me, it really does feel unbelievable to find these people in your darkest hours when you feel totally lost and confused) you HAVE to keep this in perspective. It is a condition which can take random twists and turns at any point for no discernible reason and therefore you can easily set yourself up for a fall if you find a “kindred spirit” only to find out they are being weaned off medication in six months time or a candidate for the surgery you’ve begged for but been refused. I can also not stress strongly enough how important it is that you must NEVER take medical advice from any online social media platform. We might all share experiences and in some cases run professional epilepsy organisations but we are NOT trained neurologists and advice regarding medication and treatment should only come from YOUR doctor or nurse. #### The ugly Lastly, by nature, some of the topics are scary, and if you are feeling vulnerable, epilepsy social media forums aren’t always the best place to be. It’s very important that the profile of SUDEP (Sudden Unexpected Death in Epilepsy) is raised and if you or your loved one has epilepsy you SHOULD talk about your own risk factors with your medical practitioner but I fully appreciate if you just popped on to talk about period pain having your own mortality discussed is truly terrifying. People WILL also want to talk about their mental health and depression and anxiety, and sometimes by nature shared experiences can bring you down instead of up….all it takes is for you to be in the wrong mindset and a few people discussing their depression when you perceive their lot to be better than yours can send you on a downward spiral. In these instances I would advise, don’t leave the groups but do take a break, come away from social media and do something grounding and gentle. Learn to recognise when things are making you feel good and when they aren’t, know what you need to do to remove yourself from the situation. This is of course a huge advantage of online contact, I know it is addictive but it’s also not a physical room you are stuck in, you can just walk away at any time. #### Still worth it Despite all these things which you should be aware of, I am still a firm advocate of the online epilepsy community and I think it is definitely the best place to go to help normalise what you are going through. I can’t promise it’s the right path for everyone but in these, often lonely times I would recommend you try it, and experiment for find what works for you. My own condition is currently not fully controlled but it is stable and I am still a regular visitor. It’s nice to be in the position to be able to “pay it forward” and help others who are beginning their journey, offer reassurance and to share in other people’s victories, no matter how small. It’s not a community any of us chose to be in, but since we are all stuck with it, there isn’t any need for it to be a storm you weather alone. ![author avatar](https://secure.gravatar.com/avatar/bb67b1e45d0e80a2c87ad47e6bebcb92c477042f0211c4104141de3fe2b83507?s=300&d=mm&r=g) Hayley Jacobs [See Full Bio](https://livingwellwithepilepsy.com/author/hayleyj101) [ ](https://livingwellwithepilepsy.com/author/hayleyj101) **Categories:** Epilepsy Stories, Jun 21 EBR Posts --- ### [On explaining epilepsy to peers](https://livingwellwithepilepsy.com/epilepsy-stories/on-explaining-epilepsy-to-peers.html) **Published:** July 3, 2021 **Author:** Guest Contributor **Excerpt:** Being an individual living with epilepsy, the one question I get a lot is, “What is epilepsy?” The scientific definition is a chronic neurologic disorder with many possible causes including illness, brain damage, or abnormal brain development. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/IMG-20171117-WA0025-1-225x300.jpg "IMG-20171117-WA0025 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/IMG-20171117-WA0025-1-e1605407704928.jpg)Lisa’s Story Being an individual living with epilepsy, the one question I get a lot is, “What is epilepsy?” The scientific definition is a chronic neurologic disorder with many possible causes including illness, brain damage, or abnormal brain development. A seizure is a sudden surge of electrical activity in the brain. Seizures can cause strange sensations, emotions, and behavior. Seizures can also cause convulsions, muscle spasms, and loss of consciousness. Every time I get this question, I am faced with how to explain something I have struggled to understand my whole life. I have, however, thought of a definition that is **less demeaning to me** and easier for the public to understand. Epilepsy is simply fighting you for you. I chose this phrase because, from personal experience, that is how it feels. During a seizure, my pain is so intense and real that I fight for it to end. Yet the more I fight, the more prolonged it is. The experts say to let the seizure take its course, but it is easier said than done. Fighting you for you goes beyond the seizure itself. I have to fight different factors that may possibly cause my epileptic seizures. These range from diet change, being emotionally hyped, a change of environment, an infection, a simple pollination of flowers, anti-epileptic drugs, and–the most difficult and unavoidable–my monthly cycle. My first seizure happened when I was still a baby, but they classified it as a convulsion and told my parents I would grow out of it when I got to a certain age. Well, that did not happen and when they got worse, I was put on medication. From age 11, my family moved a lot due to my dad’s different work postings, and we eventually settled in Zimbabwe. I had a neurologist in South Africa who monitored my progress and said I was faring well and reduced my anti-epileptic drugs, but **my health deteriorated again.** This had both a physical and psychological effects on me, and I felt like I had failed at accomplishing a goal. While the seizures were getting the best of me physically, the emotional bullying had its fair share of negative effects on me psychologically. I decided that going to school was not an option for me, as it was a reminder of my abnormalities. My parents somehow convinced me to go back to school. I had no friends, and people thought epilepsy was contagious or that witchcraft magic had made me the way I was. I went through high school feeling lonely with just a handful of friends who–to some extent–understood my condition. We moved back to my home country, Kenya, where I finished high school studying under the Accelerated Christian System. Yet things were the same as in Zimbabwe. Same reaction and same treatment. I joined University in 2017, and I was determined that it was a fresh start for me. No one knew of my condition and therefore I fit in nicely. Initially I was very reserved about my epilepsy, determined to be “normal.” My first year and a half of university, I would get sick and have serious injuries because I did not want anyone to see that side of me. As time went on, I became more outspoken but have still been met with adversity. I have encounters with professors telling me I faked my condition so as to skip class or not do tests. I have memory loss issues and also understand concepts slower on certain occasions, but it is hard to “prove” this. When I told more people, many already knew and, of course, asked questions. My friends have been helpful when I had the seizures and put in the effort to make sure I get the help I need. The medical team has also been helpful when called upon. Now I’m in my last year of University and though I have been through a lot, those experiences have positive factors to take from them. I still do have seizures, but living well with epilepsy is a goal I hope to achieve. I am working with my neurologist to see what anti-epileptic drugs work best for me. I also recognize that the experts can only do so much and it is upon me to do my part. **Seizure Strategies** 1. Stress is a major problem for me. I can’t live with it, and can’t live without it. In order to be able to control stress and minimize spin cycling in my mind, I have a list of do’s and don’ts to help me cope better with stress. Working off stress with physical activity or recognizing when you are tired and resting are some pointers. 2. Memory loss (brain fog) and short concentration span is another problem for me. I use sticky notes and phone reminders to try **curb it.** Eating right also contributes a whole lot when it comes to mental clarity. A healthy diet is beneficial both physically and mentally. 3. Having a seizure pre, during, and post plan is key because it helps the people around you to know what to do and not to do. Having a support system of family and friends is crucial because you don’t have to worry about being in safe hands. 4. The most key thing to do is communicate with your neurologist. It is important that you let him/her how you are faring on and how your AEDs are treating you because there are many other modes of treatment. If you feel the neurologist is the problem, then find a new one. Never self-medicate as the interactions may have negative effects. Am not an expert but these are just personal experiences that I am sharing with hopes that they will help others and let them know that we all have a story to tell and we are perfect in all our imperfections. Even though I may feel like a burden because I get seizures and can’t do some “simple” things, I am reminded that every person is differently abled. It is hard up to date to explain epilepsy because people are unfortunately still uneducated on the matter. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** About Epilepsy, Epilepsy Stories, Jun 21 EBR Posts --- ### [When embracing cowardice shows bravery](https://livingwellwithepilepsy.com/epilepsy-stories/when-embracing-cowardice-shows-bravery.html) **Published:** July 2, 2021 **Author:** Lainie Chait **Excerpt:** Just because I appear brave doesn't mean that I'm not hiding a coward inside that I'm now prepared to admit and take responsibility for **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/02/blog-relay-small-edit.jpg "blog-relay-small-edit – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2021/02/blog-relay-small-edit.jpg)I had a friend reflect the other day about the one thing that she admires most about me. She said it was my bravery. “You’re very brave” she said “I’ve always admired that about you” “you never seem afraid to take life on.” As much as I was touched and even squirted a few tears (well as many as being on meds would allow due to it suppressing emotions), my first response to her was “As brave as I am, I am also the polar opposite of that, I am a coward too.” My friend didn’t get it at first until I mentioned the concept of polarity, which she knew about. If we are one thing, then we are most certainly the opposite of that as well. #### Ways I Show Bravery 1. I wasn’t prepared to just accept my epilepsy diagnosis and take meds all my life. This led me to research and experiment with other ways to treat and manage my brain until I found a management plan that I was/am in charge of now and not the doctors telling me what’s best for me. 2. I looked at my shadow side early on when I decided to take myself off all meds and found out what were my triggers and why my seizures occurred rather than looking at external tests like MRI’s and EEG’s. (this is a brave move and one that I’m not condoning unless you have the right support network). 3. I’m constantly changing things when I’ve outgrown them and moving on instead of staying in a situation that I’m not happy in or stressed with. (to be honest, I’m getting too old for that though so rethinking this) 4. I wasn’t prepared to let epilepsy stop me from doing anything I wanted to do so I wrote and self-published a book about my life living with epilepsy and then starred in a stage show which I wrote based on the book. #Electogirl #### Ways I Show Cowardice Just a side note here first though. This is the first time in the last 30 years that I have come to this realisation and the first time EVER I’m about to write or say these thoughts to anyone. Full on live feelings right here, right now…. here we go, the reasons I’m a coward (so be kind in the comments!!) 1. I was too ashamed to let my family know what was going on with me when I was a teenager, so I hid my symptoms and went through it alone for 3 years. 2. I was too egotistical to just accept that I had epilepsy, so I hid it for many years for fear of rejection from others. 3. I focused too much on what others would think and not about the damage I was doing to my mental health and self-worth because of this. 4. I tried to run away from myself thinking if I changed my surroundings my problems would disappear, but they never did because the source of the issue was within me. This running affected people I loved and left them in my wake. #### Facing the Truth Some might read this and think that I’m being hard on myself, but I can tell you now, when you face the truth, damn straight it’s gonna be hard but the freedom and reward on the other side is phenomenal. I am not beating myself up about being brave or being a coward, I am purely facing myself in the mirror and accepting that I am both and it’s now time to meet in the middle and just be me. Non dualistic me that only wants to live in and from my heart centre now because the struggle to hide having grand mal seizures nearly defeated me! Respect to all of you who have gracefully accepted your diagnosis and are taking positive steps to manage it holistically. ![author avatar](https://secure.gravatar.com/avatar/6741f205abb236e76a0cbb8b5f2273ea5186a2e0f7714f7742a457fe0a89a5d0?s=300&d=mm&r=g) Lainie Chait [See Full Bio](https://livingwellwithepilepsy.com/author/lainie) [ ](https://livingwellwithepilepsy.com/author/lainie) **Categories:** Epilepsy Stories, Jun 21 EBR Posts --- ### [Epilepsy Blog Relay™: Connecting with others](https://livingwellwithepilepsy.com/epilepsy-blog-relay/jun-16-ebr-posts/epilepsy-blog-relay-connecting-others.html) **Published:** June 8, 2016 **Author:** Lainie Chait **Excerpt:** I used to have a block against connecting with people that had Epilepsy. These days I'm more accepting of my Epilepsy and I've found people who understand. **Content:** [![13128816_10153893324537034_1511244657_o](http://livingwellwithepilepsy.com/wp-content/uploads/2016/05/13128816_10153893324537034_1511244657_o-200x300.jpg "13128816_10153893324537034_1511244657_o – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/portfolio/jun-8-lainie-chait/attachment/13128816_10153893324537034_1511244657_o)*This post is part of the [Epilepsy Blog Relay™](http://livingwellwithepilepsy.com/epilepsy-blog-relay) which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!* #### Lainie’s Story I used to have a real block against connecting with people that had Epilepsy especially on forums which seemed to be the only method of connection. I didn’t want to be associated with it at all and certainly didn’t want to talk with anyone that had it for some reason. Twenty five years ago when I was diagnosed and to this day as well, there were/are no real time support groups in the city where I live that run on a weekly basis so that people can have a face to face chinwag about the fun, the freaky and the frightening in relation to their Epilepsy condition. There is a foundation and friendly people there but when I asked about groups that get together, the answer was “we don’t really do that, there is the forum for that” I find this very odd and am planning to do something about this soon. When I did get over my judgements briefly and try to get on a forum, all I was reading and seeing were conversations about bad seizures and lots of medication, side effects, relying on doctors solely and victim stuff. This made me shy away from the forums in a real hurry and as I made the connection that people on the forums with Epilepsy, are people that are sick. I didn’t want to associate with that label so I let the whole concept go. In all honesty though, when I was 19 and newly diagnosed, any connection would have been a negative one. What I didn’t factor in was that amongst the negatives of associating with people that had Epilepsy, there would also have been the positives of associating with people that had Epilepsy. I have compiled a list of positives and negatives as I have seen it over the past 25 years relating to making connections. #### Negatives of connecting 1\) Some people are happy to be labelled as an Epileptic and have Epilepsy rule their daily existence which looked through my lenses like playing the victim role and I didn’t have time for this mindset. 2\) There is way too much emphasis on doctor’s and pharmaceutical treatment being the only way and people can get defensive when you question what their comfort zone is based on. 3\) The forums were the only way people could connect (as I have gotten older and the interweb has made connecting easier I can now see the benefit of the forums to bring people together from different countries). 4\) If I reached out to people then they would know I had Epilepsy and I was doing a damn fine job of hiding it #### Positives of connecting 1\) You don’t have to explain what Epilepsy is to someone that has it and that is liberating, no talk of what to do, how to do it, what happens after, before etc. 2\) When there is talk of aura’s, strange smells, sights, sounds before a seizure you are totally aware of what they are talking about and can relate in a very empathetic way. 3\) There is a camaraderie of awareness around conversations to do with coping strategies around having seizures, almost like listening in to a foreign language if you weren’t familiar with the jargon. 4\) You can share your “wins” with people that are rooting for you even if they don’t know you personally. They know the mighty E and how debilitating it can be. These days I am, much more advanced in my acceptance of having Epilepsy and I am on the web trying my best to find people who have the same approach to my way of managing my seizures. Nowadays, I feel like I have something to offer of merit and worth to other people living real time with Epilepsy. There is so much on Epilepsy now [on the Internet](https://www.facebook.com/electrogirly). So many places for people to be part of a tribe, to have their say, to share their triumphs and to encourage others with their stories. It’s very exciting. **NEXT UP:** *Be sure to check out the next post tomorrow at for more on Epilepsy Awareness. For the full schedule of bloggers visit [livingwellwithepilepsy.com](http://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-jun-2016-participants).* **DON’T MISS IT:** *Don’t miss your chance to connect with bloggers on the #LivingWellChat on June 30 at 7PM ET.* --- #### About the Author My name is Lainie Chait, I was diagnosed with Epilepsy in 1991 at age 19. Electro Girl was birthed at the same time in order to find my inner strength to deal with a condition that is still to this day, eluding practitioners. Electro Girl is now coming out of the book and in to real time in order to use the knowledge and resources that I have found over the years and share with others for their own empowerment. ![author avatar](https://secure.gravatar.com/avatar/6741f205abb236e76a0cbb8b5f2273ea5186a2e0f7714f7742a457fe0a89a5d0?s=300&d=mm&r=g) Lainie Chait [See Full Bio](https://livingwellwithepilepsy.com/author/lainie) [ ](https://livingwellwithepilepsy.com/author/lainie) **Categories:** Jun 16 EBR Posts **Tags:** Epilepsy Blog Relay --- ### [COVID and our Epilepsy Superheroes](https://livingwellwithepilepsy.com/epilepsy-stories/covid-and-our-epilepsy-superheroes.html) **Published:** June 3, 2021 **Author:** Beth Schill **Excerpt:** As our world has dealt with the reality of being confined to home due to COVID - many of us felt the pressure in unique ways. But perhaps those of us with epilepsy also found some freedom. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2015/05/BethSchill-300x300.jpg "BethSchill – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2015/05/BethSchill.jpg)***This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay) which will run from June 1 to June 30, 2021. Follow along!*** Well, much like everything else in this past year, I had every intent of being ahead of the game for the Epilepsy Blog Relay. I had a draft outline in February. And then, like so much, life happened. I was hit by a major migraine earlier in the month (yay epilepsy comorbidities), heightened stress at work (huzzah for endless Zoom calls), and then my two littles were excluded from school due to a potential exposure to a COVID positive person. And just like that it is the end of the month, and well, here we are in June. But this spring is a perfect parallel for our year with COVID, and for many of us, our daily lives with epilepsy. In a post a number of years ago, I referred to [having epilepsy as being akin to having a special superpower](http://anthrosuit.blogspot.com/2020/07/in-honor-of-ada30-reposting-reflection.html). In that blog, I finished by reflecting on what those of us with invisible disabilities, or our caretakers, can teach our over-harried, type A, success-obsessed culture. This past year has brought those reflections into even more prominence. #### What to keep As our world dealt with the reality of being confined to home, many of us felt the pressure in unique ways. But perhaps we also found some freedom. I, for one, found that I was finally able to get the right amount of sleep (even with a baby). Having the flexibility of a schedule at home has meant that I am perhaps more rested than I have been in a long time. And this is something I’ve want to keep going when I do return to a physical office. Slowing down has also brought perspective on how much I say “yes” to, even when I shouldn’t. This has always been my most challenging part of having epilepsy. I am a social person. I love being with others. I overcommit my schedule. And even though many things in day-to-day life bring me great joy, it also wears me out. Physically, I can feel my brain being overstimulated when I don’t take time for quiet. In years past, busy work schedules combined with other social obligations often led to me being more stressed and more prone to seizures and auras. This past year gave me the ability to press pause on all of that. Granted, in some ways trying to work from home with two littles provided a different type of stimulation, it also eased the tempo and brought new opportunities to my life. When things start to return to normal, there’s no doubt that I will be overjoyed at seeing family and friends, and embracing those who mean so much to me. But I hope that my family unit can keep hold of the slower pace and recognize the health it brings. #### Broadening perspectives On a more advocacy-related note, this past year has brought up many important (and overdue) conversations around health, wellness, work life integration, and even what does it mean to be in different levels of wellness. If you don’t already, I highly recommend following [Alice Wong](https://twitter.com/DisVisibility) and [Matthew Cortland](https://twitter.com/mattbc) on social media. Both individuals are incredible writers and have some great reflections on being disabled and what it means with COVID-care, receiving vaccines, and more. #### What to leave behind In short this year has amplified the arguments and realities that many of us have had for years and brought issues into a more public, and dare I say, acceptable milieu? Business gurus, and Fortune 500 thinkers, and organizations from McKinsey, to Gartner, to Inc, the Washington Post and more are now talking about the importance of wellness. And not just you-get-gym-membership-as-a-work-perk wellness (though that is not bad), but having the deeper questions. Why do we work the hours we work? Why are we success-oriented? What if we could work differently? What if we do work from home since we’ve proven we can? I believe that as advocates for those with epilepsy, we take part in these national conversations. It is really a unique time to help make arguments for changes that enable us all to have a more healthy lifestyle. And in the meantime, for all of us, I think we should take some time and reflect (in whatever way is most meaningful) on just what we have done over the past year. If you have somehow managed to keep your head above water, balancing a condition like epilepsy, with everything else, then I take my hat off to you. We really are superheroes. ### Share your COVID/Epilepsy experience in the comments below ![author avatar](https://secure.gravatar.com/avatar/019aba9862d7ad91ebced6b9ab4e84078d26f372cca0f898dbbacb8629df70a2?s=300&d=mm&r=g) Beth Schill [See Full Bio](https://livingwellwithepilepsy.com/author/beth-s) [ ](https://livingwellwithepilepsy.com/author/beth-s) **Categories:** Epilepsy Stories, Jun 21 EBR Posts **Tags:** COVID, covid-19 --- ### [Epilepsy gifts that make an impact](https://livingwellwithepilepsy.com/epilepsy-news-and-research/epilepsy-gifts-that-make-an-impact.html) **Published:** December 10, 2010 **Author:** Jessica K. Smith **Content:** #### [![](http://livingwellwithepilepsy.com/wp-content/uploads/blogger/_E8vqQ--lvIQ/TQLevZf_TsI/AAAAAAAAAKQ/dOD2ipGQP2g/s200/epilepsy%2Bholiday%2Bgifts1.jpg)](http://livingwellwithepilepsy.com/wp-content/uploads/blogger/_E8vqQ--lvIQ/TQLevZf_TsI/AAAAAAAAAKQ/dOD2ipGQP2g/s1600/epilepsy%2Bholiday%2Bgifts1.jpg)Epilepsy Gift Guide During this season of holiday parties and gift giving, I thought it would be fun to see what’s available in epilepsy gifts. I was surprised to find that there are many options for contributing to the cause and increasing awareness by way of a holiday gift. [![](http://livingwellwithepilepsy.com/wp-content/uploads/blogger/_E8vqQ--lvIQ/TQLYQyTihXI/AAAAAAAAAKI/dxiG-3oTqfg/s200/livingwellwithepilepsy%2Bshirt.jpg)](http://livingwellwithepilepsy.com/wp-content/uploads/blogger/_E8vqQ--lvIQ/TQLYQyTihXI/AAAAAAAAAKI/dxiG-3oTqfg/s1600/livingwellwithepilepsy%2Bshirt.jpg)Since everyone loves to open a gift, I thought it made sense to start with the things that can be wrapped. There are several sites that offer epilepsy awareness shirts, caps and other merchandise. Two of my favorites are [Zazzle](http://www.zazzle.com/epilepsy+gifts) and [Cafe Press](http://shop.cafepress.com/epilepsy). To the right you’ll see a shirt that can be found on these sites. If you are looking for a gift that makes more of a direct impact, you’ll find that many organizations welcome donations as gifts. In fact, the [Epilepsy Foundation](https://secure2.convio.net/efa/site/Donation2?df_id=1774&1774.donation=form1) has set up a way to send a card to let your friend or family member know a gift has been made in their name. And, if you want to contribute to your local epilepsy organization but don’t know where to find them, start by following me on [Twitter](http://twitter.com/#%21/jessicaksmith). Check out the organizations I’m following and you will find many of the epilepsy organizations throughout the world. Know of other great gift ideas? Just leave a comment below. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. 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](https://linkedin.com/in/) **Categories:** News and Research --- ### [Epilepsy Blog Relay: Story of a mother and son with epilepsy and autism spectrum](https://livingwellwithepilepsy.com/epilepsy-stories/mother-and-son-with-epilepsy-and-autism-spectrum.html) **Published:** June 28, 2018 **Author:** Audra Sisak **Excerpt:** Audra, who writes Our Life With Autism, shares the life and adventures of mother and son with epilepsy and autism spectrum. **Content:** **[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/03/IMG_2587-300x300-300x300.jpg "IMG_2587-300x300 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/home/attachment/img_2587-300x300)This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from June 1 to June 30, 2018. Follow along!** #### Audra’s Story [Our Life With Autism](https://ourlifewithautismsite.wordpress.com/) shares the life and adventures of mother and son with epilepsy and autism spectrum! He’s The Boss and I’m just Momma Employee where he does most of scheduling for me. #### Excerpt from post The top 5 popular [epilepsy drugs](https://livingwellwithepilepsy.com/2018/aboutepilepsy/treatments/fda-approves-epidiolex-first-medication-derived-from-marijuana.html) and their [side effects](https://livingwellwithepilepsy.com/2018/aboutepilepsy/adjusting-to-a-medication-change.html). How this feels and what it looks like, especially for an autistic person. A sneak peak into our daily routine. [Read more](https://ourlifewithautismsite.wordpress.com/) --- **NEXT UP:** Be sure to check out the next post by Shonet at . **TWITTER CHAT:** Save the date for the #LivingWellChat on June 30 at 7PM ET. [![epilepsy blog relay](https://livingwellwithepilepsy.com/wp-content/uploads/2018/05/june-2018-social-EBR1-150x150.png "june 2018 social EBR(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-participants/attachment/june-2018-social-ebr1)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our [generous sponsors and partners](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-sponsors-and-partners)! [Participate as a November Blogger ](http://bit.ly/Nov18EBRForm) [Become a November Sponsor ](http://bit.ly/1819EBRMk) ![author avatar](https://secure.gravatar.com/avatar/b21a0aa498334f5594b605bcb69144d40cce7b2037684d4b246b1590d7b07d35?s=300&d=mm&r=g) Audra Sisak My name is Audra (Momma Employee) and I have a son The Boss. We are both autistic and have epilepsy! We are both trying to navigate this complex world, together. He runs my schedule and we experience love and life as one family. Our journey comes with ups and downs, but it’s our lives. Welcome to our crazy, funny, weird, socially awkward, introverted, anxiety-ridden, happy, joyful page!We are both supportive of neurodiversity! Momma Employee- QASP, CAS, BCCS, Freelance Writer, Advocate. I love working with my community! I support SCERTS model, DLT model, and therapy to include CBT/ACT. [See Full Bio](https://livingwellwithepilepsy.com/author/audrasisak) [ ](https://livingwellwithepilepsy.com/author/audrasisak) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/2015hlwa/) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://2015hlwa1) **Categories:** Autism and Epilepsy, Epilepsy Stories, Family, Jun 18 EBR Posts, Side Effects **Tags:** ASD, autism --- ### [Important Topics to Discuss at Your Next Medical Appointment](https://livingwellwithepilepsy.com/epilepsy-blog-relay/important-topics-to-discuss-at-your-next-medical-appointment.html) **Published:** November 12, 2020 **Author:** Jessica K. Smith **Excerpt:** Have you ever left your doctor’s appointment and realized that you forgot to ask some important questions? For people living with epilepsy, speaking up is key to creating a true partnership with your neurologist or epileptologist to help achieve your personal and health goals. However, many people still struggle to have real, open conversations about their seizures. The Seize the Truth About Epilepsy Perceptions (STEP) Survey* revealed just how often disconnects can occur between doctors, caregivers and people with epilepsy – and why this needs to change. **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/shutterstock_1683359032-1024x683.jpg "shutterstock_1683359032 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/shutterstock_1683359032-scaled.jpg)*** ***This blog post was submitted by SK Life Science, Inc., the lead sponsor of the November 2020 Epilepsy Blog Relay.*** As many of you are aware, even today, people living with epilepsy can face stigma and discrimination due to their seizures, and many feel their seizures have a negative impact on overall quality of life. 2 Productive and honest discussions about epilepsy have become even more important during the COVID-19 pandemic, as social distancing requirements have limited in-person medical visits. Whether it’s virtual or in person, here are some important tips to guide your next discussion with your doctor. **1. Explain the reason for your visit.** Is this a checkup, or is there something specific you need to address? Without this information, your healthcare provider (HCP) may not have the full picture and can’t provide the help and guidance that is needed. ***Why it’s important:*** According to the [STEP Survey](https://www.sklifescienceinc.com/pdf/New_National_Epilepsy_Survey_Reveals_Significant_Disconnect_on_Important_Issues.pdf), 65% of patients and 63% of caregivers say a seizure event triggered a visit to the doctor, while only 25% of HCPs believe a visit is triggered by a seizure event. 1 **2. Record and report the number of seizures you’ve had since your last visit.** HCPs need the real numbers to ensure you get the best possible care and have the right treatment plan in place. Keep a log of all seizures to bring to your next visit. ***Why it’s important:*** While 73% of HCPs and 83% of caregivers believe patients report a high percentage of their seizures, patients actually say they report only 45% of seizures, according to the survey. The primary reason for not reporting them? Patients say the seizures weren’t serious enough to mention, or they just forgot. 1 **3. Ask any questions you have about your current treatment or other options you may want to explore.** You are in charge of your health, and gaining information about epilepsy will empower you to make decisions about your own care with your HCP. Write questions down ahead of your visit, and ask follow-up questions as needed. ***Why it’s important:*** 97% of HCPs say they explain the benefits of the treatment they recommend to their patients, but only 41% of patients and caregivers say their HCPs do so, according to the [STEP Survey](https://www.sklifescienceinc.com/pdf/New_National_Epilepsy_Survey_Reveals_Significant_Disconnect_on_Important_Issues.pdf).1 **4. Describe how seizures have interfered with your everyday activities and the overall emotional impact of living with epilepsy.** Living with epilepsy has a real emotional impact. In addition, seizures can affect how you work, drive, do schoolwork or chores. Make a list of your concerns ahead of your visit. If your HCP fully understands the challenges you’re facing, they can provide better care based on your needs — and help you find the right tools, resources and services. ***Why it’s important***: According to the survey, most people with epilepsy just want to feel “normal.” Yet in the [STEP Survey](https://www.sklifescienceinc.com/pdf/New_National_Epilepsy_Survey_Reveals_Significant_Disconnect_on_Important_Issues.pdf), 58% of caregivers and 47% of patients have had to take time off work due to epilepsy, and over half of patients feel it is disruptive not being able to drive. Approximately 80% of patients and caregivers reported feeling some form of isolation due to epilepsy, and over half of patients reported a very or extremely negative impact of epilepsy on physical, financial and mental/emotional health.1 **5. Share your real-life goals with your healthcare team.** Whether it’s wanting to start a family, live on your own or drive a car, by explaining your personal goals to your HCP, you can partner together to work toward achieving them. ***Why it’s important:*** In the [STEP Survey](https://www.sklifescienceinc.com/pdf/New_National_Epilepsy_Survey_Reveals_Significant_Disconnect_on_Important_Issues.pdf), 81% of HCPs somewhat or strongly agreed that patients don’t communicate their real-life goals to doctors — while less than 50% of patients somewhat or strongly agreed. 1 To make the most out of the next doctor’s visit, download a helpful guide (available [**here**](https://www.xcopri.com/pdf_file/english_steps_tool.pdf/)) for your discussion with your doctor. **\*About the STEP Survey** SK Life Science, Inc. engaged Kantar Health to develop and field a 40-minute online survey of 400 adult patients with epilepsy and 201 caregivers of adult epilepsy patients, and a 45-minute online survey of 258 healthcare providers (including 96 epileptologists, 112 general neurologists and 50 nurse practitioners/physician assistants). 1 The study was fielded from February 7 to March 27, 2019. 1 For more information about SK Life Science, Inc., please visit [www.sklifescienceinc.com](https://www.sklifescienceinc.com/). #### REFERENCES \[1\] SK Life Science, Inc. and Kantar Health. “Seize the Truth about Epilepsy Perceptions (STEP) Survey.” February 7, 2019 to March 27, 2019. \[2\] World Health Organization, Epilepsy Fact Sheet. https://www.who.int/news-room/fact-sheets/detail/epilepsy (https://www.who.int/news-room/fact-sheets/detail/epilepsy). Accessed October 6, 2020. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Blog Relay, SKLifeScience **Tags:** STEP Survey --- ### [5 Ways Epilepsy is Life-Changing plus 5 Tips to Make it Easier](https://livingwellwithepilepsy.com/epilepsy-stories/5-ways-epilepsy-is-life-changing-plus-5-tips-to-make-it-easier.html) **Published:** March 14, 2021 **Author:** Guest Contributor **Excerpt:** Avi shares 5 tips to make living with epilepsy easier from her own personal experience. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/02/myimage.jpeg "myimage – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2021/02/myimage.jpeg)During School, College, Job and many times in my life- I have been asked, “Ohh what did you say, You are Epileptic, I am so sorry to hear that, but I don’t know what it means.” This blog is an attempt to answer that query from the perspective of someone who lives with it. The motivation is to help bring awareness about this disease that affects around 65 million people worldwide including me. But sadly is not TALKED about. #### Avi’s Story I had my first seizure, when I was just 3 months old. The only symptom – I didn’t Blink for a full two minutes. My mother noticed that something was amiss. She rushed to a neighbour’s place wondering what had happened to me. However, by the time she took me in her arms, and reached their place in a panic mode, I had recovered. Thus, the very first episode was ultimately dismissed lightly. But, then the seizures became very frequent; sometimes occurring twice a day. My parents were scared, they feared whether I would be able to survive and thrive in this world. They did all that a parent could do – studied about the disease, joined clubs and forums, discussed with relatives and well wishers and reached out to all doctors they could contact. They also tried various alternative treatments- homeopathy, ayurveda, home remedies even took me to an ashram in Rishikesh. I was being fed all kinds of medicines, home remedies, parents took a variety of opinions- from mystics, to doctors and relatives. But it took some time and 20+ such seizures, before I was properly diagnosed with Epilepsy. Yet, even after the diagnosis, CT Scans and MRI’s and various medicine prescriptions – still, nothing worked. #### Keeping a Diary My mom started keeping a record of all the symptoms, date and times of all the seizures. Most of them were febrile in nature, that implies that they were preceded by fever. Needless to say, my parents would freak out every time I caught cold or fever. Food items, kids of my age enjoyed- Icrecreams, soft drinks, junk food were BANNED in our house. Over the years, different doctors eventually found medicines that would manage my seizures and side effects. #### Living the NORMAL+ life Because of my parents and family, I was able to lead a normal life (as normal as it could get). I was able to excel both academically and in my co-curriculars because of the strong encouragement of my near and dear ones. Yet, the journey wasn’t easy, and trust me epilepsy teaches you empathy and that everyone has their own demons to fight. After following with the routine and braving the storm, I now live a normal life. I enjoy taking all the rides in Adventure park, tried my hand at swimming, I am now even learning to Drive. I lived a corporate life, staying in Bangalore alone, away from my parents for the first time in life. I now look forward to carrying forward my research and helping others brave the storms in their life. If I could face it, you can too! Do let me know if I could be of any assistance to you 🙂 #### 5 Ways epilepsy is life changing **1. Your parents are bound to worry.** Miss a call at 2 AM and they are likely to loose their sleep. Keep them updated about your whereabouts. Share your parents phone numbers with your peers and friends! They are bound to get a lot of calls (Trust me, I have seen this happening). **2. Some food items and activities might become rare.** I had to take permissions before having an icecream! Fret not, you will always find alternatives. Once you are stable for a long duration, with the permission of your doctor you can even swim and drive! **3. Changes in Sleep Cycles** Epileptic medications are bound to alter your sleep cycles. You might want to sleep a whie longer than everyone around. This is quite normal! **4. More Efficient with Your Time** You will start respecting time : As a result of longer sleep cycles and less time at hand, you will tend to become more time efficient, and also a bit more motivated. **5. You learn the difference between sympathy and empathy** You recognize the fact that each individual has their own demons to fight! Empathy comes like second nature to you. #### 5 Tips to Make Living with Epilepsy Easier **1. Routine is Important** Take your medications on time. Time your body clock, manage and time your food and sleep well. **2. Do not be afraid, break the taboo** Keep everyone well informed about your health condition. They should be aware of how they can support you during and after a seizure. **3. Have some faith** Never loose faith, trust that with time and a bit of patience everything would get better. Also have faith in your doctor. **4. Yoga and breathing helps** Focus on your health, try some yoga and practice pranayams, this really helped me. If yoga is not your cup of tea, join an indian classical dance class- they have the same therapeutic effects 🙂 (Watch my Dance Guru Smt Kanaka Sudhakar, talk about these in detail, here 🙂 ) **5. Focus on developing a strong support system** Join communities, dance, find a hobby, read books and meditate(Alone it is tough, I recently joined this great community (In an attempt to better my sleep cycles and getting up early) here )to aid your healing process. #### Know an Epilepsy Fighter? Do you know an epilepsy fighter? Want to help and support them? [Encourage them to submit a story here](https://livingwellwithepilepsy.com/share-your-epilepsy-experience). I have always felt the need to start a community for people facing epilepsy especially the caregivers since they need some mental and emotional strength to brave the storm. I have just started an initiative in this direction. Help spread positivity and awareness 🙂 Its a unique fun filled event on Purple Day going live virtually on 26th of March – ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, Epilepsy Stories, Mar 21 EBR Posts **Tags:** helpful tips, tips --- ### [Living an Active Life with VNS](https://livingwellwithepilepsy.com/epilepsy-stories/living-an-active-life-with-vns.html) **Published:** March 10, 2021 **Author:** Guest Contributor **Excerpt:** John has been living with epilepsy for the past 12 years. He's had to give up triathlons. But he's looking for advice on living with VNS and doing endurance sports. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/02/2da14fd6-4e73-4305-90a8-921220a7044f-e1615432086211.jpeg "2da14fd6-4e73-4305-90a8-921220a7044f – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2021/02/2da14fd6-4e73-4305-90a8-921220a7044f-e1615432086211.jpeg)John’s Story Twenty years ago I underwent a surgery for a tumor and I have been living with epilepsy for the past 12 years. I have tried a bunch of different medications and finding the right treatment has been a process. It has been two steps forward and one step back. Lately, it feels like one step forward and one step back. Basically, I’m treading water. #### VNS and Intense Exercise I’ve had to give up triathlons. Slowly, I’m starting to get back into the sport but the VNS is not yet catching all of my episodes. In fact, the more I push to compete in races, the more likely it is that I will have a seizure. --- **[Related: Tri Harder: Michael Poole, triathlete living with epilepsy](https://livingwellwithepilepsy.com/2014/interviews/michael-poole-triathlete.html)** --- I would typically have an aura but now, I am not getting this aura with my training. I need to discuss with my doctor if he needs to up the intensity of the VNS to see if it will capture the times in which my heart rate hits a level that may indicate that I am having a seizure. It is a false-positive my heart-rate is elevated by choice. #### VNS Therapy Is anybody else in this kind of situation? Did an increase in intensity of VNS therapy help tame the problem? I don’t want to give up something, like triathlons, that I enjoy. I don’t have to push myself as hard so that I can keep my heart rate in check, but its hard not to want to compete. I am not the kind of person who will sit on the couch and accept a sedentary lifestyle. I think that this is when the VNS may be working because my heart rate is low. #### What to expect The only side effect I have experienced from the VNS is a change in my voice. It also takes a few days after my settings are adjusted for my body to be accustomed to the new levels. #### RNS Therapy Has anybody had the RNS put in? What do you feel about the RNS? What was the recovery like? I had surgery not related to the epilepsy. Ironically, my doctor suggested that one of the potential ways to get rid of the epilepsy is to go back in for surgery. However, that really isn’t an option in my mind (no pun intended). Here is my biggest question. Is there anybody here who lives an active lifestyle which raises the heart rate and has been experiencing more seizures. --- **[Related: Balancing Fitness Goals with Epilepsy](https://livingwellwithepilepsy.com/2016/fitnessandepilepsy/finding-balance-fitness-goals-epilepsy.html)** --- #### VNS vs RNS Has anybody have a VNS and then opted to get an RNS? Does your epileptologist allow both devices to run at the same time? If so, have you seen any positive changes with seizure control while taking anti-epileptic medications. The way that I see this: there are 3 forms of defense mechanisms at work in this situation to try to control those darn seizures. I want to be able to compete without having fear that I may have an episode while exercising. This is disheartening now that COVID-19 is starting to become understood better. Less social distancing may be on the horizon. If that is the case, that means that events that were cancelled for the past year may now start to reopen. I cant wait to sign up for the 5k, 10-miler, and half marathon. I want to get back on my bike and ride the country roads. #### Reaching Out for Help My main goal is to try to network with someone who is physically active and took AEDs but didnt have 100% control of their seizure. The next phase was to have the VNS along with AEDs but still didnt get seizure relief (i know that these paired together is a cure). I’m at the point in which someone fit the criteria that I explained while adding the RNS into the equation. I’m trying to gather information about treatment options so that I can speak with some knowledge to my epileptologist to see if he would consider the RNS procedure Any extra help from somebody in the same boat as I am would be greatly appreciated. #### Stronger Together We are all in this together. Its a special club that we belong (honestly-a club that i would sooner not want to partake) but there isn’t a whole lot that we can do other than support one another. We all have to stick together. I wish everybody the best of luck in your journey to a full, exciting life that you want and not to loose out on some of experiences that others may have. We can do it. With proper precautions we can do what our non epilepsy counterparts can have. We just may need to approach it from a different angle. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, Epilepsy Stories, Mar 21 EBR Posts --- ### [Finding Empowerment in the Daily Life with Epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/daily-life-with-epilepsy.html) **Published:** March 10, 2021 **Author:** Amanda Plomp **Excerpt:** Amanda shares a sneak peek into her daily life with epilepsy and how managing her epilepsy has made her more in touch with her needs. **Content:** #### ![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/03/pexels-bich-tran-760710-300x200.jpg "pexels-bich-tran-760710 – Living Well With Epilepsy")Amanda’s Story We all have different types of epilepsy, different versions of the condition and sometimes additional conditions compounding it that might make it a little more difficult to manage. No matter what, though, taking ownership of epilepsy management is important. We have a life that requires being more aware of ourselves physically and emotionally every day. This gives us the opportunity for a [consciousness](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/epilepsy-blog-relay-creating-your-personal-mantra.html) that some people never experience. Though we all have different needs and schedules, I wanted to share mine and how taking responsibility helped me feel empowered. #### Daily Life with Epilepsy **6:00 A.M.** – Take medication. **6:30 A.M.** – The time difference between when I take my medication and when I get up is crucial for me. I used to only have seizures in the first 15-30 minutes after waking up. While that is not the case anymore, it doesn’t change decades of habit. Like many of us, the regularity of timing our medications is also important, which kinda stinks on weekends when I don’t have to wake up early. **Morning** – I am hyper aware of what my body is doing. If I drop my coffee when leaving a coffee shop, I assess whether it may have been a tremor, small seizure, if I just stumbled, or if I was holding too many things at once. If I jab myself in the eye with the mascara wand, I evaluate if that was that a tremor or I’m just bad at putting on makeup this early in the morning. **Daytime** – I always have medication with me, keeping it in my purse. That way, if I decide to pick up groceries after work or meet for a visit with a friend, I have it with me. There is never a time that I don’t have my medication available to me. I might forget my wallet or phone, but never my meds. At my workplace, I keep a spare blouse and pair of slacks in case I trip and tear the pants or ruin my top from the blood on my fingers if I am lucky enough to have caught myself. Like a creepy haunting, I am never alone. Even if I have not had a seizure recently, I am always aware and prepared for those situations. **6:00 P.M.** – Take medication. **Evenings** – I love to [run](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/why-its-important-to-exercise-when-living-with-epilepsy.html), and in my running belt I keep an evening and morning supply of medication, all of my emergency contact information as well as my prescriptions and allergies. Even though it’s somewhat cumbersome, I always have that belt, just in case. All of my friends have my emergency contacts, even if they have never met. I have to be super aware about the state of my body, but this [self-assessment](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/sleep-and-epilepsy.html) has been a benefit to me whether it’s comes to running or meeting up with friends. **9:00(ish) P.M.** – My end of the day might be earlier than most, but it doesn’t feel inconvenient because I enjoy cozying up in my pajamas and reading in bed. And, of course, I have my medication with me. It might be easier to exist without epilepsy. I don’t actually know anymore. What I know is the accountability and reliability of being responsible for taking medication twice a day. I trust in my ability to be dependable. What I know is how to assess my body for injuries, triggers, or changes. I trust that when I am running to know when to walk because something isn’t right, even if it has nothing to do with epilepsy. What I know is how to tell when a bad attitude is the result of regular restlessness or reactive to an event. I trust in my ability to solve that emotional state on my own, by reaching out to friends or by needing to speak to a neurologist. How many positive things in our lives can we trust in because of epilepsy? I bet it’s more than expected. Epilepsy in everyday life gives us a personal awareness in ourselves. We have more to build upon because of it. It’s a foundation to who we are as long as we are willing to listen. ![author avatar](https://secure.gravatar.com/avatar/2605f5c0e62bfaaed5a7e596762284f8d485b903613939ef577383c5df9dd275?s=300&d=mm&r=g) Amanda Plomp [See Full Bio](https://livingwellwithepilepsy.com/author/amanda) [ ](https://livingwellwithepilepsy.com/author/amanda) **Categories:** Epilepsy Blog Relay, Epilepsy Stories, Mar 21 EBR Posts --- ### [8 ways to support families affected by severe epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/8-ways-to-support-families-affected-by-severe-epilepsy.html) **Published:** March 6, 2021 **Author:** Mary Anne Meskis **Excerpt:** Mary Anne shares 8 tips for supporting families caring for a child affected by severe epilepsy. She gives a little insight into her own experience. **Content:** #### ![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/02/E-hammock-300x300.jpg "E hammock – Living Well With Epilepsy")Mary Anne’s Story Receiving a diagnosis of a rare epilepsy is not what anyone wants for their child and family. It is a struggle to learn about this rare condition that your child will not outgrow and impacts every aspect of their daily life. As [parents](https://livingwellwithepilepsy.com/2018/parenting/epilepsy-blog-relay-dana-is-loving-life-as-an-epilepsy-mom.html) and caretakers, we have to make frequent decisions for our children’s health and well-being, and these are often complicated choices with no straightforward answers. It’s a struggle with the anxiety and grief that accompany the many unknowns. My rare disease [community](https://livingwellwithepilepsy.com/2020/epilepsy-blog-relay/finding-real-support-in-the-online-epilepsy-community.html) has been invaluable for support and advice. I have also been fortunate to have good friends and family members who have stepped up and tried to help my family throughout this journey. If you are trying to provide support to a [newly diagnosed](https://livingwellwithepilepsy.com/2015/aboutus-lwwe/emilys-perspective/new-to-epileptic-seizures.html) family, I wanted to share my experience on what others have done that made life easier for our family. #### 1. Choose supportive words carefully. Don’t minimize my child’s disease by saying he “looks good” or will probably “outgrow it.” I realize these sentiments come from a supportive place, but that can feel dismissive with all that my son is going through. We are frequently dealing with seizures, hospitalizations, frequent visits to doctors and specialists, blood draws, multiple therapies, [side effects](https://livingwellwithepilepsy.com/2013/livingwell/ask-an-epileptic-change-medications.html) from medications, and more. While he may not look sick, he is dealing with a lot. Acknowledging his and our family’s struggle is more impactful than glossing over it. #### 2. Be open-minded and patient. Cognitive delays impact my son’s decision making and social interactions. His behavioral issues and tantrums can frighten others or cast judgement against my son or my parenting. Kindness and empathy for the fact that both he and I are doing the best that we can in those moments is very much appreciated. #### 3. Reach out to caregivers. Being a caregiver for someone with a chronic and severe medical condition is mentally and physically exhausting, making my free time limited. While caregiver communities offer vital support and information, I still want and need relationships with friends and family. I appreciate it when people check in with me, but I ask for your understanding if I am not in the mood to talk or have to cancel plans at the last minute. That is not a reflection of you or our relationship. I am often [dealing with a lot](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/on-being-resilient-when-it-all-seems-to-be-too-much.html) of heavy things regarding my son’s care, and sometimes I need to take time to process. #### 4. Simply listening. I face an ongoing cycle of grief that can be triggered by a variety of things and unloading my concerns can be cathartic. I don’t expect people to understand everything I contend with, but I appreciate when you make the effort to hear me. Simple, heartfelt words of support and encouragement are helpful. #### 5. Tell me about your family’s successes. I want to share your family’s joys and triumphs with you and don’t want a wall between us because my son is sick. While it might sometimes be hard for me to watch your child do things that my child can’t, I am genuinely happy for your family. #### **6. Include our family in your plans.** Our lives are fraught with challenges, which gives us all the more reason to want to go to a party or see friends. Continue to invite us and please be understanding if we have to cancel last minute. I often have to make a difficult decision to avoid situations to keep my son from potential [seizure triggers](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/epilepsy-blog-relay-creative-solutions-to-seizure-triggers.html) which limits our social interactions. Asking what you can do to make it easier for us to be a part of your plans and being flexible is priceless. #### **7. Here’s some little ways to help.** When your child can end up in the hospital with no warning, it is very stressful to handle the other details of day-to-day life while you are away. Being surrounded by a support system makes a big difference, and often people don’t know how to help. Things like cooking, grocery shopping, or helping with childcare can ease the stress. Any relief you can offer will be greatly appreciated and helps me feel supported when I need it most. #### **8. Please include my son.** I really appreciate it when you invite my child to be involved and when you are flexible in accommodating his needs so that he is able to participate. He has so many limitations on what he can do, but he loves being around people and having fun. It means the world to my son and our family when he’s included and feels a part of people’s lives. ![author avatar](https://secure.gravatar.com/avatar/f9d850232ce60294146a1803b082dd2386947fa79df6409d427683c3fc72bb33?s=300&d=mm&r=g) Mary Anne Meskis Mary Anne Meskis is a founding member of the Dravet Syndrome Foundation (DSF) and accepted the role of Executive Director in 2012. She is a passionate advocate and in addition to her role at DSF, she serves on several epilepsy working groups and patient advisory panels. Mary Anne resides in North Carolina with her husband and her youngest son, Elliot, who has Dravet syndrome. [See Full Bio](https://livingwellwithepilepsy.com/author/mary-anne) [ ](https://livingwellwithepilepsy.com/author/mary-anne) **Categories:** Dravet Syndrome, Epilepsy Blog Relay, Epilepsy Stories, Mar 21 EBR Posts --- ### [Getting Excited About Epilepsy Research](https://livingwellwithepilepsy.com/epilepsy-stories/getting-excited-about-epilepsy-research.html) **Published:** March 5, 2021 **Author:** Torie Robinson **Excerpt:** Torie Robinson shares how an interest in epilepsy research is the motivation behind her site Epilepsy Sparks. **Content:** #### ![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/02/TorieRobinson-280x300.png "TorieRobinson – Living Well With Epilepsy")Torie’s Story Epilepsy research excites me. Thankfully, after a [temporal lobe resection](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/my-journey-with-rns-surgery.html), I can get excited without worrying so much that it causes a seizure. I’ve had epilepsy for most of my life, and now I have made it my career and my purpose to bridge the unnecessary, unproductive communication gaps between clinicians, scientists, patients, and caregivers. #### My love of research and science I’ve always loved the sciences. In fact, I’ve developed a particular interest in neurology and neuroscience. Over the last few years I’ve been able to slip gently into my passion of proactive communication regarding epilepsy. Stepping outside the role of patient and into the role of advocate can be really tough to do but there is an incredibly inspiring and remarkable world of research in epilepsy and its associated afflictions. Talking to cool neurologists, scientists, and researchers who want to share their work with us truly provides a sense of logical hope. There is a real, meaningful purpose to their work, and I wanted to create a platform to hopefully spark some hope in others as well. It was from this hope and knowledge that [Epilepsy Sparks](https://www.epilepsysparks.com/) was born. #### Epilepsy Sparks The site, [epilepsysparks.com](https://www.epilepsysparks.com/), was designed to bridge the bridge the gap between patients, neurologists, and scientists. Here are a few highlights on [Epilepsy Sparks:](https://www.epilepsysparks.com/) Dr. Simon Keller, [Liverpool BRAIN Lab](https://www.epilepsysparks.com/labs), Liverpool University, UK Dr. Dana Simmons, [Brain Art](https://www.epilepsysparks.com/brain-art), Neuroscientist, Chicago, USA #### Epilepsy Glossary It’s hard to keep track of all the terms we’re “supposed” to know. Understanding I wasn’t alone in remembering all of the definitions and acronyms, I created the [Epilepsy Sparks glossary](https://www.epilepsysparks.com/glossary). #### Up-To-Date Epilepsy Many of us want to know what clinicians and scientists were up to, so I created the [Epilepsy Sparks Insights podcast](https://www.torierobinson.com/epilepsy-sparks-insights), which features interviews with inspiring leaders in the fields of epilepsy, epilepsy research, [neuroscience](https://livingwellwithepilepsy.com/2019/neurobiology/caffeine-and-epilepsy.html), and epilepsy care. I confess I’m frequently thinking, “OMG, I feel so stupid!” when I meet so many beautifully inspiring and intellectual people, but I work on reassuring that inner voice we can all learn more. These people are giving us hope for the future. They see the value in communicating with those affected by epilepsy outside of their intellectual, clinical sphere. We should invite them into ours. #### The Inside Scoop I couldn’t be the only person valuing the empirical method, right? We need to have doctors and scientists help put answers to our questions in laymen’s terms. Experts are featured on the [Epilepsy Sparks Blog](https://www.epilepsysparks.com/blog). Through this process, I discovered there is an incredible number of professionals contributing to the [treatments](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/reasons-for-working-with-your-epilepsy-specialist.html) and care for people with epilepsy, yet we aren’t always aware of these impactful contributors. To help bridge this gap, their information is also included in the glossary. #### Getting the Word Out I’ve always been open about my epilepsy, so I started doing [speaking engagements](https://www.torierobinson.com/). I enjoy imparting personal and professional knowledge and experience of the worlds of neurodiversity, mental health, and diversity and inclusion. Many people are interested in learning more, and I enjoy engaging with an audience as a part of the incredible value of it long-term to all society. #### Thinking long term Ultimately my goal is to create positivity around epilepsy. I was fed up with the negativity forced on us by epilepsy, so I wanted [Epilepsy Sparks](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/live-with-torie-robinson.html) to be constructive and positive – like “The Happy News of Epilepsy!” It’s been refreshing to collaborate with organizations sharing a similar ideology, like [Living Well With Epilepsy.](https://livingwellwithepilepsy.com/) By working together, we achieve even more at the community and international levels. ![author avatar](https://secure.gravatar.com/avatar/ecb3467b6fcc0a4801f1357f2fb571450165975fbd9af56d2581980d20b0b435?s=300&d=mm&r=g) Torie Robinson Keynote Speaker – Epilepsy, Mental Health & Neurodiversity; Writer, SAC, TV, Radio; CEO of Epilepsy Sparks – Educating and bridging the gap between epilepsy patients, neurologists and scientists. Working with: Google, CBSi, KPMG, BUPA, NHS, DWP, HuffPost, BBC, Sky News, and more [See Full Bio](https://livingwellwithepilepsy.com/author/torie) [ ](https://livingwellwithepilepsy.com/author/torie) **Categories:** Epilepsy Blog Relay, Epilepsy Stories, Mar 21 EBR Posts --- ### [Employment, Epilepsy and Equality: To tell or not to tell?](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-and-equality-tell-or-not-to-tell.html) **Published:** March 4, 2021 **Author:** Guest Contributor **Excerpt:** When it comes to epilepsy, equality, education and employment, it is my firm belief that we are all allowed to dream regardless of abilities or disabilities. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/02/6lorraine-lally-barrister-epilepsy.JPG "6lorraine-lally-barrister-epilepsy – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2021/02/6lorraine-lally-barrister-epilepsy.JPG) **Contributor: Lorraine Lally** We all have different labels and we all have different dreams, aims and ambitions. When it comes to epilepsy, equality, education and employment, it is my firm belief that we are all allowed to dream regardless of abilities or disabilities. #### Lawyer with Epilepsy I am a practising barrister (lawyer) and mediator living in the West of Ireland. I have been an advocate for epilepsy for as long as I can remember because I am an advocate for human rights, dignity and respect. I was diagnosed with epilepsy around 8 years old and they linked the epilepsy to my premature birth as a baby. #### Americans with Disabilities Act #### References: [EEOC and Epilepsy](https://www.eeoc.gov/laws/types/epilepsy.cfm) [ADA and Epilepsy](https://www.ada.gov/cguide.htm) [Disability Compendium](https://disabilitycompendium.org/sites/default/files/user-uploads/2016_AnnualReport.pdf) [ADA Amendments Act of 2008](https://en.wikipedia.org/wiki/ADA_Amendments_Act_of_2008) My epilepsy has been a journey for me with adverse drug reactions leading to [Steven Johnson Syndrome.](https://www.mayoclinic.org/diseases-conditions/stevens-johnson-syndrome/symptoms-causes/syc-20355936) The reason for writing the blog to take part in a conversation as a woman with epilepsy. I would like to explain how you create equality and that is through education and sharing information with others. Equality provides for education and then to employment. #### Careers When Living with Epilepsy So what can you do as a person with epilepsy. - Can you be a surgeon or a doctor? **Yes** - Can you be a Nurse? A lawyer? A doctor? A Pathologist A psychologist? **Yes** - An Actor? like Danny Glover **Yes** - A Poet? like Emily Dickinson **Yes** - A singer? like Susan Boyle Scottish singer **Yes** - A judge? like John Roberts, Chief Justice to the US Supreme Court **Yes** --- **Related:** [**Disability in the Workplace**](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/disability-in-the-workplace.html) --- #### Disclosure of Epilepsy in Ireland In Ireland, there is a great discussion of the Direct Discrimination and the Indirect Discrimination. The issue of Disclosure is most significant element to a person with a disability. The form filling exercises completed by all persons on application for a job and the inherent difficulties with disclosure of the fact of a medical condition. If a person has to disclose their existing medical condition of Epilepsy then should a woman when being interviewed have to disclose the fact that she is pregnant? The Irish legislation defines discrimination as treating one person in a less favourable way than another person based on any of the following 9 grounds: - Gender: this means man, woman or transsexual - Family status: this refers to the parent of a person under 18 years or the resident primary carer or parent of a person with a disability - Disability: includes people with physical, intellectual, learning, cognitive or emotional disabilities and a range of medical conditions. #### Disclosure of Epilepsy in the USA As a person in the United States you should know your rights and know what the protections are for you as a person with epilepsy in a wide variety of services. Even though there are laws to protect people with epilepsy, there is still discrimination in real life. #### No limits If you are a person with epilepsy do not let the condition limit you or stop you in your dreams. I would ask you to take part in education and to also engage in employment because your life is your own. The basic human need is for a person to belong and take part. I am a human being with epilepsy and I am also an Irish woman writing about our experience so that you can know that the discrimination is something we are still fighting. I would like to say that I have epilepsy and it will not limit my ability to dream. *“Saying nothing… sometimes says the most.”* *– Emily Dickinson, a poet with epilepsy* ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, Epilepsy Stories, Mar 21 EBR Posts --- ### [Epilepsy and Pregnancy: Celebrating Significant New Evidence in 2020](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-and-pregnancy-celebrating-significant-new-evidence-in-2020.html) **Published:** March 3, 2021 **Author:** Michelle **Excerpt:** Learn more about epilepsy and pregnacy as well as the latest research on the topic. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/02/baby-2.jpg "baby-2 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2021/02/baby-2.jpg)Thirteen years ago, my husband and I, then ages 51 and 38, respectively, decided to grow our family beyond the two of us and a cat. Our tiny, urban apartment, our advanced ages, and my epilepsy were issues we were determined to manage exclusively with experts in each field. #### Epilepsy and Pregnancy The first call after our Big Decision was to my epileptologist’s office. At this juncture, I was uncertain about almost everything. How would I choose which maternal fetal medicine (MFM) specialist had demonstrated expertise in caring for women of advanced maternal age with epilepsy and their developing fetuses? Anxiety mounted into all the hypotheticals. Yet by the day of the appointment, it turned into reality with a two-parallel-lined positive pregnancy test. The questions kept coming, and so did the fears. As many women both before and after me, I entered the exam room full of emotion and with a deep need for answers. #### *Q: What about sleep deprivation and night feedings?* He told me we needed assistance in the night and support so that I could sleep during the day. Of that he was certain. And that was where the certainty seemed to end. #### *Q: What about antiepileptics?* Should I expose my child in utero — and then possibly [postpartum](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/postpartum-care-and-epilepsy.html) — to the drugs that sometimes affected my word retrieval and cognition? We discussed the available published literature as well as anecdotal observations about what other women in his practice were choosing. He said I would need to conduct my own risk-benefit analysis, but without reservation I needed supplemental folate. At least those folic acid data were conclusive. #### *Q: What about the risk of increased seizure frequency during pregnancy, or seizing during labor and delivery?* Maybe, yes, on both accounts, he surmised. Increasing seizure frequency was observed in several pregnant patients, but he could not quantify the percentage. This major concern for fetal development and birth injury echoed what I had read and heard many times. Mounting ambiguity was painful. #### *Q: What about nursing?* He advised I speak with the clinical pharmacist at the [Comprehensive Epilepsy Center](https://www.naec-epilepsy.org/about-epilepsy-centers/what-is-an-epilepsy-center/), who had a different opinion than the lactation nurse, who had a different opinion than the MFM specialist. “Future studies are needed to clarify the risk,” stated the published evidence in 2008. #### Making a decision When I left his office, I felt so confused and second guessed every decision. All I could see were multiple risks for significant developmental delays and increased seizure frequency. I noticed the infant formula at our grocery store had dust on it and concluded I was the only one in our neighborhood considering such a maligned option. Depression started to form a slight layer on my anxious soul. How could there be so many gaps in evidence and, in turn, how do pregnant women with epilepsy make informed decisions to optimize infant health outcomes? --- [**RELATED: Epilepsy and Pregnancy**](https://livingwellwithepilepsy.com/2019/epilepsy-blog-relay/mar-19-ebr-posts/seizures-pregnancy-and-epilepsy-in-real-life.html) --- Weeks later I ran into our downstairs neighbor and shared the news of my pregnancy. She gleefully asked about my birth plan, while sharing her beautiful vision for hers. When I relayed that my line items included supplemental oxygen and an epidural, she seemed confused by my lack of midwifery and labor/delivery musical selection preparation. I felt I lacked the glow of a first-time mother-to-be and and attendant guilt for failing my developing child. #### Managing Uncertainty In many conversations since those days with both neurologists and expectant mothers living with epilepsy, I am aware that even with the publication of new guidelines and evidence, pregnancy remains a challenging and uncertain time. And while 2020 was not cause for much celebration, we can praise the [landmark study](https://www.nejm.org/doi/full/10.1056/NEJMoa2008663) published in The New England Journal of Medicine, which narrowed a major evidence gap for those desperate for high quality research in personal decision making. The multi-center, prospective observational study found that during pregnancy and the peripartum period, women with epilepsy who were monitored carefully by their physicians did not have an increased seizure rate compared to [women with epilepsy](https://livingwellwithepilepsy.com/2011/epilepsy-news/womens-health-and-epilepsy.html) who were not pregnant during a similar time period. Thankfully, after all these years there is reassurance for those concerned about significant changes in seizure frequency during pregnancy. For so long women living with epilepsy were counseled about an increased risk of worsening and diminished control and, understandably, made major life choices accordingly. #### The Joy of Motherhood This month, my vibrant, inquisitive, and good-humored daughter turns twelve years old. The overwhelming joy of being her parent is in inverse proportion to the terror of gestation and those early months – and early years – when we were on high alert for any developmental consequences of choices made with a dearth of evidence. Of this I am certain. I am also certain that if you are struggling now, please remember you are not alone. Ask your obstetrician or local [Epilepsy Foundation](https://www.epilepsy.com/) for a support group or therapy referral. ![author avatar](https://secure.gravatar.com/avatar/fde70fb44fd958835d94043417c04af4a340a137f4eb643f7eb8da7ce9751ee7?s=300&d=mm&r=g) Michelle [See Full Bio](https://livingwellwithepilepsy.com/author/amm) [ ](https://livingwellwithepilepsy.com/author/amm) **Categories:** Epilepsy Blog Relay, Epilepsy Research, Epilepsy Stories, Mar 21 EBR Posts, Pregnancy --- ### [Real Talk on Epilepsy: A Love Letter from My Brain](https://livingwellwithepilepsy.com/epilepsy-stories/real-talk-on-epilepsy-a-love-letter-from-my-brain.html) **Published:** March 2, 2021 **Author:** Alisa Jones **Excerpt:** Alisa Jones shares a little real talk in a humorous note from her brain on living and coping with epilepsy. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/02/Alisa.jpg "Alisa – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2021/02/Alisa.jpg)I got this letter from my brain yesterday. The penmanship was atrocious. She must have been drinking. I think she may be under the impression that she is a young Elizabeth Taylor. You can almost picture her staggeringly violet eyes staring you down as she speaks: **Dear Alisa,** My dearest love. Yes, I know it looks like a real mess in here right now and I know my writing you this love letter may seem a bit unorthodox in light of the situation but, darling, I couldn’t resist. The temptation in me, across my every axon and dendrite, was too powerful. I know you feel betrayed by me, by my electrical taunts, by what seems like faulty wiring between my lobes, but my love for you is boundless. It’s complicated, but I have evolved and adapted for more than one hundred thousand years across one hundred billion cells to keep you safe, to keep you interesting, and to keep evolving. In truth, I am a secret radical—like Jane Austen or Emily Dickinson. With more than [50 million people](https://livingwellwithepilepsy.com/2020/epilepsy-blog-relay/global-action-plan-on-epilepsy.html) worldwide living with epilepsy, one in ten people will develop seizures in his or her lifetime. These people not only need practical, prescriptive advice for surviving a life with seizures, they need to know how to make meaning of seizures, of epilepsy, and of life with it. I am more of a process than I will ever be a specific organ with a function, and because of that, I am always becoming something new, something else. Writing about seizures is like writing about the soul. It’s forever elusive. Every time you think you’ve captured it, it shifts form or disappears altogether. While we may indeed have to respect some of the cards we’ve been dealt, we can still [re-craft the story](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/a-positive-approach-to-an-epilepsy-diagnosis.html)—to laugh a little. Or a lot. You are never beholden to a sh\*t narrative, my dearest love. Try to take that very same richness and intensity of feeling that comes with this electric condition and apply it to every moment in between and ahead. If you feel you have been on the outside of your life for so long, like an uninvited guest hovering at the periphery, and that you can never claim it back, I am writing to tell you that you are wrong. I, your brain, was wired to write multiple futures. When I send you messages that say, “Stop, go back!”; or, “Don’t do this! This is dangerous and it will involve pain”; or, “You will get hurt,” I need you to listen and hear me and know that I have evolved over all this time to protect you and to perpetuate your species. Every problem I present you with is an adaptive piece to propel the story. Your story. The one you are writing at this very second. Let this new narrative heal you. Let it heal others. Make them curious and defy their expectations however you choose to. Who decides who gets to be the good epileptic anyway? Now, as your brain, I feel I have a duty to inform you that I have this fantasy that all the nerds and weirdos of the world will read these words here and, bit by bit, even in the reddest, most singular, and closed-minded of rural backwater places and towns, they will grow into radical neurodiverse sleeper cells. Think of them as subversive little tribes of epileptics, [autistics](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/mar-18-ebr-posts/epilepsy-blog-relay-more-from-audra-on-life-with-autism.html), [anxious depressives](https://livingwellwithepilepsy.com/2015/epilepsy-blog-relay/epilepsy-blog-relay-epilepsy-depression-and-a-little-creativity.html), and other neurotypes all disrupting the [stigma](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/shedding-the-stigma-of-epilepsy.html). I say this because I want you (and all the disabled) to experience that odd, rare spark of joy; to be curious about what it means to be electric; and to understand how you can take something that should be really, truly awful and rewrite it to reflect joy. Words can spark such fires, and we are only just learning how to torch the ground rather than ourselves. Lovingly, Your brain *\*Edited and excerpted from [Gotham Girl Girl Interrupted – Misadventures in Epilepsy](https://bookshop.org/books/gotham-girl-interrupted-my-misadventures-in-motherhood-love-and-epilepsy/9781623545284) – available everywhere.* ![author avatar](https://secure.gravatar.com/avatar/4865c52084b478c4ff6b1b8d0f64e4623ef8a5b98f992686da397650adca1e45?s=300&d=mm&r=g) Alisa Jones Alisa Kennedy Jones is an American memoirist, blogger, novelist, and awkward public speaker. The co-creator of one positively riveting crime series (GIFTED), her award-winning bon mots have been featured widely in national media outlets, magazines, and on NPR. Her debut collection of comedic essays GOTHAM GIRL INTERRUPTED (Imagine!/Penguin Random House) is climbing the charts since it's release on Nov 6, 2018. Jones splits her time between New York City and the Berkshires. [See Full Bio](https://livingwellwithepilepsy.com/author/alisa) [ ](https://livingwellwithepilepsy.com/author/alisa) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://iamgothamgirl) **Categories:** Epilepsy Stories, Mar 21 EBR Posts --- ### [Living With Lennox-Gastaut Syndrome (LGS): Appreciating Every Moment Together](https://livingwellwithepilepsy.com/epilepsy-stories/lgs-and-appreciating-every-moment.html) **Published:** March 1, 2021 **Author:** Rachel Ablondi **Excerpt:** Rachel shares the story of her family's efforts to find quality time despite challenges of LGS Epilepsy. **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2021/02/image002-225x300.jpg "image002 – Living Well With Epilepsy")#### Rachel’s Story Our family drove forty miles north today to Hanover, Pennsylvania. A little over a year ago, my husband Dave found an old timey pinball spot he wanted to take us to. The arcade reminded my husband of the fun he had as a kid playing pinball and video game machines of an older generation, and Dave wanted our kids to experience the same fun. It’s not uncommon for our family of six to take a short drive for small adventures. It’s kind of our thing. My husband and I love spending time with our four kids, and we’re fortunate that at the ages of 21, 16, 14, and 11 that our kids still like to spend time with us. Our outings are meaningful to each of us in our own ways. My husband likes to drive. I like the change of scenery. Our girls are up for anything new. Our son Andrew loves the car ride, and even more he loves eating fast food. Andrew is 21. When he was a year old, he was diagnosed with [infantile spasms](https://livingwellwithepilepsy.com/2018/aboutepilepsy/family-pushing-boundaries-of-lgs.html) (a rare form of epilepsy), [cerebral palsy](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/life-with-cerebral-palsy-and-epilepsy.html), and [cortical visual impairment](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/child-with-multiple-chronic-conditions.html). Andrew’s infantile spasms diagnosis changed over the years to what he is diagnosed with now, [Lennox Gastaut Syndrome](https://livingwellwithepilepsy.com/2018/parenting/things-to-know-about-lennox-gastaut-syndrome.html) (LGS). With LGS, Andrew seizes every single day. Andrew cannot walk or talk and relies on my husband and I for most everything. Despite all of this, Andrew’s special needs have not gotten in the way of our family’s activity. We take pride in this. #### Stopping for lunch On our way to the arcade, we stopped first at a fast food restaurant to get something to eat. I went into the restaurant to order and to pick up the food. I returned to the car to find Andrew just had a seizure. He was pale and looked very sleepy. Since these are common for Andrew, it’s unfortunately a part of our regular days. His seizures last about a minute or so, and Andrew is then able to continue on with what he was doing. I decided to feed Andrew anyway, even though he had not recovered yet. He was so excited for the food the last half hour before our stop. When Andrew hears Dave and I talking about lunch plans, he immediately starts vocalizing his approval. He was hungry, and I love that he can tell us that. I was hoping the food Andrew was so eager about would bring him back to himself. I hated that his excitement was just stolen from him. From the very first moment I put Andrew’s food into his mouth, I could tell the seizure had impaired his ability to eat, but I continued to feed him, still hoping it would help. Andrew began to struggle. I had gone too far, and my mind started racing. *Why did I do that? I should’ve wait until he’s rested a bit.* The carefree, fun vibe in our van ended. Dave began panicking, too, and the stress in his voice was visceral. “What should I do? Pull over!? Sit him more upright! Why did you feed him after a seizure?!” He was trying to help, but also knew he was helpless at the steering wheel. I saw and felt the dread in my girls’ eyes. This wasn’t the first time one of our trips had been turned upside down. Frightened and stressed, panic mode stepped in. Andrew was struggling to breathe with salvia, mucous, and tears flowing down his face. He began coughing loudly, with strength and force. Andrew was choking. While this wasn’t the first time we had seen Andrew struggle during a meal, it had never been life threatening. Difficulty with eating started to become a normal occurrence and, as his strength in eating deteriorated, it brought up serious concerns: *Was Andrew getting sick?* Does Andrew now have reflux? Is his severe scoliosis now affecting his ability to eat? *What’s happening with Andrew? Is this the day we lose Andrew?* These questions are always hovering. I hate to admit it, but these questions are a heavy weight I always carry, despite any other impression I try to put forth. Eventually, Andrew was able to clear the food and the saliva. Our road trip continued on. I insisted Dave take the girls into the arcade so that trip could be successful on at least some level and not end in such a terrible way. Andrew and I sat in the van. He was exhausted and now asleep. I sat next to Andrew in the backseat with tears in my eyes, and the realization hit me like a ton of bricks. For most, we don’t know what the next day will bring. For my son, every single hour can bring a medical episode that could end his life. Just like that. This is why we road trip, why we carry on and why we treasure each moment together as a family. ![author avatar](https://secure.gravatar.com/avatar/da6cebf0dbd4b87dca339a8df6f6effa078cf084deac23b9fe1f8571ff94606f?s=300&d=mm&r=g) Rachel Ablondi [See Full Bio](https://livingwellwithepilepsy.com/author/rachel-ablondi) [ ](https://livingwellwithepilepsy.com/author/rachel-ablondi) **Categories:** Epilepsy Blog Relay, Epilepsy Stories, Mar 21 EBR Posts **Tags:** Lennox-Gastaut Syndrome, LGS --- ### [COVID-19 Vaccine and Epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/covid-19-vaccine-and-epilepsy.html) **Published:** December 3, 2020 **Author:** Jessica K. Smith **Excerpt:** Living Well With Epilepsy readers are concerned about the COVID-19 vaccine and epilepsy so we've put together answers to some FAQs. **Content:** #### A COVID-19 Vaccine The United Kingdom has become the first country to approve and authorize delivery of a COVID-19 [mRNA](https://www.cdc.gov/coronavirus/2019-ncov/vaccines/different-vaccines/mrna.html) vaccine, developed by [Pfizer and partner BioNTech](https://www.pfizer.com/news/press-release/press-release-detail/pfizer-and-biontech-achieve-first-authorization-world). The companies have signed an agreement to supply 40 million doses to the UK. This is an exciting scientific achievement and will help the global community in fighting the global pandemic. Living Well With Epilepsy readers are concerned about how the COVID-19 vaccine will affect people with epilepsy. We’ve put together a few answers to some frequently asked questions here to help ease your mind a bit. #### People with epilepsy and access to the COVID-19 vaccine According to the UK’s [Joint Committee on Vaccination and Immunisation (JCVI)](https://www.gov.uk/government/publications/priority-groups-for-coronavirus-covid-19-vaccination-advice-from-the-jcvi-2-december-2020) advice on who should have priority to get the COVID-19 vaccine, people aged 16-64 with epilepsy should be included in one of the priority groups in phase one of the vaccine distribution. **The priority groups are as follows:** Group 1Residents in a care home for older adults and their carersGroup 2All those 80 years of age and over Frontline health and social care workers Group 3All those aged 75 and overGroup 4All those aged 70 and over Clinically extremely vulnerable individuals (not including pregnant women and those under 16 years of age) Group 5All those aged 65 and over**Group 6**People aged 16 to 64 with underlying health conditions which put them at higher risk. **People with epilepsy are included in this group.**Group 7All those aged 60 and overGroup 8All those aged 55 and overGroup 9All those aged 50 and over#### COVID-19 vaccine and epilepsy medications According to [Epilepsy Action](https://www.epilepsy.org.uk/), the vaccine has been approved as safe by the [Medicines and Healthcare products Regulatory Agency (MHRA)](https://www.gov.uk/government/collections/mhra-guidance-on-coronavirus-covid-19). The NGO is not aware of any safety concerns for people with epilepsy. Epilepsy Action asked MHRA about the risk of a COVID-19 vaccine interacting with any medicines, including epilepsy medicines, and the NGO was told the risk is very low. #### People with epilepsy and an increased risk from coronavirus A recent study published in the [British Medical Journal](https://www.bmj.com/CONTENT/371/BMJ.M3731) suggests that people with epilepsy could have a slightly increased risk of being admitted to hospital or dying from coronavirus. It’s important to note that the study does not show whether epilepsy itself causes this increased risk, or whether the risk is linked to other factors that could affect people with epilepsy. As such, it is important to keep yourself safe by following guidance on social distancing, washing your hands and wearing a [face mask](https://bit.ly/36BT4Td) if you are able to. #### If I catch coronavirus could it trigger a seizure? Some people with epilepsy are more likely to have a seizure when they are feeling sick. This is particularly true when if people with epilepsy have an illness with a high temperature or a fever. Since fever is a symptom of coronavirus, it stands to reason this spike in temperature could trigger seizures for some people with epilepsy. For most people with epilepsy, a seizure is not a medical emergency and does not need hospital treatment. However, if you are at risk of [status epilepticus](https://www.epilepsy.org.uk/info/firstaid/emergency-treatment-seizures-last-long-time), make sure you have an up-to-date emergency care plan from your epilepsy specialist. Learn more about [rescue medications](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/live-with-craig-chambliss-discussing-the-importance-of-rescue-medications.html). #### [Have you had your flu shot this year?](https://vaccinefinder.org/find-vaccine) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Stories --- ### [Make the most of your next doctor's visit with the STEPS discussion tool](https://livingwellwithepilepsy.com/partner/sklifescience/make-the-most-of-doctors-visit-with-steps-discussion-tool.html) **Published:** November 25, 2020 **Author:** Jessica K. Smith **Excerpt:** You can now use the "Seize the Truth About Epilepsy Perceptions" (STEP) Survey" Discussion Tool, developed by SK Life Science, Inc., to prepare for your next doctor's appointment. **Content:** #### Seize the Truth about Epilepsy Perceptions The “[**S**eize the **T**ruth About **E**pilepsy **P**erceptions” (STEP) Survey](https://livingwellwithepilepsy.com/step-discussion-tool), was developed by [SK Life Science, Inc](https://www.sklifescienceinc.com/). to understand the current state of epilepsy in the United States and to foster better communication between patients and their care teams. According to WebMD, [results](https://www.sklifescienceinc.com/wp-content/themes/sklifescience2020/old/pdf/New_National_Epilepsy_Survey_Reveals_Significant_Disconnect_on_Important_Issues.pdf) from the [***S**eize the **T**ruth About **E**pilepsy **P**erceptions (STEP) Survey* ](https://livingwellwithepilepsy.com/step-discussion-tool)revealed ***eye-opening insights*** showing that patients, doctors and caregivers aren’t having the right conversations in the doctor’s office, which may lead to miscommunication and incorrect perceptions. #### STEPS Discussion Guide Now you can take the survey yourself and use it as a discussion guide before your next neurologist, or epileptologist appointment. We’ve provided links to the survey in [english](https://livingwellwithepilepsy.com/step-discussion-tool) and [spanish](https://livingwellwithepilepsy.com/step-discussion-tool). This is a wonderful tool to [prepare for your next doctor’s visit](https://livingwellwithepilepsy.com/2020/epilepsy-blog-relay/important-topics-to-discuss-at-your-next-medical-appointment.html). [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/Screen-Shot-2020-11-25-at-4.03.58-PM-1024x614.png "Screen Shot 2020-11-25 at 4.03.58 PM – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/step-discussion-tool) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** SKLifeScience --- ### [Epilepsy Blog Relay: Patient-Provider Disconnects In Epilepsy: National Survey Evaluates Perceptions](https://livingwellwithepilepsy.com/aboutepilepsy/patient-provider-disconnect-in-epilepsy-national-survey-evaluates-perceptions.html) **Published:** November 11, 2019 **Author:** Jessica K. Smith **Excerpt:** The “Seize the Truth About Epilepsy Perceptions” (STEP) Survey was conducted online on behalf of SK Life Science, Inc. The results revealed important disconnects that exist between patients, caregivers and healthcare providers (HCPs). **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/10/Screen-Shot-2019-10-23-at-9.23.20-PM.png "Screen Shot 2019-10-23 at 9.23.20 PM – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2019/10/Step-Survey-Infographic_10.8.19_FINAL.pdf) The “**S**eize the **T**ruth About **E**pilepsy **P**erceptions” (STEP) Survey, conducted online by Kantar Health on behalf of [SK Life Science, Inc.](https://www.sklifescienceinc.com/), was focused on adult patients with epilepsy to understand the current state of epilepsy in the U.S., with the ultimate goal of fostering better communication between patients and their care teams.[\[1\]](#_ftn1) The survey results revealed important disconnects that must be addressed in order for open, honest discussions to take place between patients, caregivers and healthcare providers (HCPs). The survey showed that epilepsy affects many aspects of daily life such as living independently, driving, holding a steady job, and maintaining solid/close relationships.[![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/10/Screen-Shot-2019-10-21-at-3.58.39-PM-300x197.png "Screen Shot 2019-10-21 at 3.58.39 PM – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2019/10/Step-Survey-Infographic_10.8.19_FINAL.pdf) Although there are several areas that comprise the epilepsy journey, epilepsy also has an emotional effect on patients and caregivers. Approximately 80% of patient and caregiver respondents said they feel some form of isolation due to epilepsy. After all, epilepsy has a much greater impact on a person than the physical symptoms alone. In fact, half of patients and caregivers surveyed feel that epilepsy is “a burden that will never go away.” More than 3 out of 4 patients and caregivers struggle to feel “normal,” with a constant fear of not knowing when the next seizure will come. In highlighting significant disconnects that occur in conversations among these groups, the STEP Survey has helped draw attention to key areas we can address to ensure patients receive the best possible care. Take a look at the infographic below to learn more about the insights. For more information about the STEP Survey, please visit [www.WebMD.com/EpilepsySurvey](http://www.WebMD.com/EpilepsySurvey). [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/10/Screen-Shot-2019-10-23-at-9.36.53-PM-e1571881158229-236x300.png "Screen Shot 2019-10-23 at 9.36.53 PM – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2019/10/Step-Survey-Infographic_10.8.19_FINAL.pdf) [\[1\]](#_ftnref1) SK Life Science, Inc. and Kantar Health. “Seize the Truth about Epilepsy Perceptions (STEP) Survey.” February 7, 2019 to March 27, 2019. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** About Epilepsy, Nov 19 EBR Posts, SKLifeScience --- ### [World Health Assembly calls for global action plan on epilepsy](https://livingwellwithepilepsy.com/epilepsy-blog-relay/global-action-plan-on-epilepsy.html) **Published:** November 23, 2020 **Author:** Jessica K. Smith **Excerpt:** At #WHA73, Member States endorsed a resolution calling for global action plan on epilepsy and other neurological disorders. Learn more. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/who-wha73-18may2020-254-1024x683.png "who-wha73-18may2020-254 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/who-wha73-18may2020-254.png) While we were busy developing sourdough starters, establishing victory gardens, cancelling vacation plans and generally going stir crazy, the World Health Assembly gathered and took a moment to address the global impact epilepsy is having on the health of people around the world. #### WHA73 At the [73th Session of the World Health Assembly](https://www.who.int/news/item/12-11-2020-wha73-endorses-resolutions-on-meningitis-control-and-epilepsy-roadmap-on-neglected-tropical-diseases), Member States endorsed a resolution calling for scaled-up global action plan on epilepsy and other neurological disorders. This resolution asks that a plan be developed for consideration at the 75th Session of the [World Health Assembly](https://www.who.int/about/governance/world-health-assembly/seventy-third-world-health-assembly/the-who-and-the-wha-an-explainer). The Committee also recommended the adoption of [a resolution calling for scaled-up and integrated action on epilepsy and other neurological disorders](https://apps.who.int/gb/ebwha/pdf_files/WHA73/A73_ACONF2-en.pdf) such as stroke, migraine and dementia. Neurological disorders are the leading cause of disability and the second leading cause of death worldwide. #### Developing a global action plan The WHA Member States suggested that much of the neurological disease burden is preventable, provided that broad public health responses in maternal and newborn health care, communicable disease control, injury prevention and cardiovascular health, are implemented. Challenges and gaps in providing care and services for people with neurological disorders exist worldwide, and more so in [low- and middle-income countries](https://livingwellwithepilepsy.com/epilepsy). #### Important takeaways - Epilepsy and other neurological disorders are the leading cause of disablity-adjusted life years - Epilepsy and other neurological disorders are the **second leading cause of death worldwide** - Despite the low cost of effective interventions for epilepsy (estimated at less than US$ 5/per person/year), the current treatment gap is over 75% in most low-income countries and 50% in the majority of middle-income countries - The risk of premature death in people with epilepsy is three times higher than in the general population - Over the past 30 years, the absolute number of deaths due to neurological disorders has increased by 39% [REVIEW THE FULL RESOLUTION](https://apps.who.int/gb/ebwha/pdf_files/WHA73/A73_ACONF2-en.pdf) The action plan on epilepsy and other neurological disorders will address these gaps through integration of prevention, diagnosis, treatment and rehabilitation for neurological disorders within primary health care, which is critical to achieving universal health coverage. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Blog Relay, Nov 20 EBR Posts --- ### [Three opportunities for researchers interested in developing neurotherapeutics](https://livingwellwithepilepsy.com/epilepsy-blog-relay/three-opportunities-for-researchers-interested-in-developing-neurotherapeutics.html) **Published:** November 21, 2020 **Author:** Jessica K. Smith **Excerpt:** For the researcher interested in developing Neurotherapeutics who is looking for ways to network with experts in academia, industry, advocacy, and government here are three great opportunities. **Content:** Are you interested in developing Neurotherapeutics? Do you want an opportunity to network with leading experts in academia, industry, advocacy, and government? Do you just want to know more about the current state of therapeutics in several neurological disease areas? Here are several opportunities to take your career to the next level: #### 1. Training in Neurotherapeutics Discovery and Development for Academic Scientists [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/NIH-COurse-Logo.jpg "NIH COurse Logo – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/NIH-COurse-Logo.jpg) #### [APPLICATION DEADLINE: December 14, 2020](http://www.neurotherapeuticscourse.org/submit-an-application.html) **Course Dates:** February 8-12, 2021 **Course Format:** Virtual **Course Fees:** FREE to apply, FREE to participate for accepted applicants (fees covered by NIH Grant) ​This 3½-day course is designed to introduce academic researchers to the principles of neurotherapeutic drug discovery and development, including the identification of a lead compound and IND enabling studies. The course considers the discovery and development of small molecule therapies and also includes considerations that apply to biological therapies, such as antibodies, antisense oligonucleotides, gene therapies and cell therapies. The course will also address the unique challenges inherent in developing treatments for nervous system disorders and will address the particular challenges that academic neuroscientists are likely to face in planning and conducting drug discovery research. You will find the course useful if you would like to learn how molecules to treat disorders of the nervous system are identified and evaluated prior to entering clinical trials. The course will be especially relevant if you conduct basic neuroscience research and would like to compete for the many translational grant opportunities that are available. The application period for the 2021 course offering is now open. The final deadline for applications is December 14, 2020. Course Directors expect to notify applicants of the status of their application in January 2021. A maximum of 45 students can be accommodated. [APPLY TODAY ](http://www.neurotherapeuticscourse.org/submit-an-application.html) #### 2. ASENT2021 Annual Meeting [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/ASENT2021-Header-1-1024x512.png "ASENT2021 Header (1) – Living Well With Epilepsy")](https://www.eventbrite.com/e/asent2021-annual-meeting-tickets-125915487613) **Event Dates:** February 22-25, 2021 **Event Format:** Virtual **Event Fees:** FREE to attend The ASENT2021 Annual Meeting is the only unique forum in American Neurology which brings together divergent areas of effort from industry, academia, advocacy and government on one platform with open dialogue. ASENT is pleased to welcome our faculty who include executive-level biohealth industry leaders, chairs of neurology and clinician scientists from leading academic institutions from around the world, chief scientific officers from advocacy organizations leading the way in funding neurotherapeutics and leaders from NIH, FDA, NINDS and many other agencies. **The meeting will take place virtually from Mon. Feb. 22 to Thurs. Feb. 25 2021 and the registration fee for graduate students, medical students and postdocs is FREE (*yes, free*!)**! #### Symposia Topics - COVID-19 and the nervous system as a therapeutic challenge - RNA editing and CRISPR technology: basic approaches and treatment implications for neurologic disease - New and Emerging Therapeutics for Epilepsy - Dystonia: Genetics, pathophysiology, new targets and treatment - Obstacles and Opportunities in Alzheimer’s Disease Neurotherapeutics - Epigenetics in Neurodegenerative Disorders - Emerging therapeutics in NeuroOncology - Brain Organoids as Models of Neurological Disorders and Treatment - Parkinson’s Disease New Approaches #### Learn more Click the link below to register and find more information about the conference. [REGISTER TODAY ](< https://www.eventbrite.com/e/asent2021-annual-meeting-tickets-125915487613>) #### 3. Present Your Science [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/abstract-submissions-header-1024x512.png "abstract submissions header – Living Well With Epilepsy")](https://www.eventbrite.com/e/asent2021-abstract-submission-tickets-126563507859) #### [ABSTRACT SUBMISSION DEADLINE: December 14, 2020](http://www.neurotherapeuticscourse.org/submit-an-application.html) **Event Dates:** February 22-25, 2021 **Event Format:** Virtual **Event Fees:** $25 for standard abstracts; $50 for late breaking abstracts ASENT2021 offers **several pipeline (rapid 5 min talks highlighting your research) and virtual poster presentations.** So if you have some exciting data to share on your neurotherapeutic research, even if you have already presented it at another scientific meeting, ASENT encourages you to **submit an abstract** (only $25.00!). Presenting your work will provide an opportunity to interact with experts to gain experience and increase your network! And potentially get more citations if your work is published in peer reviewed journals! [SUBMIT TODAY ](< https://www.eventbrite.com/e/asent2021-abstract-submission-tickets-126563507859>) #### 4. Extras! In addition to the opportunity to present leading-edge scientific content, participation in any of these opportunities also comes with several perks! - Access to full interactive virtual event - Exclusive Neurotherapeutics Pipeline presentations - Interactive Q&A, polling and roundtables - Live discussion boards - Virtual poster presentations - 1 Year ASENT Membership For more information on any of these opportunities feel free to email Caroline Foote at . ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Blog Relay, Epilepsy Research, Nov 20 EBR Posts **Tags:** cns, drug development, neurotherapeutics, R&D --- ### [Epilepsy in Kenyan Villages and why community matters](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-in-kenyan-villages-and-why-community-matters.html) **Published:** November 18, 2020 **Author:** Guest Contributor **Excerpt:** Rich shares his experience with epilepsy throughout Kenyan Villages. Despite fears and epilepsy myths, the community has agreed to form a Self Help Group where they meet once a month. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/rtsuma.jpg "rtsuma – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/rtsuma.jpg)Rich’s Story How important the November month is to my life, as I celebrate the Epilepsy Awareness Month as well as my birthday. #### The importance of family I have a family with two young girls and I am often thinking of the best way to ensure they’re not scared when I have seizures. The 3 year old always runs away calling for mummy, who immediately comes to my rescue. That’s an example of how important a family (meaning just the people we are close to) can be before episodes turn wild, creating even more injuries. Immediately after I had a family, levels of my seizures reduced as they’re always ready to remind me what to do and what not to do so I can stay safe. #### Managing stress You may know there are various types of epilepsy with different anti-epileptic drugs to control them, but I realized we can create our own tactics based on our lifestyles to help manage the condition. For instance, I decided not to feed my brain with any negative stuff however important it was to someone else, as it is automatic stress level raiser. This is because my health is a priority. The moment I refer to it as ‘junk’ or ‘not important’ to my brain, I will have reduced the number of seizures in a day. Some will refer to it as arrogance, but the few who are ready to learn more about Epilepsy will always pat your back & say “all is well”. #### Epilepsy in Kenyan Villages I have voluntarily been mobilizing persons living with epilepsy in my local Kenyan Villages for 3 years. As much as we try informing them on the need to visit hospitals for MRI Scans to determine the nature of their condition, unfortunately members of the community are held up with [traditional myths](https://livingwellwithepilepsy.com/2015/aboutus-lwwe/emilys-perspective/emilys-perspective-facts-and-myths-about-epilepsy.html) with regards to epilepsy. I personally take the initiative to visit these community members’ households to share with them my story, which is transforming them slowly. #### Transforming together The community has agreed to form a Self Help Group where they meet once a month share their experiences and [practice table banking](https://joywo.org/table-banking/) to economically empower them. The group has various goals including the following: - [Save towards their Medical Assessment](https://watsi.org/) - Ensure they’ve basic financial skills - Create a system aimed at recording their medical records for easy accessibility - Create a network of organizations or volunteers for any form of partnerships #### Short term goals The above can only happen through commitment of the members and care givers, since we base our unity on sharing experiences. We have decided to save towards a Mountain Bike that will increase our mobility to every household as it is more secure than other means of transportation. Since they’re in interior villages within the community a bicycle can easily access these areas. Any form of organization aimed toward sensitizing persons living with epilepsy is vital as it changes the mindset myths on epilepsy and aim towards empowering them to fit in the society and live a normal life. To learn more about how you can support this group contact Rich Tsuma directly on Twitter at [@RichardTsuma](https://twitter.com/RichardTsuma) or via email at . ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, Epilepsy Stories, Nov 20 EBR Posts --- ### [Four sleep strategies that work](https://livingwellwithepilepsy.com/epilepsy-blog-relay/four-sleep-strategies.html) **Published:** November 17, 2020 **Author:** Landis Wiedner **Excerpt:** It’s no secret that sleep and seizures are related. Sleep is like an epileptic’s drunk uncle. Most of the time he stays in line, but then there’s that wedding when he goes off the rails. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/pexels-ketut-subiyanto-4473863-683x1024.jpg "pexels-ketut-subiyanto-4473863 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/pexels-ketut-subiyanto-4473863-scaled.jpg)Landis on Seizures and Sleep It’s no secret that sleep and seizures are related. Sleep is like an epileptic’s drunk uncle. Most of the time he stays in line, but then there’s that wedding when he goes off the rails with a perfect rendition of the “Footloose” dance while “The Macarena” is playing. After an obsessive focus on getting “perfect sleep” and a series of accidents that became solid habits, here are a few moves I’ve learned to help me dance with my drunk uncle. ***Note: we’ve included a few affiliate links below just in case you want to get your hands on some of the items in the suggestions below*** #### #### **1. Celestial Seasonings SleepyTime Herbal Tea** The first time I tried [SleepyTime Tea](https://amzn.to/3lCJ80J) was because it was winter, I was cold, and my mom suggested it. This tea is so effective that twenty minutes later, my mom couldn’t understand what I was saying. My eyes heavy, speech slurred, I was convinced my mom laced whiskey in the tea. You can [check out the ingredients here](https://amzn.to/3lCJ80J)–it’s all natural baby. (Or at least that’s what I’m letting myself believe.) **Science behind this:** [A small 2011 study referenced in Slate magazine](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3198755/) **Personal experience:** 2.5 years #### 2. Pajamas are Sacred Now that we’re all living in sweats with the pandemic, it’s easier than ever for our daytime “outfits” to become our bedtime “outfits.” My [pajamas](https://amzn.to/35BJqj7) are ONLY worn in bed, which started due to my irrational germaphobia. [Pj’s](https://amzn.to/35BJqj7) must be clean and have zero contact with anything other than my sheets. Can’t bring those kitchen or living room germs to bed! I’ve even changed *out* of [pajamas](https://amzn.to/35BJqj7), then *into* pajamas before bed. But the (somewhat) logical side of me realized wearing clothes solely dedicated to sleep psychologically notifies my body that it’s time for some serious shut eye. **Science behind this:** Pending (currently conducting my own experiment) **Personal experience:** 13 years #### #### **3. Tucking in my Phone** I’d dropped my old phone so many times that the screen looked like a smashed car window from a country song. The new phone arrived in the mail before the protective case for it. Walking through my apartment, I cradled [my phone](https://amzn.to/3pANlog) in my hands like I was carrying a newborn. She couldn’t sleep in my room without her protective gear–what if I knocked her off the nightstand? I put her to sleep in the living room each night for her own safety. Soon I loved this habit of saying sweet dreams to my phone and continued it even after her case arrived. My bedroom is a sleep sanctuary, a place that no pinging notifications can bother or distract me. Sometimes a parent just needs space. **Science behind this:** I bet anyone in [*The Social Dilemma*](https://www.netflix.com/title/81254224) has some…but here’s some published in the [Journal of Applied Physiology](https://journals.physiology.org/doi/full/10.1152/japplphysiol.01413.2009) **Personal experience:** 6 months #### #### #### **4. Go to Sleep When You’re Sleepy** Mind-blowing concept, I know. Ironically, this is the one strategy with actual science to back it up. (Yes, I needed science to start doing this.) When I obsessed about the “right” way to sleep, I was in bed way before my 89-year-old Nana. The late nights when I slipped under the covers at 9:42, my heart raced with anxiety that I’d just set myself up for a seizure the next day. Regardless if I made my curfew or not, I was restless for hours, which only heightened my anxiety, and–shockingly–did not send me into a slumber It wasn’t until a neuropsychologist, who specializes in sleep management, told me, “Go to bed when you’re tired, not at a bedtime.” Getting that go-ahead from a doc made me feel like a kid who’d just been told she could stay up late to watch “I Love Lucy” reruns. Which is exactly what I did. Then I’d drag myself from the couch, incoherent from fatigue, and wake up the next day feeling horrible. The doctor had to clarify. “Not when you’re exhausted, but when you’re *sleepy*.” This distinction between tired and sleepy is hard to navigate, since–like many epileptics–I’m always tired thanks to those darling anti-seizure meds. After about a month of experimenting, I slowly was able to hear my body saying, “Go get in your pajamas, lady.” **Science behind this:** Yes! [Studies on Sleep Hygiene](https://www.researchgate.net/profile/David_Mastin/publication/7222661_Assessment_of_Sleep_Hygiene_Using_the_Sleep_Hygiene_Index/links/54e653b40cf2bff5a4f52da5.pdf) **Personal experience:** 5 months #### Sleep well! With these strategies, you and your drunk uncle will be dancing the “Electric Slide” together in no time.\* If you want to chat about these tactics, epilepsy in general, or why miniature plastic animals make the best gifts, please reach out to me on Twitter at [@billietopanga](http://twitter.com/billietopanga). \*No science behind this claim, either. #### #### For more on sleep and epilepsy read: [Sleep and Epilepsy: Listening to Your Body Clock](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/sleep-and-epilepsy.html) ![author avatar](https://secure.gravatar.com/avatar/19f5d1347b7f55432fb2ccf0b0547690de128dddd6f088aac79df9f670cd34f1?s=300&d=mm&r=g) Landis Wiedner Landis is a Chicago-based writer, whose work has been featured on [NBCNewsTHINK](https://www.nbcnews.com/THINK), [Wired](https://www.wired.com/) and [Chicago Tribune](https://www.chicagotribune.com/). She is a writer and Editor for Living Well With Epilepsy. Landis brings a humorous perspective to life with epilepsy. Diagnosed at 32 years old, she sheds light and laughs on managing a new life with seizures. Landis strives to create a touchstone for the chronically ill and those who support them. She is currently finishing a humorous memoir, “My Brain Tumor’s Boyfriend.” [See Full Bio](https://livingwellwithepilepsy.com/author/landiswiedner) [ ](https://livingwellwithepilepsy.com/author/landiswiedner) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://twitter.com/BillieTopanga) **Categories:** Epilepsy Blog Relay, Nov 20 EBR Posts, Sleep --- ### [Alison shares her experience with a 16 day stereo-EEG stay](https://livingwellwithepilepsy.com/epilepsy-stories/alison-shares-her-experience-with-a-16-day-stereo-eeg-stay.html) **Published:** November 16, 2020 **Author:** Alison Kukla **Excerpt:** Alison shares her journey from to neurocognitive testing to her stay in an Epilepsy Monitoring Unit (EMU) for a 16-Day stereo-EEG(sEEG). **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/Screen-Shot-2020-11-15-at-1.05.50-PM-1024x980.png "Screen Shot 2020-11-15 at 1.05.50 PM – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/Screen-Shot-2020-11-15-at-1.05.50-PM.png)Alison’s Story My seizures started my freshman year of college after I participated in a 24-hour university fundraising event. I came back to my dorm, feel asleep, and woke up in the hospital. Little did I know, I had experienced a generalized tonic clonic seizure that night, which woke up my roommate. Since that 1st seizure in 2006, my seizures have changed to [focal impaired awareness seizures](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/focal-seizures-with-todds-paralysis.html) and my seizure frequency has varied over the years. Some years only 5 seizures, other years over 60 seizures. But they all have one thing in common – my seizures happen without warning, which is the scariest part for me. I’ve had them alone in an airport, on public transit, walking by myself to meet friends, while driving leading to an accident, and at work. [Once during a seizure at work](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/when-a-seizure-happens-at-work.html), I unknowingly hugged a coworker, but luckily it was a friend and he knew about my epilepsy, so it wasn’t awkward. #### Uncontrolled Seizures My journey with epilepsy continues, since my seizures still aren’t controlled. For the past year, I’ve been going through various tests – [Neuro Cognitive](https://braincheck.com/articles/what-is-neurocognitive-testing/), [Wada Test](https://www.hopkinsmedicine.org/health/conditions-and-diseases/epilepsy/wada-testing), etc. – as part of the epilepsy pre-surgical evaluation process. This time last year I was preparing for my second stay in an [Epilepsy Monitoring Unit (EMU)](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/tips-for-an-epilepsy-monitoring-unit-emu-stay.html), but this time for a [stereo-EEG (sEEG)](https://www.sciencedirect.com/topics/medicine-and-dentistry/stereoelectroencephalography). A sEEG is a minimally invasive procedure that uses electrodes placed directly in the brain to identify where seizures start. This was the last stage of my pre-surgical evaluation with the goal of learning exactly where my seizures start. It was a long 16-day stay in the EMU, but we learned a lot. We learned that my seizures start in both sides of my brain and that I’m a candidate for an [RNS device](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/my-journey-with-rns-surgery.html). #### Reader Poll #### Seizure Free Streak Using what we learned, I moved ahead with switching my medicines and I recently went 8 months seizure free, which is my longest seizure free streak in over 4 years. I did have a breakthrough seizure this month, but I think about the different treatment options the sEEG taught me I have now, and I feel hopeful. I’m so grateful we did the sEEG, since we learned such valuable information to guide my care. I also say we since my husband was there by my side for the entire stay and I can’t imagine doing that stay without him. ![author avatar](https://secure.gravatar.com/avatar/b858d85edb0dbdacad4f1ebeed02cd96c3b494def6cef9fd5fe143caf3bab10a?s=300&d=mm&r=g) Alison Kukla Alison Kukla, MPH, is a tested leader with demonstrated success in coalition building, campaign management, and engagement strategy development in a variety of fields at the local, state, and federal level. Alison is a public health professional with a Master of Public Health in prevention science from Rollins School of Public Health, Emory University. Alison is also a Person with Epilepsy, an Epilepsy Advocate and formerly staff in the Obama White House and EPA. [See Full Bio](https://livingwellwithepilepsy.com/author/alisonkukla) [ ](https://livingwellwithepilepsy.com/author/alisonkukla) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/alisonckukla) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://twitter.com/alisonkukla) **Categories:** Epilepsy Blog Relay, Epilepsy Stories, Nov 20 EBR Posts --- ### [Raising epilepsy awareness in Uganda](https://livingwellwithepilepsy.com/epilepsy-stories/raising-epilepsy-awareness-in-uganda.html) **Published:** November 14, 2020 **Author:** Guest Contributor **Excerpt:** This year has been so difficult for everyone, but for people living with Epilepsy in Uganda the situation has become unimaginable. Gideon Ronie is doing something about it to support what he refers to as the Epilepsy Awareness Uganda family. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/Screen-Shot-2020-11-14-at-9.40.59-AM-1024x914.png "Screen Shot 2020-11-14 at 9.40.59 AM – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/Screen-Shot-2020-11-14-at-9.40.59-AM.png)Epilepsy in Uganda My name is Gideon Ronald Akanyijuka, CEO of [Epilepsy Awareness Uganda ](https://www.epilepsyuganda.com/)(EAU). EAU is a Non Governmental Organization that brings together all persons affected by epilepsy in Uganda. This year has been so much difficult for everyone, but for people living with Epilepsy, it has been so much more difficult. #### Epilepsy and Covid19 Considering that there was a lockdown in Uganda, a total lockdown for three months, getting medication was so difficult. And this made the conditions of most people living with Epilepsy worsens. Having less or no meals even when they have to take medication made it worse. We received so many calls from our Epilepsy Awareness Uganda family who needed help but we could only reach out to few, due to fewer funds available. #### Supporting our members Though the year has been difficult we have had some good times as well. We received donations of wheelchair to one member, Fred, who really needed a wheelchair for easy movement. We have also received masks and sanitizers to distribute to our epilepsy family. We also had a member who was afraid to open up to his wife about his epilepsy, but after talking to him he was able to tell the wife the truth. Epilepsy Awareness Uganda was able to provide the family with food and the member was concerned about telling his wife about the organization. We are excited that member family now has open communication about epilepsy in their home. #### Lockdown in Uganda Lockdown has since eased up and as the country is getting used to the new normal, nothing big has changed to our epilepsy community. Finding medication is still difficult, and many more needs. The encouragement we all give to each other matters a lot. It will get better! --- #### To support If you are interested in supporting the [Epilepsy Uganda](https://www.epilepsyuganda.com/) family, whether it be through a donation of masks and sanitizer or with a financial contribution, you are encouraged to contact Gideon directly at or on Instagram at [@epilepsy\_awareness\_uganda\_](https://www.instagram.com/epilepsy_awareness_uganda_/). ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, Epilepsy Stories, Nov 20 EBR Posts **Tags:** epilepsy uganda --- ### [Amanda poses a philosophical question about quality of life and epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-and-quality-of-life.html) **Published:** November 10, 2020 **Author:** Guest Contributor **Excerpt:** Amanda asks us to consider how can we measure our quality of life with the overarching consideration that is epilepsy? We have struggles, unquestionably. Life is different, for every single day and will always be. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/Marathon-1-Victoria-2017-e1604980419946.jpg "Marathon 1 Victoria 2017 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/Marathon-1-Victoria-2017-e1604980419946.jpg)Amanda’s Story I think the first thing is to acknowledge that the extent of “quality” means different things to different people. There are lots of different ways to measure quality of life. We have a lot of different ways to look at what “quality” means. Is quality the institution we attend for a post-secondary education? Is quality defined by a career, and then further is it about a career that brings financial success or is it happiness? Is it being in a romantic relationship or is it complete independence? Quality of life can be interpreted as a sense of self-awareness and peace. Is it creative accomplishments in any exciting or relaxing degree? “Quality of life” is all of those things or just one. We need to acknowledge that these are different things to different people. #### Measuring quality of life How can we measure our quality of life with the overarching consideration that is epilepsy? We have struggles, unquestionably. Life is different, for every single day and will always be. The measure though, that is where we find our quality of life. I would recommend to anyone (in any circumstance) to reflect on what exactly it would mean for them to have a good quality of life before trying to make the assessment. If you had a perfect world, what would that mean? I used to think that for me, a good quality of life only meant a financially-stable, brag-worthy, professional career. Everything else was unessential. Now, I don’t know whether I was wrong or if as I got older I changed, but either way, that is not MY sole definition (it’s not really part of my definition anymore at all). #### Quality of life, redefined Here are the things I love. I love running. I love writing. I love blogging and sharing stories about epilepsy. I love costumes and doing extreme costume makeup. I love my friends. I love my family. Painting and strength training are new to this year, but maybe one day I will LOVE them too. One day maybe I will try cooking and love it. I know I love a really amazing Flat White and being able to sit outside and enjoy it. I love watching movies. I love singing in the shower. My measurements don’t have to be the same as anyone else. The things that make my life full can change and evolve. Some of the things I choose are outwardly active. Some are introspective. Some take physical strength and some take emotional strength. Some I share with the world and some are just for me. Some of them are a combination of all of that. I enjoy that there is the variety and not just one way that I get to challenge myself. #### Epilepsy ever and always – constantly aware Epilepsy. Epilepsy is always going to play a part in my life. Twice a day, every day, I take medications and I have to be constantly aware that I have a supply. I always carry my pill-tray in my purse when I leave my apartment. I could never ignore my condition. It’s just not going to happen. Knowing that, why would I try? The things I love can still be loved and enjoyed while being epileptic. After the last seizure I had, I couldn’t run, but I could read and I could watch movies. I couldn’t quite make proper sentences so I chose not to write or blog, but I was able to sit and enjoy good coffee slowly. #### Not hoping, but deciding Quality of life is a series of choices. It’s not just a matter of hoping for the best thing to come along and suddenly everything will be perfect. Part of it is *deciding.* That includes considering what we want to be able to accomplish, even if it goes against what might be the smoothest course. Maybe it is a marathon. I was told a long time ago that I would not be able to engage in sports because of my condition. I chose to ignore that and my life has been better for it. This overall blog is about running and epilepsy. I could go on forever describing the physical and mental sensations of accomplishment and triumph that I experienced the first time I ran a marathon. The choices we make will define our quality of life. We can think about the things that make our lives harder or different, like epilepsy maybe, or we can choose to focus on the things we do have, that we do love. Quality of life is what we experience. We can try to measure it without including our condition. We can also just incorporate our conditions into our quality of life. Education. Careers. Love. Family. Strength. Spirituality. We have different measurements for what will give us the quality of life we love. All can be fulfilling. Choice. Experience. Decisions. Struggles. Flexibility. Acceptance. We have epilepsy or know someone who does. It’s just a medical condition. #### No limits The only restrictions to having an amazing, fabulous, rewarding, loving, incredible quality of life while having epilepsy are the ones we put on ourselves. How much more would our worlds be if we chose to disregard superfluous limits or the measurements of others? Let’s focus on the things we have, what we can do, and the positive world around us. We have epilepsy. We can choose to have a great quality of life. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** About Epilepsy, Epilepsy Blog Relay, Epilepsy Stories, Nov 20 EBR Posts --- ### [My Journey with RNS Surgery: Hope for Seizure Freedom](https://livingwellwithepilepsy.com/epilepsy-stories/my-journey-with-rns-surgery.html) **Published:** November 7, 2020 **Author:** Soo Ihm **Excerpt:** Living with epilepsy is a challenge and finding the right treatment can be difficult. Soo shares her experience of trying medication, VNS, and RNS to treat her epilepsy. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/IMG_1593-768x1024.jpg "IMG_1593 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/IMG_1593-rotated.jpg)Soo’s Story Living with epilepsy is a challenge, to state it mildly. We go through each day hoping we won’t have another seizure, and yet they come. Finding the right treatment is the big question mark. Since there are so many types of seizures and epilepsy syndromes, epilepsy is extremely difficult to deal with. But despite our challenges, especially in these times, I still think there is reason to hope. #### Evaluating Surgery Options for Epilepsy It has been a long time coming. I have been evaluated for brain surgery several times over the years, and the answer was always “no.” I have focal seizures, coming from the temporal and parietal lobes. In the past, the foci were too scattered, so that disqualified me as a surgery candidate. This time around, I had two options. First, if there was a clear focus that could be taken out safely, they would do a resection. If that could not be done, they would implant an RNS. When they evaluated me, the first option was thrown out, so I went with plan B. #### VNS vs RNS Six years ago, I had a [VNS](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/vns-in-belgium.html) (vagus nerve stimulator) implanted; however, it did not work. Thanks to the latest in medical technology, I have another chance. I got the [RNS](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/a-positive-approach-to-an-epilepsy-diagnosis.html) (responsive nerve stimulator) implanted in June this year. Originally, I was going to have the surgery last year in November, but at the time the hospital was waiting for a robot to assist in the surgery, and it had not arrived yet. When the robot did arrive at the beginning of the year, the challenge was then getting a hospital bed. The date that was available was in March. Then COVID-19 hit. I had to wait another three months before they gave the okay to proceed with the surgery. #### Surgery Recovery The surgery itself went rather smoothly. I was lucky because I was allowed to have one visitor. Soon afterward, the hospital changed its policy and did not allow any visitors, not even family. The first part, where they put electrodes in your head to find exactly where the seizures are coming from, was not bad. I had no pain whatsoever. I was good to go and let my brain recover for step two, which was the implant. The interesting thing is, during the recovery time, I had a string of seizure-free days. The second part was much more difficult. They downplay all the risks of surgery, saying there is only a 1-2% chance of something going wrong. However, it was scary when I needed to wear an oxygen mask after my RNS was implanted. I was in the ICU for two days. I consider myself very lucky, however. There have been cases of infection during an RNS surgery, and it is not a pretty picture. When I got home, for two weeks, I suffered horrible headaches and was on a diet of yogurt, soup, Tylenol, and the tender loving care my family gave me. This was what really sustained me throughout my recovery. I could not have gone through it without them. All the TLC I received from them more than made up for my physical pain. Just the fact that they were there giving me care and attention, made me feel special. --- #### RELATED: [Living with RNS and VNS](https://livingwellwithepilepsy.com/2020/epilepsy-blog-relay/mar-20-ebr-posts/living-with-vns-and-rns.html) --- #### Support from the community I have a good network of support from my community. The epilepsy community in Orange County, California is very strong. We have a wealth of resources here, including excellent epilepsy centers and support groups. They all advocate for our health and well-being, in the pursuit of the end goal: seizure freedom. #### Resources [Epilepsy Support Network of Orange County](http://esnoc.org) [Epilepsy Foundation of Orange County](https://epilepsyorangecounty.org/) ![author avatar](https://secure.gravatar.com/avatar/d52fbb50f14201cb1c4aa52292adb331e89b5086a1db0c1711fed2af943b5367?s=300&d=mm&r=g) Soo Ihm Soo writes the blog Soo’s Epilepsy Corner and is a regular contributor to Living Well With Epilepsy. She lives in Orange County, California. She enjoys traveling, and has been to Europe three times. Her next journey will be just as interesting, with the RNS. [See Full Bio](https://livingwellwithepilepsy.com/author/sooihm) [ ](https://livingwellwithepilepsy.com/author/sooihm) **Categories:** Epilepsy Blog Relay, Epilepsy Stories, Nov 20 EBR Posts, Treatments **Tags:** epilepsy surgery, RNS --- ### [Finding real support in the online epilepsy community](https://livingwellwithepilepsy.com/epilepsy-blog-relay/finding-real-support-in-the-online-epilepsy-community.html) **Published:** November 9, 2020 **Author:** Hayley Jacobs **Excerpt:** Hayley has shared her experience with online epilepsy support communities to help those who are newly diagnosed with epilepsy.  **Content:** #### [![Hayley's epilepsy story](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/IMG_20201031_115142_978-897x1024.jpg "IMG_20201031_115142_978 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/IMG_20201031_115142_978.jpg)Hayley’s Story I’ve chosen to write about my experience with support communities to hopefully help people who are newly diagnosed with epilepsy. Alternatively, for those who don’t use them already I hope this will help you understand more about what these groups can offer, how they can be accessed and also, how to avoid any pitfalls. Firstly, I think that in these times of a non-contact society, using online (and telephonic) support while you negotiate your own (or someone that you care for) journey with epilepsy has taken on an extra dimension of necessity. Many of us have experienced cancellation of face to face hospital appointments or limited access to everyday medical support and so, if you have been thrust unwittingly into the digital world to manage the medical element of your epilepsy, now is a great time to see what else is out there in terms of support from the wider epilepsy community. #### NGOs and Nonprofits The first “tier” (because we know everyone loves a tier, yawn!) of these are the official charities and organisations. In Britain, we have the [Epilepsy Society](https://www.epilepsysociety.org.uk/) and [Epilepsy Action](https://www.epilepsy.org.uk/), both charities which provide excellent resources in terms of fundraising, research and offering contact with trained advisors who can talk to you about challenges you might be facing related to epilepsy. These include helping you understand how to access practical support (what accommodations the UK government makes to make life easier for people with epilepsy for example or how to make your home safer), offering a friendly ear if you are struggling with your mental health and, although they can’t offer medical advice, they can point you in the right direction of those who can. #### Online Resources Organisations like [Living Well with Epilepsy](https://livingwellwithepilepsy.com) can also share information, articles from medical professionals and bloggers. These platforms are regulated and reliable, so you can use them safe in the knowledge that what you find is factually correct. They are a great starting point for learning more about epilepsy and separating fact from fiction. Their only disadvantage is they aren’t “personal”, so you might not be able to find anything to help deal with your specific predicament. #### Social media support groups The next element of the epilepsy support network I’d like to talk about is social media groups. There are a HUGE range of these across pretty much every platform and they cater for every element of epilepsy you can think of. In this sense they are great because you can reach out to people who know what you are going through because they are living it. They will understand in a way that the people living around you and even the most qualified neurologist out there will not. You can narrow your choices by field; type of epilepsy, gender (this isn’t as discriminatory as it might sound, lots of women suffer from epilepsy which is specific to their hormonal cycle so it make sense so have groups just for them…..there may also be groups just for men as well, I haven’t personally looked), specific activities and how epilepsy impacts them e.g. sport or employment. You can also join groups to share experiences with other parents of children with epilepsy if this is your specific need. I am a regular user of epilepsy social media pages. I use some for advice and support and some just for fun; for example I follow a lady on Twitter called [@EpilepticRuner (RunAngieRun)](https://twitter.com/EpilepticRuner) who blows my mind. I found her when I was looking for advice about building stamina whilst taking anti-epileptic medication because I wanted to start running again and was finding it hard going. It terms of what she does there wasn’t really much that was relatable to me (she regularly runs 100km+ ultra-marathons despite having uncontrolled seizures and being on a big cocktail of medication) whereas I still haven’t made it back past a very sedately paced 10km (I used to be a reasonably good distance runner) and so I don’t draw inspiration from her as such, but I still like to see what she’s up to and what challenge she has set herself to complete next. Her own personal dedication is next level! #### Getting past the motivational quotes When you’re feeling low (which is an inevitable part of dealing with epilepsy) social media groups are a great place for instant sympathy. I personally HATE the vast majority of motivational quotes but I know they help lots of people and occasionally one will pop up which will resonate with me, Instagram is awash with this kind of quick “pop in and get a virtual hug” type of support. The groups available via Facebook are more specific and as long as you can turn a polite blind eye to the “thoughts and prayers” which are always on offer if they aren’t your cup of tea, if you want to share your experiences in a closed forum these groups do act as free therapy, especially as there isn’t really much in the real world in terms of support for those suffering with long term medical conditions (same issue as previously mentioned, you can be the best psychotherapist in the world but until you’ve lived it, there are limits as to how well you can empathise with it). The people are usually nice, the groups are usually well moderated and perhaps most importantly they are easily accessible, so if you are bed/sofa bound and feeling sad and sore because you’re recovering from a tonic clonic or medication side effects you can still find someone to talk to. #### Why social media groups are great, but not perfect I do however feel like I would be irresponsible to advertise these groups without explaining why they aren’t perfect, especially for people who are going through diagnosis or are new to epilepsy. It really and truly is almost like a whole set of cyber-safety rules should exist for medical support groups. **1. They’re global** Firstly, they are often global, which is great for always having someone available but, medical services, medications, laws regarding issues like driving and benefits and alternative therapies vary massively from one country, state and continent to the next so it is very important to understand that whilst someone can give you advice, it doesn’t necessarily meant the same thing will be applicable where you live. Take heed. **2. Everyone’s experience is different** Secondly, everyone’s experience with epilepsy is different, and whilst it can feel amazing to find someone who shares the same symptoms and has been prescribed the same medication as you (trust me, it really does feel unbelievable to find these people in your darkest hours when you feel totally lost and confused) you HAVE to keep this in perspective. It is a condition which can take random twists and turns at any point for no discernible reason and therefore you can easily set yourself up for a fall if you find a “kindred spirit” only to find out they are being weaned off medication in six months time or a candidate for the surgery you’ve begged for but been refused. I can also not stress strongly enough how important it is that you must NEVER take medical advice from any online social media platform. We might all share experiences and in some cases run professional epilepsy organisations but we are NOT trained neurologists and advice regarding medication and treatment should only come from YOUR doctor or nurse. **3. Some topics can be scary** Lastly, by nature, some of the topics are scary, and if you are feeling vulnerable, epilepsy social media forums aren’t always the best place to be. It’s very important that the profile of SUDEP (Sudden Unexpected Death in Epilepsy) is raised and if you or your loved one has epilepsy you SHOULD talk about your own risk factors with your medical practitioner but I fully appreciate if you just popped on to talk about period pain having your own mortality discussed is truly terrifying. **4. Boundaries are good** People WILL also want to talk about their mental health and depression and anxiety, and sometimes by nature shared experiences can bring you down instead of up….all it takes is for you to be in the wrong mindset and a few people discussing their depression when you perceive their lot to be better than yours can send you on a downward spiral. In these instances I would advise, don’t leave the groups but do take a break, come away from social media and do something grounding and gentle. Learn to recognise when things are making you feel good and when they aren’t, know what you need to do to remove yourself from the situation. This is of course a huge advantage of online contact, I know it is addictive but it’s also not a physical room you are stuck in, you can just walk away at any time. #### Remembering you are not alone Despite all these things which you should be aware of, I am a firm advocate of the online epilepsy community and I think it is definitely the best place to go to help normalise what you are going through. I can’t promise it’s the right path for everyone but in these, often lonely times I would recommend you try it, and experiment for find what works for you. My own condition is currently not fully controlled but it is stable and I am still a regular visitor. It’s nice to be in the position to be able to “pay it forward” and help others who are beginning their journey, offer reassurance and to share in other people’s victories, no matter how small. It’s not a community any of us chose to be in, but since we are all stuck with it, there isn’t any need for it to be a storm you weather alone. ![author avatar](https://secure.gravatar.com/avatar/bb67b1e45d0e80a2c87ad47e6bebcb92c477042f0211c4104141de3fe2b83507?s=300&d=mm&r=g) Hayley Jacobs [See Full Bio](https://livingwellwithepilepsy.com/author/hayleyj101) [ ](https://livingwellwithepilepsy.com/author/hayleyj101) **Categories:** Epilepsy Blog Relay, Newly Diagnosed, Nov 20 EBR Posts **Tags:** epilepsy support --- ### [Living with Hypothalamic Hamartoma Syndrome](https://livingwellwithepilepsy.com/epilepsy-blog-relay/living-with-hypothalamic-hamartoma-syndrome.html) **Published:** November 6, 2020 **Author:** Guest Contributor **Excerpt:** It is estimated that 1 in around 200,000 people is born with a hypothalamic hamartoma (HH), an epileptogenic lesion attached to the hypothalamus. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/09/gr2-300x186.jpeg "Anales de Pediatría – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2020/09/gr2.jpeg)Image Credit Anales de Pediatría Journal of The Spanish Association of Pediatrics*This story was originally shared by Emma Nott, Secretary Hope for Hypothalamic Hamartomas, Secretary ePAG ERN EpiCARE 15 September 2020* It is estimated that 1 in around 200,000 people is born with a hypothalamic hamartoma (HH), an epileptogenic lesion attached to the hypothalamus[\[1\]](#_ftn1). However, HH syndrome is so rare, its hallmark seizure-type so unusual, and its co-morbidities so often attributed to other developmental conditions such as autism, ADHD and oppositional defiance disorder, that it would be no great shock to discover a much higher prevalence than received wisdom currently suggests. #### Rare Epilepsy Syndromes As with many rare epilepsy syndromes, diagnosis is not straightforward, and for many sufferers it comes much too late. In fact, a significant proportion of those with this paediatric epilepsy syndrome are not accurately diagnosed until adolescence or even adulthood – sometimes after devastating and wrong surgical intervention. One such person is Carrie Fulcher, President of the UK Chapter of Hope for HH. Carrie was misdiagnosed throughout her childhood, adolescence and beyond, into adulthood and motherhood. A succession of radiologists did not detect her HH and told her that her MRIs were normal. Because her seizure activity was displaying itself in the temporal lobe, she was eventually diagnosed as having right temporal lobe epilepsy, which led to a wholly unnecessary temporal lobectomy in 2013. After further deterioration, a more senior radiologist reviewed the MRI and at that point HH was detected. The wholly erroneous and irreversible surgery has affected Carrie cognitively, and caused lasting and debilitating anxiety and depression. Unsurprisingly, Carrie is determined that this should not happen to anyone else. #### Hypothalamic Hamartoma (HH) HH can cause many types of seizures and other symptoms. However, its hallmark seizure type is [gelastic seizures](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/epilepsy-blog-relay-gina-on-gelastic-seizures.html) – sudden episodes of uncontrolled, often mirthless, laughter\[2\]. In infancy gelastic seizures can be mistaken for reflux or colic. Infants with HH may miss critical developmental milestones in speech, crawling, walking and cognition. Diagnosing the initial seizures can be hard since symptoms are usually missed or not considered seizures at first. Paediatricians may dismiss parental reports of what is in fact seizure activity as rather describing developmental or autistic-style behaviours. If an EEG is ordered, the results can be misleading, often appearing normal or showing minor changes or non-specific abnormal findings in children.\[3\] This can lead to a clinician mistakenly ruling out seizures. #### MRI and other diagnostic tools HH can be definitively diagnosed through MRI, performed to a specific protocol\[4\]. While a properly performed and correctly read MRI scan should bring the diagnostic odyssey to an end, unfortunately for many sufferers the journey continues. HHs are categorised by experts according to size and the nature of their attachment within the hypothalamus; some are small, some are ‘giant’\[5\]. A giant HH is difficult to miss on an MRI scan; not so the smaller lesions. Even experienced neuroradiologists struggle to identify smaller HHs, perhaps because they are more accustomed to looking for anatomical lesions in the cortex (the more typical location of seizure onset) than in subcortical regions. A significant proportion of our patient community has been advised by the first instance neurological team that their MRI has ruled out HH, only for a specialist HH or epilepsy centre to diagnose HH upon second opinion. #### Related endocrine issues In about a third of cases the HH creates significant endocrine issues; in particular, it can cause precocious puberty\[6\]. In such cases is it often the precocious puberty that provides the clue that leads to accurate diagnosis, notwithstanding a longer-standing history of seizures in the patient. One parent of a two-year old girl who showed symptoms of menstruation, has described her situation as ‘fortunate.’ She believes that without the precocious puberty diagnosis, which then led to discovery of an HH, her daughter – said by her paediatrician to be autistic – would have continued to have been misdiagnosed and continued to have deteriorated cognitively and behaviourally. Accurate, early diagnosis is critical, as timely surgical intervention can control or significantly reduce the seizures and arrest cognitive and behavioural decline\[7\]. We do not yet know the cause in all cases of HH but believe genetic factors contribute to many of them. A small percentage of children with HH have Pallister Hall Syndrome, an inherited genetic condition where abnormalities of the GLI3 gene affect changes in the way other parts of the body develop: that may include extra fingers or toes, changes in hormone function, bifid epiglottis, imperforate anus and kidney abnormalities\[8\]. However, the majority of HH cases are not inherited from a parent, and instead arise randomly in the child. In such cases patients and families are regularly told by their clinicians that since the HH is sporadic and not apparently syndromic there is no reason for genetic investigation. A team of scientists at the University of Melbourne is currently examining tissue from ‘sporadic’ HHs removed by surgery. In about one third of HHs examined to date, there is an abnormality in the GLI3 gene, or a related gene with a similar function during development. Abnormalities in other types of genes may cause HH and there is active research underway to find these.\[9\] #### The role of genetic couselling Genetic counselling is recommended for all individuals with Pallister-Hall syndrome where the GLI3 gene abnormality has been transmitted from a parent to their child because the same abnormality can be passed on to other children.\[10\] It is not currently recommended for non-syndromic cases however that may change depending on further research. From the patient point of view, the uncertainty over the causes of HH – and the current reluctance of the clinician to refer for genetic counselling in the absence of signs of Pallister-Hall Syndrome – is frustrating. A definitive answer regarding the cause of a child’s HH may help inform the parental approach to treatment, and also to family-planning – for both the parents and, in future, for the child and any siblings. On occasion, genetic testing might form part of the diagnostic odyssey: in one case, neurologists and radiologists at different epilepsy centres disagreed whether HH was indicated on the patient’s MRI. The diagnosing team pointed to the clinical manifestation of repetitive, short bursts of unexpected, uncontrolled laughter – gelastic seizures – as supporting the presence of a small HH visible on the MRI. The other team countered that the MRI showed no more than a slight thickening of the third ventricle wall, and that the laughing episodes were equally consistent with behavioural manifestations of autism. EEG and VEEG were inconclusive. Having to choose between the two teams – both eminent, both certain – the parents were ultimately assisted by a genetic test revealing a previously unreported genetic mutation on the GLI3 gene. Consequent Gamma Knife surgery significantly ameliorated the behavioural and cognitive dysfunction caused by the HH. This case concerned my son, who was seven years old at the time. He had been consistently misdiagnosed until that age as having childhood autism and ADHD. #### Hope for Hypothalamic Hamartoma More than a decade later – notwithstanding the efforts of Hope for HH and the expert doctors who guide us – parents come to us with similar stories. Even when HH – or seizure activity – is suspected, there appears to be a reluctance by the treating clinician or hospital to refer the patient on to a specialist epilepsy centre. MRIs are still being performed to a standard protocol, rather than to the protocol advised by paediatric epilepsy experts; MRIs are still being misread. Parents are still being advised that because their child’s EEG is normal, seizures can be ruled out. This is one of the reasons why we at Hope for HH believe it is so important to have an International HH Awareness month, incorporating the first International HH Awareness Day this 15th September. If doctors do not know what HH or gelastic epilepsy is, then they cannot diagnose it. If they do not refer a patient with suspected seizures to a specialist epilepsy centre, then that patient’s outcome is likely to be sub-optimal. If they misdiagnose the fact or the cause of the seizures, the consequent treatment – or lack of treatment – might be catastrophic. We are rare – ultra-rare. Sadly, due to the perils of the diagnostic odyssey, we are probably not as rare as we would like to think. *Originally shared by Emma Nott, Secretary Hope for Hypothalamic Hamartomas, Secretary ePAG ERN EpiCARE 15 September 2020* --- #### References: \[1\] Berkovic, S.F., Arzimanoglou, A., Kuzniecky, R., Harvey, A.S., Palmini, A., Andermann, F., 2003. Hypothalamic Hamartoma and Seizures: A Treatable Epileptic Encephalopathy. Epilepsia 44(7), 969-973: \[2\] Berkovic, et al 2003; Kerrigan, J.F., Ng, Y.T., Chung, S., Rekate H.L., 2005. The hypothalamic hamartoma: a model of subcortical epileptogenesis and encephalopathy. Semin Pediatr Neurol 12(2):119-131. \[3\] Kerrigan et al, 2005 \[4\] Berkovic et al, 2003 \[5\] Delalande O, Fohlen M: Disconnecting surgical treatment of hypothalamic hamartoma in children and adults with refractory epilepsy and proposal of a new classification. Neurol Med Chir (Tokyo) 43:61-68, 2003 \[6\] Harrison, V.S., Oatman, O., Kerrigan, J.F., 2017 Hypothalamic hamartoma with epilepsy: Review of endocrine comorbidity. Epilepsia 58(Suppl 2):50-59. \[7\] Berkovic et al 2003; Kerrigan et al 2005 [https://onlinelibrary.wiley.com/doi/full/10.1111/epi.13752; ](https://onlinelibrary.wiley.com/doi/full/10.1111/epi.13752) \[8\] Biesecker, LG., 2000. Pallister-Hall Syndrome. In: Adam MP, Ardinger HH, Pagon RA, et al., eds. *GeneReviews®*. Seattle (WA): University of Washington, Seattle. \[9\] Hildebrand, M.S., Griffin, N.G., Damiano, J.A., Cops, E.J., Burgess, R., Ozturk, E., Jones, N.C., Leventer, R.J., Freeman, J.L., Harvey, A.S., Sadleir, L.G., Scheffer, I.E., Major, H., Darbro, B.W., Allen, A.S., Goldstein, D.B., Kerrigan, J.F., Berkovic, S.F., Heinzen, E.L., 2016. Mutations of the sonic hedgehog pathway underlie hypothalamic hamartoma with gelastic epilepsy. American Journal of Human Genetics 99(2), 423-429; Fujita, A., Higashijima, T., Shirozu, H., Masuda, H., Sonoda, M., Tohyama, J., Kato, M., Nakashima, M., Tsurusaki, Y., Mitsuhashi, S., Mizuguchi, T., Takata, A., Miyatake, S., Miyake, N., Fukuda, M., Kameyama, S., Saitsu, H., Matsumoto, N., 2019. Pathogenic variants of DYNC2H1, KIAA0556, and PTPN11 associated with hypothalamic hamartoma. Neurology 93(3), e237-e251. \[10\] Biesecker, 2000 ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** About Epilepsy, Epilepsy Blog Relay, Nov 20 EBR Posts --- ### [Sleep and Epilepsy: Listening to your body clock will help your seizures](https://livingwellwithepilepsy.com/epilepsy-stories/sleep-and-epilepsy.html) **Published:** November 3, 2020 **Author:** Guest Contributor **Excerpt:** Dr. Sameh Morkous explains how improving sleep can help with seizure control and in turn controlling seizures will likewise improve sleep. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/11/My-photo-300x232.jpg "My photo – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=22489)This blog post was submitted by [Dr Sameh Morkous, Chief, Pediatric Neurology & Medical Director, Pediatric Sleep Disorders Center at Lehigh Valley Health Network](https://www.lvhn.org/doctors/sameh-morkous). Clinical Professor, Philadelphia College of Osteopathic Medicine (PCOM) & DeSales University & Associate Professor, collaborative with Morsani College of Medicine at the University of South Florida #### The interplay between sleep and epilepsy Sleep appears to be a passive and restful time, but it actually involves a highly active and well-scripted interplay of mental activities. Epilepsy \[1\] is a heterogeneous neurological condition with recognized strings to sleep health & wellness. Epilepsy and sleep share a bidirectional relation where improving sleep and treating sleep disorders can help with seizures control and also controlling seizures especially, if these occur at night, will likewise improve sleep. Seizures are sudden uncontrolled electrical disturbance in the brain. Seizures influence sleep quality and stability. Seizures especially at night can disturb our sleep. Some anti-seizure medications that are used to treat seizures may improve sleep by providing better seizure control and sleep quality. However, other seizures medications cause side effects like for instance problems falling asleep or staying asleep or alternatively excessive sleepiness all of which can influence our sleep. #### Effects of sleep on epilepsy Seizures does not only affect sleep but sleep also has an effect on seizures. Sleep specifically deep stages of sleep (called non- Rapid Eye Movement (non-REM) sleep) increases the brain seizure activity at night while deeper sleep stages called REM sleep suppresses seizures. When seizures occur 2 times or more to a person and are more than 24 hours apart this is termed medically as epilepsy \[1\] and when they have peculiar accompanying features, like for example occurring at certain age or have certain patterns, they are categorized under different types that are referred to as epilepsy syndrome \[2\]. Certain epilepsy syndromes will occur mainly during sleep like Sleep Hypermotor Epilepsy (SHE), for example, is a rare form of epilepsy where seizures occur mainly during sleep and are associated with mixed physical body movements like kicking or cycling of limbs and /or rocking body movements. Similarly, benign epilepsy with centrotemporal spikes (BECTS) and childhood epilepsy with occipital paroxysms (CEOP) are types of epilepsy that occur mainly in children where seizures will occur primarily or mostly during sleep. Patients with sleep apnea — a sleep disorder in which breathing will repeatedly stops and starts abnormally while we are asleep — will also aggravate seizures. Not getting sufficient sleep for age, typically 7-9 hours in adults is recommended by the American Academy of Sleep Medicine (AASM) \[3\], can also predispose to seizures. **RELATED: [LEILA’S STORY: An Excuse to Sleep](https://livingwellwithepilepsy.com/2016/leilas-ideas/leilas-ideas-excuse-sleep.html)** #### Conclusion In conclusion, sleep and epilepsy share a two-way relationship with aspects of each affecting the other and they both can affect each other through a number of complicated routes. Although, it is clear that an interaction between sleep and epilepsy exist, there are still unanswered questions regarding their association. It is important for doctors and patients to be aware of this symbiotic relation between sleep and epilepsy. In addition to using anti-seizure medications, treating underlying sleep disorders like sleep apnea and getting adequate amounts of sleep at night can help to decrease the seizure frequency. #### SOURCES: *[The International League Against Epilepsy](https://www.ilae.org/) (ILAE) \[1\] /\[2\]* *[The American Academy of Sleep Medicine ](https://aasm.org/)\[3\]* *Epilepsy Foundation* *National Sleep Foundation* *The University of Pennsylvania Mayo Clinic* ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, Epilepsy Stories, Nov 20 EBR Posts --- ### [Does healthy lifestyle and wellness have an impact on epilepsy?](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-and-wellness.html) **Published:** November 2, 2020 **Author:** Guest Contributor **Excerpt:** Vinay shared that his epilepsy diagnosis was driving him into depression. But when his lifestyle and wellness improved thanks to indoor cycling and endurance sports he found it improved his body and mind. **Content:** #### Vinay’s Story Hello my name is Vinay Jani and I’m from New Delhi, India. I was diagnosed with complex partial epilepsy in July’2005 due to a non-cancerous cyst in left temporal region of my brain and I was 21 years old at that time. I used to live a very active life those days as in 2003 only I reduced 65kgs of weight (143 lbs) but due to epilepsy I stopped following my daily routine. Yes, I’d say that the challenge life has given me was not acceptable to me at that time and I was pushing myself into depression by over thinking about it. #### Early struggles with medication Initially the course of treatment was started with homeopathy treatment but it didn’t work for me so I switched to ayurvedic medicines. In December’2008 I had a generalized seizure due to which I was hospitalized and after that I changed my course of medications. From July’2005 to December’2008 I regained 40kgs weight and was weighing around 112kgs. While prescribing medicines my doctor said “I’m prescribing medicines which are prescribed to a person below 100kgs of weight now you have to take a call whether loose your or you want to increase your medicine dosage” and that would I say a turnaround point for me. Slowly and gradually my seizures were controlled through medication and I again resumed daily routine which I use to follow. After living seizure free life for four years through medication my doctor decided to withdraw my medication slowly and gradually. It took almost a year in the weaning off process of the medicines and after one year I got a trigger and I again consulted my doctor he immediately resumed my medicines. But, this time I didn’t want to over-think my wellness again. #### Indoor cycling was a gateway to wellness In 2015, I got connected indoor cycling instructor and he introduced me to outdoor cycling. I told him about my medical condition then I never look back. He was also running a cycling club where mostly riders use to do endurance cycling commonly known as [BRM or Brevet](https://rusa.org/) but all my co-riders are aware medical problem so they never use to leave me alone during the event. I did my first BRM of 200km in May’2016 and did two Super Randonneur title in Audax Calendar Year 2016-17 and after that I started doing Brevet in every season. **RELATED: [Jenny LaBaw, Fitness and Wellness Coach on Endurance Sports and Epilepsy](https://livingwellwithepilepsy.com/2016/epilepsy-blog-relay/epilepsy-blog-relay-jenny-labaw-on-epilepsy-and-fitness.html)** #### Ultra-Cycling and marathons are not off limits I also did an Ultra BRM of 1000kms in Audax Calendar Year 2017-18 through which I did pre-registration of 19th Edition of Paris-Brest-Paris in January’2019 and did my Super Randonneur to meet up the eligibility criteria and after that I started training myself for event. Though I had to abandon the event in between due to some technical issues. It is wisely said that sometimes learning comes with the mistakes and failures but its our thought whether we are looking on lesson learned from our mistakes and failures or thinking just about the failure. Paris Brest Paris was a completely learning experience for me as a randonneur and I’m looking forward to re-attempt the 20th Edition. After coming back to India, I started endurance running too and did my half marathon in Oct’2019 and after that I started preparing for a marathon which was scheduled in Feb’2020 and completed that and earned a Marathoner title. #### Wellness of body and mind In my story I reflected my two sides. One who is down in depression, over-thinking about his medical challenge and the one who is happy, become more determined towards its goals. With time I’ve realized that wellness of mind and body is always required. Mentally well people are positive, self-assured, determined and happy and can control their thoughts, emotions and behaviour. This enables a person to handle challenges and also helps in creating strong relationships. To achieve this we all need a happy and peaceful mind. I firmly believe that we should do things which makes us happy. In 2016 I had to change to my doctor due to some reasons and he used to advise blood check-ups time to time from him only I got to know that anti-epileptic drugs take a toll on the immunity of the body. A habit of eating healthy got changed to a healthy lifestyle which also complimented me in mental wellness. So, by keeping wellness of mind and body I hope there is a chance I can have fewer seizures. *Note: This is one person’s experience not medical advice* ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, Epilepsy Stories, Nov 20 EBR Posts **Tags:** endurance sports --- ### [Much needed rest for epilepsy caregivers](https://livingwellwithepilepsy.com/epilepsy-stories/rest-for-caregivers.html) **Published:** November 1, 2020 **Author:** Guest Contributor **Excerpt:** Rachel, a caregiver to 4 children including one son living with Lennox Gastaut Syndrome (LGS), got a much needed break through A Mother's Rest. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/10/img_4322-e1604158227488-992x1024.jpg "Rachel Ablondi – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/img_4322)Rachel’s Story I just returned from spending two nights and three days with six women I had never met at a home that is located only a few miles from my own house. And I loved it! I absolutely cannot wait to do it again. Why was this time spent with strangers so close to my own home, away from my four kids and husband so special? Let me fill you in. #### Much needed rest A respite inn designed for giving caregivers a much needed rest opened about two years ago in my hometown. It is located so close to my house it seemed silly to even consider staying there. How could a stay in a home so close to my own provide me any kind of rest? I finally decided though after hearing from so many others on a social media group as to how restful it was to stay that I would go ahead and make a reservation. I booked a room for a stay which was eight months away. If I needed to cancel, I had a few excuses ready and waiting if needed. My son was sick, my mom needed my help, etc. If needed, I could back out. The weekend approached, I received an email reminder from the owner about my stay and she asked for confirmation that I would be coming. Did I really want to go? I knew I needed a break, but did I REALLY need a break? I had just come back from a family vacation. I was good. I rarely get away from my four kids. I can count on one hand the number of times I have actually done that in 21 years as a mom. I was just about to cancel, when my husband pushed me and said, “just go”. So, I did. #### Rachel’s experience with A Mother’s Rest I arrived at 5pm on a Friday evening at The Terrace Guest House in New Market, Maryland. From the street you will see the house is a beautiful, all brick, historic tavern home nestled among other historical homes in a very quaint and charming town, but the home is located on Main Street which is quite busy. I have to admit I’m a little skeptical. How am I gonna rest here? I enter through the front door and immediately a warmth takes over. Oddly, the sounds of the passing traffic are non-existent. The steps I am taking on the rustic hardwood floors are the sounds I am noticing now. It’s clear this house has some history to it. It’s beautiful inside. The stairwell is right in front of me, but I am drawn straight ahead to the kitchen. It is full of the modern amenities that are necessary in any state of the art kitchen today, but the wood beams add a homey, old timey warmth. On the butcher block countertop is a sign that welcomes me and the other six house guests. A quick turn to the left is a sun porch that overlooks an immaculate backyard garden area. The area is bustling with colorful birds, energetic squirrels, cute chipmunks and rabbits. (I didn’t realize it then, but I would soon be enamoured in every move all these creatures would make throughout the day.) I find myself admiring things like the wallpaper, and touching the lush blankets draped over chairs instead of what I am usually looking for which is a way to get my son’s wheelchair in and around the house, or picking out the best spot to change him. I am drawn to continue exploring this warm, inviting space. At each turn, every decoration, detail and furnishing is perfectly in place. There’s a lot to explore here. Thankfully, I have all weekend to do so. #### A little background on LGS In the living room of the house, I was welcomed by four of the guests. We shared a little about ourselves, and a little about our sons and daughters who share the same diagnosis. Our kids all live with the diagnosis of [Lennox-Gastaut Syndrome (LGS)](https://livingwellwithepilepsy.com/2015/epilepsy-blog-relay/epilepsy-blog-relay-diagnosis-of-lgs.html). LGS is a rare form of epilepsy. Those who suffer from it deal with daily seizures, take many medications that do not offer much help, often have intellectual delays and/or behaviour issues, and a host of other issues. We live in different states, have different aged kids, but our stories were all very similar. Most of our days are taken up with scary seizures, medication dosing, doctor appointments, diaper changing, therapy appointments. I had never met these ladies, but very quickly realized we were living very similar lives, full time caregiving and very little rest. They were just as educated as me on [CBD Oils](https://livingwellwithepilepsy.com/2018/aboutepilepsy/treatments/considering-cbd-for-epilepsy.html), epilepsy medications, excellent doctors and hospitals, ER visits, behaviors, seizure safety. It was refreshing to be around others who get all that comes with the LGS diagnosis. **RELATED:** [**Caregiver Fatigue**](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/caregiver-fatigue.html) #### The arrangements My four kids, including my 21 year old son who is diagnosed with LGS were at home with my husband. He would pull double duty this weekend, taking time off work, and taking care of all the activity at my home. One mom had arranged with several different caregivers in several different homes to stay with her son so she could be there, another had relied on close family members. We had all made arrangements long ago, some easier then others just so we could benefit the most from this much needed time away. Very quickly, we learned that we all were coming from pretty much the same place. We understood each other. We know how common it is for others to take an uninterrupted night of sleep, time alone, time to just read a book, or to eat a meal, or to shop without anyone else for granted. These weren’t things we were used to. We were all here to simply get some sleep, have some quiet time, and to just get a break from the caregiving we do every second of our days. We wanted to sleep without our child screaming for us, or without a seizure waking us up. We wanted to read a book in one sitting. We wanted to eat at the seafood place we usually cannot eat at because our child won’t sit at a restaurant quietly for that long of a time. It was immediately clear we were all grateful to be away here in this cozy space with other mothers who can relate. #### True relaxation Our first (and only) important decision of the night, was where would we have dinner? And guess what? We really did eat dinner at a restaurant we chose, at a time we chose, and we simply enjoyed the taste of the food, all while enjoying each other’s company. During dinner our conversations turned to favorite movies or tv shows, favorite mixed beverages, what we would be doing in our own free time this weekend. The worries of seizures, [administering medications](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/live-with-craig-chambliss-discussing-the-importance-of-rescue-medications.html), caregiving had thankfully taken a back seat. That was so refreshing. We arrived back at the Inn on that first evening and enjoyed a little more conversation, and then we all went our separate ways. I was delighted to make my way to my comfortable room. I couldn’t wait to climb into the bed which was so plush and inviting. Gosh. I was truly alone. I am rarely alone. I chose to read. I could hear in the distance the racing of the cars on the nearby interstate. In another time, I may have been bothered by that noise, but here and now it was one last reminder for me for the evening that it was okay for me to take time for myself even though all the craziness of the world is still swirling around me. I am quickly, and happily coming to the reality that I have two more days here all to myself. I didn’t realize how much I had really needed this time. Now it’s your turn! For more information on LGS, please visit ​[www.lgsfoundation.org](https://www.lgsfoundation.org/) For more information on respite, please visit ​[www.amothersrest.org](https://www.amothersrest.org/) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, Epilepsy Stories, Nov 20 EBR Posts **Tags:** Caregivers, Lennox-Gastaut Syndrome, LGS --- ### [My COVID-19 Victory Garden has become my best stress relief](https://livingwellwithepilepsy.com/epilepsy-stories/victory-garden-stress-relief.html) **Published:** September 21, 2020 **Author:** Jessica K. Smith **Content:** Some of you may be aware that I’ve become a little obsessed with gardening this year. So I figured since I just had my birthday I should celebrate by writing about whatever I want… Okay well, maybe at 48 I should get over myself. But I do want to share a little about my garden adventures. #### The birthday bit Before I move on, yes I did have a birthday recently. Yes, my hair is actually going gray. And yes, I am actually 48. Earlier this year I was not doing well, physically or emotionally. But now on this side of the year, and the birthday, I can confidently say I am looking forward to the second half of my life. I am ready start the next phase with renewed energy. #### The pandemic When news of the [COVID-19](https://www.worldometers.info/coronavirus/#countries) pandemic hit, I had just completed a scientific conference (without incident thankfully), and immediately cancelled our family’s large St. Patrick’s Day party. This meant I needed to tell upwards of 100 or so friends and family that we would not be having corned beef and cabbage, shepphard’s pie and homemade brown soda bread in my tiny house all jammed in together. It just seemed like a disaster waiting to happen at the time (and now for that matter). I am so glad we decided to cancel. Though I do hope we are able to revive the tradition at some point. #### Food supply chain Then, with too much time at home, I began to stress out about the food supply chain. At that point I wasn’t even freaking out about transmission at supermarkets. So, I asked my husband how he would feel about us adding a raised bed in the back yard. I was really just thinking about one raised bed and a few plants. I had no idea I would go down the rabbit hole of homesteading. #### Gardening as stress relief When my husband agreed to build me three (not one) raised beds, lay mulch and start composting, I was off to the races. I just needed a little encouragement to start this new adventure. I began binging videos from YouTubers like [MIGardener,](https://www.youtube.com/user/MIgardener) [Garden Answer](https://www.youtube.com/c/gardenanswer/), [Roots and Refuge](https://www.youtube.com/c/RootsandRefugeFarm) and [The Elliot Homestead](https://www.youtube.com/c/Theelliotthomestead). I began obsessing about how to develop a potager garden, and I learned how to pickle my own veggies. [ ![](https://www.awltovhc.com/image-7612796-13245968)](https://www.kqzyfj.com/click-7612796-13245968) #### Planning for the next seasons/wave of the virus As much of a newbie as I am, I have learned a fair amount in my first year of gardening. Here are a few things I picked up along the way: **1 Know your zone** If you are a total newbie Iike I was, then you will need to know your growing zone. A good place to start is the [USDA Plant Hardiness Zones](https://planthardiness.ars.usda.gov/PHZMWeb/). But that will only get you so far. If you want to know what plants to start when check out the [Urban Farmer’s Planting Schedules](https://www.ufseeds.com/learning/planting-schedules). **2 Start small** Don’t try to fill your entire yard with soil or mulch. It will cost a fortune and you will be burned out in the process. Start with plants that have a short maturity timeline like Radishes or Lettuce. These can be grown even indoors because they don’t take up too much room! **3 Don’t be afraid to fail** Sorry: I’m here to tell you that some seeds won’t germinate. Sometimes the weather won’t cooperate. And sometimes an experiment won’t work. But I have found that the experimenting is part of the fun. **4 Winter shouldn’t stop you** Many of you know I live in the northeast. Some of you also know I have been away from home for the month of September. So I won’t be able to put my Fall/Winter plants in until I get home in October. I can’t be sure everything will survive because some things are going in a bit late. But that’s okay. Here’s a quick look at a few things I plan to put in when I get back home.[![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/09/Screen-Shot-2020-09-21-at-10.49.10-AM.png "Screen Shot 2020-09-21 at 10.49.10 AM – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/victory-garden-stress-relief.html/attachment/screen-shot-2020-09-21-at-10-49-10-am) **5 Plan your garden** This is one I didn’t do before. But I am happy I have put the work in to plan it now. I have created a spreadsheet identifying the season the item will go in the ground, the plant, the season to harvest, and whether or not I need the seeds. I have also saved a ton of seeds from this spring and summer. I’m looking forward to getting into seed swaps next year. Yup I’m that level of geek. #### A little inspiration Hopefully this has given you a little inspiration to think about a COVID-19 project that [might ease your own stress](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/6-tips-for-combating-stress-while-living-with-epilepsy.html). Thanks for letting me go off on this tangent. I hope you will share some of your own passion projects here. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. 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](https://linkedin.com/in/) **Categories:** Epilepsy Stories **Tags:** covid-19, gardening, stress relief --- ### [Epilepsy Heroes: Cole and Katie](https://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-heroes.html) **Published:** September 15, 2020 **Author:** Jessica K. Smith **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/09/image1-2-e1600189347323-300x300.jpeg "image1-2 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2020/epilepsy-blog-relay/epilepsy-heroes.html/attachment/image1-2-2)*This blog post was submitted by Sunovion Pharmaceuticals Inc.* \#MyEpilepsyHero is proud to feature Cole and Katie, two amazing kids who started their own initiatives to help fellow kids with epilepsy. *This #MyEpilepsyHero post is published with the permission of Cole and Katie.* #### Cole: During a prolonged stay at a children’s hospital for his epilepsy, 12-year-old Cole was introduced to the idea of patients picking out socks as a keepsake. At a more recent visit, he was disappointed to learn that the hospital no longer offered this fun tradition. Knowing firsthand how picking out socks had been a highlight during his previous stays, he decided to do something. Soon, the [“Cole’s Socks for Smiles”](https://www.facebook.com/colessocksforsmiles/) drive was put in motion. He set up a box at his town’s community center where people donated a variety of fun socks for children at his hospital. Cole’s act has inspired an enormous number of donations from the community. His initial goal was to collect 500 pairs of socks. He has exceeded his goal by collecting 42,000 pairs and counting! With the massive pile of socks growing every day, Cole and his mother, Erica, plan to extend their list of donation recipients to the other local children’s hospitals. He is looking to reach 100,000 pairs of socks by the end of the year. Going above and beyond to bring joy to other people with epilepsy is why we are proud to name Cole as one of our Epilepsy Heroes! #### Katie: In addition to playing hockey, soccer, softball, and basketball, nine-year-old Katie spent the past summer attending one of [Epilepsy Foundation New England](https://epilepsynewengland.org/)’s Purple Camps. These camps offer children with epilepsy and their families a wide range of exciting and engaging activities that they may not be able to take part in at a more traditional summer camp. Katie, diagnosed at the age of seven, had such an amazing experience meeting other kids with epilepsy and taking the time interacting in a fun tradition that previously seemed out of reach. Unfortunately, the cost to maintain the camp programs can be quite expensive. Katie wanted to help raise funds to support the camp programs and raise epilepsy awareness; she hosted a clothing and ketogenic food drive. Ketogenic food, which she learned about from a friend at camp, is a special diet that may help control seizures in some people with epilepsy. Katie is aware that ketogenic food can be costly at times and wants to bring attention to this issue as a part of her awareness campaign. As she continues to raise awareness about epilepsy and the dietary needs of certain people with epilepsy, her efforts have provided more than 224 campers the opportunity to enjoy everything that these camps have to offer. With Katie’s contributions to the epilepsy community, it’s easy to see how she won Miss Massachusetts Pre-Teen for the [USA Ambassador Pageant](https://usaambassador.com/). She is one of our Epilepsy Heroes, indeed! [Participate in the upcoming November 2020 Epilepsy Blog Relay ](https://livingwellwithepilepsy.com/2020/epilepsy-blog-relay/join-nov-2020-epilepsy-blog-relay.html) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Blog Relay --- ### [Participate in the November 2020 Epilepsy Blog Relay](https://livingwellwithepilepsy.com/epilepsy-blog-relay/join-nov-2020-epilepsy-blog-relay.html) **Published:** September 12, 2020 **Author:** Jessica K. Smith **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/09/Nov2020-EBR-IG-300x300.png "Nov2020 EBR IG – Living Well With Epilepsy")](https://bit.ly/nov20ebrform)Living Well With Epilepsy is gearing up for our next Epilepsy Blog Relay™ which will run throughout November 2020. #### HOW IT WORKS There are a few ways to participate: [1) BLOGGER:](https://bit.ly/nov20ebrform) If you have your own blog – Participate as a blogger by posting the full story on your site and on Living Well With Epilepsy. FREE [2) CONTRIBUTOR:](https://bit.ly/nov20ebrform) If you don’t have your own blog – Participate as a blogger by submitting your story and share it on your favorite social media platform. FREE [3) MEDIA PARTNER:](https://bit.ly/nov20ebrform) If you are an **epilepsy nonprofit** – Participate as a media partner by submitting a community member story, and sharing stories in your newsletter and on your favorite social media platforms. FREE [4) MEDIA PARTNER:](https://bit.ly/nov20ebrform) If you are an **academic medical center** – Participate as a media partner by submitting a community member story, and sharing stories in your newsletter and on your favorite social media platforms. FREE [5) SPONSOR:](https://bit.ly/nov20ebrform) If you are a company or agency – Chat with us about how the relay can best accomplish your goals. We are open to branded and unbranded content, banner ads, and more. [REQUEST MEDIA KIT FOR FEES](https://livingwellwithepilepsy.com/wp-content/uploads/2020/09/2020-21-Media-Kit.pdf) THE THEME The theme for the month is: **“EPILEPSY AWARENESS: Stronger Together”** We are hoping to showcase as many voices of color as possible in the November Epilepsy Blog Relay! [Join the Epilepsy Blog Relay ](https://bit.ly/nov20ebrform) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Blog Relay **Tags:** Epilepsy Blog Relay --- ### [Epilepsy Blog Relay: A Pituitary tumor and seizures leads to a life in search of answers](https://livingwellwithepilepsy.com/aboutepilepsy/pituitary-tumor-and-seizures-leads-to-a-life-in-search-of-answers.html) **Published:** November 4, 2019 **Author:** Guest Contributor **Excerpt:** The doctor asked if I knew I had a pretty good size tumor or Adenoma, on my Pituitary Gland after I woke from seizures that progressed into a diabetic coma. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/11/PALMSylvia-240x300.jpg "PALMSylvia – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2019/aboutepilepsy/pituitary-tumor-and-seizures-leads-to-a-life-in-search-of-answers.html/attachment/palmsylvia)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** #### Sylvia’s Story In March 2013, I was working full-time as an Industrial Engineer, taking care of my mother, who lived with me and had Congestive Heart Failure from chemotherapy and Dementia. It was around 7PM and I was completing the last chapter of my doctoral dissertation. I went from my home office to the kitchen for a bottle of water. That was the last thing I remember from that evening. I woke up 3 days later, in the hospital, with medical professionals and loved ones surrounding me. I had no comprehension of what happened, or why I was in the hospital. I was told that I was transported to the hospital having seizures. A few hours later I went into a diabetic coma with a glucose level of 927 (a normal level is around 100). Now remember, I was taking care of my mother with dementia. She was wearing an alert button on her wrist and when she discovered me on the kitchen floor, she pressed her button. When the EMTs arrived, mom would not open the door because she didn’t realize she had pressed her emergency button. The EMTs called the county police and when they came, she opened the door. When asked who I was, my mother could not remember my name and as a result, I was taken to the ER as a “Jane Doe”. **Related: [Epilepsy Blog Relay™: Using Tech to Improve life with Epilepsy](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/epilepsy-blog-relay-using-tech-improve-life-epilepsy.html)** The medical professionals at the hospital were confused with the high blood glucose levels. The EMTs didn’t find any diabetic IDs in the house or on my person. Once I came out of the diabetic coma, I was asked why I did not take my insulin or check my blood glucose levels. I told the doctors and nurses that I was not diabetic and that I did not know how to check my glucose levels. During this time, the MRIs, CT Scans, X-rays results were back and being analyzed. On the fifth day of my hospitalization, an Endocrinologist entered my hospital room and asked me if I knew that I had a pretty good size tumor (Adenoma) on my Pituitary Gland? I answered no and asked him, where is the Pituitary Gland. The doctor told me that this was a small gland in the center of the head that controls a lot of very important functions. Well, all of this information was a surprise to me and began my epilepsy journey. After further consultations and examinations, it was determined that the tumor on my pituitary gland had completely stopped my pancreas from working and subsequently there was not insulin being produced. The seizures experienced at home and in the ambulance, were caused by the high blood glucose levels. I transferred my care to a well-known Pituitary Clinic for further evaluation. I was under the care of a different Endocrinology Specialist. The clinic’s plan was to observe the tumor for a few years to analyze how fast it was growing. The years 2014 – 2016 passed. There were countless MRIs, with and without contrast. Each taking longer than the previous test. In 2017, I was advised that the pituitary tumor was growing and nearing the ocular nerve that controls eye site. In December 2017, I chose to have the tumor removed. The pituitary gland is located at the bottom of your brain and above the inside of your nose. The surgery was 11 hours. I was scared to death, but was very confident in all of my surgeons. Today, I still have seizures and they are being caused by something else; the physicians have not found a cause. They are controlled by medication. I wear an Epilepsy device on my arm that makes life a little easier. Because I live alone, I am constantly looking for helpful things to make life safer. I read everything I can about Epilepsy so I have up-to-date information. There is a 3 percent chance of a re-occurrence of the tumor. I am no longer walking around in the fog, but a light mist still exists. My mother is no longer here, but she gave me life more than once while she was! *[![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/11/Danny-Did-Logo-Traditional--300x120.jpg "Danny Did Logo Traditional – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2019/aboutepilepsy/pituitary-tumor-and-seizures-leads-to-a-life-in-search-of-answers.html/attachment/danny-did-logo-traditional)Sylvia Palm serves as the Maryland Ambassador for the Danny Did Foundation, a nonprofit focused on issues of safety, technology, SUDEP and other forms of mortality in epilepsy. Learn more at* [*www.dannydid.org*](http://www.dannydid.org)*.* --- **NEXT UP:** Be sure to check out the next post tomorrow at . ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** About Epilepsy, Brain Tumor and Epilepsy, Nov 19 EBR Posts, SUDEP **Tags:** pituitary --- ### [Epilepsy Blog Relay: Epilepsy Awareness Day at Disney Land](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-awareness-day-at-disneyland.html) **Published:** June 5, 2019 **Author:** Candy Levy Sofie's Journey/Epilepsy Awareness & Education Expo **Excerpt:** Learn more about Epilepsy Awareness Day at Disneyland, an outstanding event that is the one stop shop for all things Epilepsy! **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/05/SofiesJourneyEADDL2019JPEG.jpeg "SofiesJourneyEADDL2019JPEG – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/sofiesjourneyeaddl2019jpeg)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. We are honored to have the Epilepsy Awareness Day at Disneyland as a [Media Partner](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2019-sponsors-and-partners) in the June Epilepsy Blog Relay.*** #### The Event In an effort to address the unmet needs for increased education for people with epilepsy and their families, Sofie’s Journey has created the [Epilepsy Awareness & Education Expo and Epilepsy Awareness Day at Disneyland](https://epilepsyawarenessday.org/). In 2018 the Sofie’s Journey team welcomed 3400 participants and 120 exhibitors to this outstanding event. The goal is to help educate as many people as possible. The team works with the finest professionals, from Epileptologists, to non-profits and everything in between. You will find that Epilepsy Awareness Day at Disneyland is the one stop shop for all things Epilepsy! #### Check out the event [Register for the Event ](https://epilepsyawarenessday.org/#register) Get the latest updates at: --- NEXT UP: Be sure to check out the next post by Alison at [shedlightonepilepsy.org](http://www.shedlightonepilepsy.org/) for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) posts you may have missed. ![author avatar](https://secure.gravatar.com/avatar/e1290772fc381ae86ac4d8b2283c0f2ea15ae1b3dcd11839409749a56ddbe4fc?s=300&d=mm&r=g) Candy Levy Sofie's Journey/Epilepsy Awareness & Education Expo [See Full Bio](https://livingwellwithepilepsy.com/author/eaddl) [ ](https://livingwellwithepilepsy.com/author/eaddl) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPGcgY2xpcC1wYXRoPSJ1cmwoI2NsaXAwXzM0M18xMDE2KSI+CjxwYXRoIGQ9Ik03Ljk5OTk5IDBDMTIuNDE4MyAwIDE2IDMuNTgxNzMgMTYgNy45OTk5OUMxNiAxMi4wOTAyIDEyLjkzMDMgMTUuNDYzIDguOTY5MjEgMTUuOTQxNFYxMC40NDQ3TDExLjEzMzQgMTAuNDQ0N0wxMS41ODIzIDhIOC45NjkyMVY3LjEzNTM5QzguOTY5MjEgNi40ODk0NSA5LjA5NTkxIDYuMDQyMjYgOS4zODY1NyA1Ljc1NjU2QzkuNjc3MjYgNS40NzA4NCAxMC4xMzE5IDUuMzQ2NjIgMTAuNzg3OCA1LjM0NjYyQzEwLjk1MzggNS4zNDY2MiAxMS4xMDY2IDUuMzQ4MjcgMTEuMjQyMiA1LjM1MTU3QzExLjQzOTQgNS4zNTYzOCAxMS42MDAxIDUuMzY0NjcgMTEuNzEyIDUuMzc2NDRWMy4xNjAzMkMxMS42NjczIDMuMTQ3ODkgMTEuNjE0NSAzLjEzNTQ3IDExLjU1NTQgMy4xMjMyNEMxMS40MjE0IDMuMDk1NTQgMTEuMjU0OCAzLjA2ODgzIDExLjA3NTcgMy4wNDUzN0MxMC43MDE2IDIuOTk2MzYgMTAuMjcyOSAyLjk2MTU0IDkuOTcyOTIgMi45NjE1NEM4Ljc2MTYgMi45NjE1NCA3Ljg0NjE0IDMuMjIwNjggNy4yMDcxMyAzLjc1NzQ2QzYuNDM1OTIgNC40MDUyNyA2LjA2NzM5IDUuNDU3NDggNi4wNjczOSA2Ljk0NjU5VjcuOTk5OTlINC40MTc3MlYxMC40NDQ3SDYuMDY3MzlWMTUuNzY0NEMyLjU4Mjg4IDE0Ljg5OTkgMCAxMS43NTE4IDAgNy45OTk5OUMwIDMuNTgxNzMgMy41ODE3MyAwIDcuOTk5OTkgMFoiIGZpbGw9IiM0MzQ5NjAiLz4KPC9nPgo8ZGVmcz4KPGNsaXBQYXRoIGlkPSJjbGlwMF8zNDNfMTAxNiI+CjxyZWN0IHdpZHRoPSIxNiIgaGVpZ2h0PSIxNiIgZmlsbD0id2hpdGUiLz4KPC9jbGlwUGF0aD4KPC9kZWZzPgo8L3N2Zz4K) ](https://www.facebook.com/epilepsyawarenessday/) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://twitter.com/EpilepsyADDL) **Categories:** Epilepsy Stories, Jun 19 EBR Posts --- ### [Epilepsy Blog Relay™: Do you KNOW Epilepsy? Say NO to stigma](https://livingwellwithepilepsy.com/epilepsy-blog-relay/jun-16-ebr-posts/say-no-to-stigma.html) **Published:** June 2, 2016 **Author:** Emily Lawrence (Nee Donoghue) **Excerpt:** Stigma can make you feel ashamed, embarrassed and it can make you lose your confidence. Try to remember that you are not your condition. **Content:** [![Award](http://livingwellwithepilepsy.com/wp-content/uploads/2016/05/Award-300x300.jpg "Award – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2016/s/say-no-to-stigma.html/attachment/award-2)*This post is part of the [Epilepsy Blog Relay™](http://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-jun-2016-participants) that will run from June 1 through June 30. Follow along and add comments to posts that inspire you!* #### Overcoming the stigma Stigma is negatively judging someone based on a particular attribute, such as having a health condition (Mental or physical). It is known that people view the various stereotypes about certain illnesses and let those determine their beliefs. Stigma has a tremendously harsh and hurtful impact on people with these conditions. Epilepsy is a condition which has a [long history](http://onlinelibrary.wiley.com/doi/10.1046/j.1528-1157.44.s.6.2.x/pdf) of negative stereotypes and stigma. Stigma with epilepsy can be subtle, but some people aren’t so quiet about it. Growing up I had people make negative comments about my seizures and the way they made me look. As soon as people heard I had epilepsy they would panic, and visualize me on the floor convulsing and frothing at the mouth. Stigma can make you feel ashamed, embarrassed and it can make you lose your confidence. For some time I didn’t dare leave my house because I was so frightened of being laughed at or judged. That changed one day when I was out with my pen and paper writing up a story on the bus to college, a girl came and sat next to me. She asked me what I was writing and I told her that writing was (it still is) my escape. “Don’t you ever let a soul in the world tell you that you can’t be exactly who you are”. I’ll never forget what she said. Her words have stuck with me ever since. #### Some effects of stigma can include: - Reluctance to seek help or [treatment](http://livingwellwithepilepsy.com/treatment-options) - Lack of understanding by family, friends, co-workers or others you know - Fewer opportunities for [work](http://livingwellwithepilepsy.com/2015/leilas-ideas/leilas-ideas-stigma-in-the-workplace.html), school or social activities or trouble finding housing - [Bullying](http://livingwellwithepilepsy.com/2014/emilys-perspective/emilys-perspective-severe-seizures.html), physical violence or harassment - The belief that you’ll never be able to succeed at [certain challenges](http://livingwellwithepilepsy.com/2015/blog-relay/traveling-with-epilepsy-they-say-you-cant-skydive.html) or that you can’t improve your situation #### You’re facing stigma: How to cope? I’m not going to sit back and pretend that I coped with the stigma behind epilepsy and mental health like a trooper and that it didn’t bother me one bit. That’d be a huge lie. From around the age of 14-16 I did struggle, but that’s when I realised that I could be the change I wanted to see in this world. I decided I wanted to get out there and teach people as much as I could about my condition, and that is what got me where I am today, and I want to help you too. #### A few tips: - My first tip is to get educated. Make sure you know your stuff before you go and talk to people, then, once you feel confident- share what you’ve learned with your family and friends. Knowledge is one of the best and strongest ways to fight the stigma. - Another good tip is to **accept help** (and seek it!!). One in every three people with epilepsy will experience some form of depression during their lifetime-keep in mind that emotional health conditions are treatable, so there’s no need to struggle in silence. Once you are managing your emotions you will feel much stronger emotionally to tackle your other challenges. - Remember that you are not your condition. You may have Epilepsy, but it doesn’t have you! I try to avoid using terms like Epileptic, because that allows you to keep a little control! - My biggest, most passionate tip I can give you is to get involved. This is what made me who I am today. I reached out and found ways to put my ideas, my passions, my experience and myself into work and campaigns to help other people. Find out what groups are around you or organisations you’d like to be involved with that don’t necessarily need to be around the corner. Getting involved in a group can help change the way people view you and your work can help your colleagues and school friends to be more understanding and supportive of you and other individuals with health conditions. #### Say no to stigma I want people to know more about epilepsy, so we can say a big NO to stigma because stigma doesn’t just come from others. You may mistakenly believe negative things that you tell yourself over time. I believe that by seeking support, educating yourself about your condition and connecting with others with similar experiences can help you gain self-esteem and overcome some huge obstacles we are faced with epilepsy. So that is step one of knowing epilepsy. I know that you may sometimes be reluctant to tell anyone about your condition, but your family, friends, colleagues or members of your community can be so helpful and they will feel so much more comfortable knowing about your condition than if you were to have a seizure in front of them and they had no idea. People can offer you support if they know about your epilepsy. Reach out to people and help make a change. Know Epilepsy! And like I said before, don’t make yourself your condition or illness. You are not an illness or a condition- you are YOU and you’re very special. No stigma allowed here. “You may not control all the events that happen to you, but you can decide not to be reduced by them.” ― Maya Angelou --- NEXT UP: Be sure to check out the next post tomorrow on [https://busfair.blogspot.co.uk/p/home\_24.html](https://busfair.blogspot.co.uk/p/home_24.html) for more on Epilepsy Awareness. For the full schedule of bloggers visit [livingwellwithepilepsy.com](http://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-jun-2016-participants). And don’t miss your chance to connect with bloggers on the #LivingWellChat on June 30 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/5523d28ae8bbaedc9d082d51d29393ca490379cd31464b99ab3c7d50a49362ac?s=300&d=mm&r=g) Emily Lawrence (Nee Donoghue) 25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England. Emily's Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10. Based in UK. [See Full Bio](https://livingwellwithepilepsy.com/author/emilyd) [ ](https://livingwellwithepilepsy.com/author/emilyd) **Categories:** About Epilepsy, Jun 16 EBR Posts, Stigma **Tags:** Epilepsy Blog Relay, Jun 16 EBR Posts, self-esteem, Stigma --- ### [Epilepsy Blog Relay: A system of support](https://livingwellwithepilepsy.com/epilepsy-stories/system-of-support.html) **Published:** March 4, 2019 **Author:** Soo Ihm **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/03/soo-img_4531-e1551409315655-279x300.jpg "soo img_4531 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/system-of-support.html/attachment/soo-img_4531)This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) ***which will run from March 1 through March 31. Follow along!*** Soo Ihm has lived with epilepsy since childhood. Now in southern California, she writes the blog Soo’s Epilepsy Corner and is an advocate for epilepsy awareness. She enjoys playing the piano, going to art museums, and learning foreign languages, among other things. #### About My Blog: Soo’s Epilepsy Corner is a place to discuss issues related to epilepsy. I want to share my experiences living with epilepsy as well as provide access to reliable resources for people with epilepsy and their families and caregivers. #### A System of Support I feel very lucky to be where I am in life today. Epilepsy is a hindrance that I have to deal with every day. The seizures persist despite the various treatments I have tried. However, I have a family, a doctor, and epilepsy support/advocacy group I can depend on. This is a great comfort, and I know that no matter what happens, they will always be there to help. A stable system of support is vital for people with epilepsy. Without it, life would be much more difficult and perhaps people with epilepsy would still be locked up in institutions or worse yet, killed for having a condition they cannot control. It is thanks to the activists—families, doctors, research organizations, and advocacy/support groups—that people with epilepsy have come out from the shadows and are integrating into society. I myself have always been fortunate to have this kind of support. Even though my seizures are not under control, my doctors tried and are continuing to try anything and everything they can to reach the goal of seizure freedom. Also, I have been lucky to have access to support groups for people with epilepsy. These organizations help educate as well as provide an outlet to connect with others in similar situations. Finally, my family has been my pillar of strength, comforting me when times were difficult. #### Doctors I believe in general that all doctors always want the best for their patients. That is the case with me. I’ve been on more medications than I can count, trying many different cocktails that always left me with severe side effects. At one time, I was taking five medications. Now I’m on four (not much of an improvement, but at least the side effects aren’t bad). I am a tough case to crack, and it is thanks to my epileptologist who thinks outside the box, that perhaps I may get find a treatment that will work for me. With all the new technology and developments in treatments for epilepsy, the possibilities are there. #### Support Groups Support groups for people with epilepsy are extremely helpful if you live with this condition. I have first hand experience. When I lived in Missouri, as a college student, there was an epilepsy support group run by the local independent living center, of which I later became a board member. The group was a nice place to share our experiences with epilepsy and talk about our challenges and successes. The nice thing about that organization was that they provided free transportation to and from the meetings, an issue many with epilepsy face. #### Community Resources When I moved to Southern California, I was amazed at the resources that were available! The Epilepsy Foundation located in Los Angeles provides a monthly support group meeting as well as periodic informational seminars and other interesting events. I attend their “Walk to End Epilepsy,” their annual fundraiser at the Rose Bowl in Pasadena, CA. The Epilepsy Support Network of Orange County (ESNOC) is the go-to place for any epilepsy-related information in southern California. They serve 32,000 families in Orange County. When I first arrived, I did not know what doctor to go to, so they were the perfect resource to consult with. The Epilepsy Support Network, as the name implies, is a place of support for people with epilepsy and their families. The monthly meetings, which I attend, are very helpful since you get to connect with others who are in a similar situation. There is also another mission of the ESNOC: education. For first-timers or people who want a refresher, there is always a Seizure First Aid 101 before the main meeting starts. At the meeting, there is usually a doctor or nurse, speaking about an epilepsy-related topic. I find these talks most helpful since we learn what is new in the world of epilepsy treatments, including devices, medications, diets, and surgeries, not to mention CBD. I think the best monthly meeting is in November for the “Talk to the Docs” program. That is when all the doctors get together for a panel discussion and afterward, we are all able to visit with them individually to discuss any personal questions we may have. The founder and Executive Director, Janna Moore, is an amazing and dedicated person to this cause. Since her daughter has epilepsy, she has been fighting for her and all the others who suffer from seizures, in hopes that one day we will find a cure. #### Family and friends Finally, my family has been my strength of support. They have (almost) always been there when I needed them. (One time I was at home and my mother was out doing errands and at the time I was taking Vimpat and it made me extremely anxious and depressed. I couldn’t help but cry my eyes out and I wanted her to hold and comfort me, but alas, she was not there, physically.) My family has supported me in everything I have ever done. I learned how to ride a bike and went swimming when I was a child. When I was a teenager, epilepsy was coming out of the shadows. I found information from the Epilepsy Foundation and mailed them a letter requesting brochures about it. I declared to my parents that from then on, I would call my condition “epilepsy” and would not hide it any longer. Surprisingly, they responded positively, without hesitation. It is this kind of support that I hope all people with epilepsy can have. http://esnoc.org/ https://endepilepsy.org/greaterlosangeles/ --- ***NEXT UP:*** Be sure to check out the next post by Jennifer at [livingwellwithepilepsy.com ](http://livingwellwithepilepsy.com)for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay posts](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) you may have missed. [Share your story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) Terms and Agreement I agree ![author avatar](https://secure.gravatar.com/avatar/d52fbb50f14201cb1c4aa52292adb331e89b5086a1db0c1711fed2af943b5367?s=300&d=mm&r=g) Soo Ihm Soo writes the blog Soo’s Epilepsy Corner and is a regular contributor to Living Well With Epilepsy. She lives in Orange County, California. She enjoys traveling, and has been to Europe three times. Her next journey will be just as interesting, with the RNS. [See Full Bio](https://livingwellwithepilepsy.com/author/sooihm) [ ](https://livingwellwithepilepsy.com/author/sooihm) **Categories:** Epilepsy Stories, Family, Mar 19 EBR Posts, Side Effects **Tags:** advocacy, epilepsy, seizures --- ### [Join us on Instagram Live](https://livingwellwithepilepsy.com/epilepsy-stories/join-us-on-instagram-live.html) **Published:** March 26, 2020 **Author:** Jessica K. Smith **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/04/Copy-of-Mar2020-Header4.png "Copy of Mar2020 Header(4) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/copy-of-mar2020-header4)Now that everyone is hunkered down at home we’re trying out connecting via Instagram Live. (You are at home, right? If not please go home.) #### When? Every weekday at 12pm PT / 3pm ET / 8pm GMT you will find our founder, Jessica Smith on Instagram @livingwellwithepilepsy. #### Who? We’ve pulled together a pretty great lineup and we’re looking forward to chatting with these amazing women. Feel free to check them out before you join their live chat. #### Don’t Miss It! Here’s the schedule (with more to come): **Thursday 4/9** Nathan Duncombe – @naththedad **Friday 4/10** [Jamie Wissinger – @jamiewissinger](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/ig-live-with-jamie-wissinger.html) [jamiewissinger.com](http://jamiewissinger.com/blog/) **Monday 4/13 (Special Time: 2pm ET)** Rich Tsuma – @rtsuma Kenya **Tuesday 4/14** Sharon – @be.brave.brains **Wednesday 4/15** Craig Chambliss – Neurelis **Thursday 4/16** Tori Robinson – @torierobinson10 **Friday 4/17** Jewel Davis – @lifesajewel #### Recent Chats Watch a few of our recent chats: Join us any time. And if you are interested in suggesting a topic or guest contact us via DM at @livingwellwithepilepsy or via email at jessica@livingwellwithepilepsy.com. Stay safe. -Jessica Our recent chats and guests can be found below: **Thursday 3/26** Hayley Jacobs – @hayley101 [fitsandstarts.co.uk](https://fitsandstarts.home.blog/) **Friday 3/27** [Monica Weldon – @syngap\_raretigermom](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/meet-our-next-ig-live-guest-monica-weldon.html) [bridgesyngap.org](https://bridgesyngap.org/) **Monday 3/30** [Jamie Wissinger – @jamiewissinger](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/ig-live-with-jamie-wissinger.html) [jamiewissinger.com](http://jamiewissinger.com/blog/) **Tuesday 3/31** [Fran Turauskis – @frantictwalks](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/ig-live-with-fran-turauskis-of-seizeyouradventure.html) [seizeyouradventure.com](https://www.seizeyouradventure.com/) **Wednesday 4/1** Whitney Petit – @changingfocus18 [cf-epilepsy.com](http://www.cf-epilepsy.com/) **Thursday 4/2** Emily Lawrence – @mrselawrence livingwellwithepilepsy.com **Friday 4/3** [Monica Weldon – @syngap\_raretigermom](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/meet-our-next-ig-live-guest-monica-weldon.html) [bridgesyngap.org](https://bridgesyngap.org/) **Monday 4/6** Alison Kukla – @alisonkukla epilepsy.com **Tuesday 4/7** Torie Robinson – @torierobinson10 **Wednesday 4/8** Wayne Drash – @thedrashman ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Stories --- ### [Meet our next IG Live guest: Monica Weldon](https://livingwellwithepilepsy.com/epilepsy-stories/meet-our-next-ig-live-guest-monica-weldon.html) **Published:** March 27, 2020 **Author:** Jessica K. Smith **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/03/Monica-Weldon-Portrait-300x300.jpg "Monica-Weldon-Portrait – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/meet-our-next-ig-live-guest-monica-weldon.html/attachment/monica-weldon-portrait)I am so happy Monica Weldon, CEO and Founder of [Bridge the Gap: Syngap Education and Research Foundation](https://bridgesyngap.org/), has time in her busy schedule to chat with the Living Well With Epilepsy community! If you have not met Monica she is fantastic. This woman is a force to be reckoned with–she is a mom of a child with an ultra rare disease who has successfully started a foundation and raised enough funds (and momentum) to support research in a disease state that has barely a handful of cases. In addition, she is smart, fun and kind and generally a delight to be around! These days Monica and her team have been busy. I asked her to send over a quick update of what their organization has been up to, but first let me give you some background on SYNGAP1. #### What is SYNGAP1 The team at [Bridge the Gap: Syngap Education and Research Foundation](https://bridgesyngap.org/) have put together this video featuring researchers, clinicians and parents. The team at [Bridge the Gap: Syngap Education and Research Foundation](https://bridgesyngap.org/) have shared the following projects with us. Check them out when you have a minute: - [Second edition Syngap1 Resource Guide](https://bridgesyngap.org/wp-content/uploads/2020/03/SYNGAP1-Resource-GUIDE-FINAL-2020-2.pdf) – translated in 8 languages - [Newly Published Syngap1 study on the disease burden data](https://www.valueinhealthjournal.com/article/S1098-3015(19)31881-9/fulltext) - [The 4th Center of Excellence is to be announced](https://bridgesyngap.org/syngap-labs/) - [ First neuro-gut study with 4th center of excellence](https://bridgesyngap.org/syngap-labs/) - [Patient-Focused Drug Development Meeting](https://bridgesyngap.org/syngapinternationalconference/) - [First industry round table ](https://bridgesyngap.org/for-industry/) So, whether you are a family affected by SYNGAP1, (or other special needs parent), a researcher, clinician, a curious person with epilepsy or just a fellow advocate, I hope you will join my chat with Monica Weldon on 3/27 on Instagram Live at 12pm PT/ 3pm ET / 7pm GMT. You can find the chat at @livingwellwithepilepsy. Don’t miss it! ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Stories --- ### [Balancing uncontrolled epilepsy and exercise](https://livingwellwithepilepsy.com/epilepsy-stories/balancing-uncontrolled-epilepsy-and-exercise.html) **Published:** March 25, 2020 **Author:** Guest Contributor **Excerpt:** I have uncontrolled epilepsy and a trigger for me is intense exercise. This has caused frustration, especially now that I am a mom, but I never let it stop me from exercising. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/10/blackandwhite-pic-scollard-234x300.jpg "blackandwhite-pic-scollard – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2020/personal-epilepsy-stories/balancing-uncontrolled-epilepsy-and-exercise.html/attachment/blackandwhite-pic-scollard)Sarah’s Story I love running. I just love the feeling when you get out there and can feel the sensation of those feet on the ground. It is a wonderful feeling. I have loved running since I started at the age of 13. However, my ongoing ability to run whenever I wanted and to the intensity I desire changed when I was diagnosed with epilepsy at the age of 19. I have focal seizures with impaired awareness and one common trigger for me is intense exercise. This has caused an ongoing frustration for me, but I never let it stop me from exercising. I can still run, just need to do it at a moderate pace. I can cycle on a stationary bike to a maximum intensity and not have a seizure, but for some reason running often can trigger my seizures. #### Becoming a mother I am now a mother to a 16 month old wonderful little boy. Isaac is happy and playful and my pregnancy was great. No issues at all during and my seizures reduced to about 6-8 a month. Since becoming a new mom, my exercise has been occasional runs or pilates, but not much. I go for daily walks of 3-5 miles, but that still doesn’t feel like much to me. I have gained weight as a result of my new medication making me feel hungry all the time and also just having a bit more of a belly than I did before I was pregnant! I want to get back into pre-pregnancy shape again. But, how do I do this when I am always tired, work full-time, and don’t want to risk a seizure when I am home alone with Isaac? This has been an ongoing struggle over the last year. However, with my husband’s support, I have started to run again. A couple of days a week of 3-4 miles and it feels great. I make sure I don’t give in to my urge of going a bit more on one day, just so I can feel more confident I won’t have a seizure. I have also incorporated legs, arms, and ab workouts into my weekly routine. #### Finding a routine The move to overcome my fears and constant worries is a good thing. I love feeling a little bit sore. Feels wonderful! I love the fact that I know I am helping my body. I also know that exercise is beneficial to controlling one’s epilepsy and I want to make sure I don’t let any worries prevent me from aiding a decrease in seizures. The way I’ve been able to do this is to exercise after Isaac has gone to bed. I’m usually very hungry by about 7pm, so I make sure to eat a banana and other quick food before I start the bedtime bath and read a story routine. My husband has usually gotten back from work around that time, and so I pre-plan by getting into my running gear before bedtime and then once Isaac is asleep, I run! It is a hard thing to balance all of these things in our lives, but it is wonderful to still feel those feet on the ground. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories --- ### [Dreaming big in difficult times](https://livingwellwithepilepsy.com/epilepsy-stories/dreaming-big-in-difficult-times.html) **Published:** March 24, 2020 **Author:** Hayley Jacobs **Excerpt:** The topic for this blog was hopes and dreams for the next decade, which is a really scary prospect when you have a medical condition which isn’t stable. This is particularly relevant in this age of Coronavirus and the increasing number of cases of COVID-19. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/12/new-profile-pic-edited-version-300x300.jpeg "new-profile-pic-edited-version – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=21853)The topic for this blog was hopes and dreams for the next decade, which is a really scary prospect when you have a medical condition which isn’t necessarily going to stay stable. This is particularly relevant in this age of Coronavirus and the increasing number of cases of COVID-19. --- NOTE: Join Jessica and Hayley on [Instagram Live](https://www.instagram.com/livingwellwithepilepsy/) 3/24 at 12pm PT/ 3pm ET/7pm GMT as they chat about how this story is relevant to so many now! --- However, I do think it’s a great incentive to those who have epilepsy and other chronic illnesses to be forward thinking and positive, as we spend so much of our time (especially if our seizures aren’t controlled) living from one day to the next, never knowing when plans might need to be cancelled. #### Dreaming Big I’m 37 and my biggest dream is one which existed before my epilepsy became unstable and is kind of ironic as now, I’m currently not working, I might actually have more time to work towards it. I really want a PhD by the time I’m 50. Don’t ask me why, I don’t need one for any specific purpose, but I love learning and academia. And yes, it’s entirely possible to learn without working towards a PhD, but that is my personal goal. I was a teacher and as soon as I’d completed my teaching qualifications, I began contemplating what I was going to do next. It’s also one which I like as since, barring the odd very slight memory lapse, I don’t really have any cognitive impairment, it’s not something which I can see epilepsy getting in the way of (plenty of other things, such as my husband, might get in the way, but not epilepsy!). As far as hopes and dreams go it’s tangible and a little bit ludicrous at the same time. --- Related:[Leila’s Ideas: Don’t Give Up on Your Dreams](https://livingwellwithepilepsy.com/2016/leilas-ideas/leilas-ideas-dont-give-up-on-your-dreams.html) --- #### Setting Goals My next dream is to make the contributions I have made towards the epilepsy community continue to count. I’ve never been driven by money (this is probably a good things since most epilepsy organisations are charitable foundations) but I’d love to continue to see my articles being published and shared and be able to make a physical contribution to ending stigma relating to hidden and chronic conditions. I’m working really hard at this at the moment to establish myself as a freelance writer and my long term goal is to be used regularly in the healthcare sector for research articles and have also been reaching out to local schools and colleges (using my past work experience as leverage) to go in and give talks to students about epilepsy awareness, not so much from a medical perspective, more in terms of helping friends or family deal with it and giving practical advice which is often not covered (for example if you have a friend with epilepsy organising inclusive activities every once in a while which don’t involve late nights or alcohol and picking up missed classwork for them). #### Making a difference When I trained to teach, I did so because I wanted to make a difference, and although I can’t teach at the moment that continues to be my driving force and using my epilepsy and whichever direction it leads me in seems to be as good a way as any other. To read more about my epilepsy journey, please visit my blog at [www.fitsandstarts.co.uk](https://fitsandstarts.home.blog/) Terms and Agreement I agree ![author avatar](https://secure.gravatar.com/avatar/bb67b1e45d0e80a2c87ad47e6bebcb92c477042f0211c4104141de3fe2b83507?s=300&d=mm&r=g) Hayley Jacobs [See Full Bio](https://livingwellwithepilepsy.com/author/hayleyj101) [ ](https://livingwellwithepilepsy.com/author/hayleyj101) **Categories:** Epilepsy Stories --- ### [Telemedicine visits with your doctor during a pandemic](https://livingwellwithepilepsy.com/advocacy-awareness/healthcare/telemedicine-in-a-pandemic.html) **Published:** March 17, 2020 **Author:** Jessica K. Smith **Excerpt:** A global pandemic has forced hospitals to send providers and patients home for quarantines. Will telemedicine be a solution to help care for the chronically ill? **Content:** During this age of hand sanitizer, quarantines and national lockdowns, how will the current health system handle the needs of those living with chronic illness. In order to quell my own curiosity, I developed a survey on telemedicine. Since knowledge and understanding is an early barrier in healthcare it was important to have a sense of how well the general public understood the term “telemedicine”. So, we ran a quick poll on Facebook and found that more than 60% of respondents did not know the terms “telehealth” or “telemedicine”. This quick poll was viewed by more than 1000 people, and more than 75 people actively participated in the poll. #### What is telemedicine? According to the [Health Resources Services Administration](https://www.healthit.gov/faq/what-telehealth-how-telehealth-different-telemedicine), telemedicine refers to remote clinical services offered by a healthcare provider. This can be done using technology such as videoconferencing. #### How can telemedicine help during a pandemic? As noted in an article featured on [mHealthIntelligence](https://mhealthintelligence.com/news/coronavirus-scare-gives-telehealth-an-opening-to-redefine-healthcare), “COVID-19 is different because we do not know all the factors surrounding transmission and its effects on patients,” [Jason Hallock, Chief Medical Officer ](https://www.linkedin.com/in/rjhallock/)for [SOC Telemed,](https://www.soctelemed.com/) points out. “Because coronavirus is new and there have been a significant number of deaths, the uncertainty surrounding that is scaring both patients and the general public. Our healthcare workers do not have all the answers yet. Telehealth providers are challenged to make recommendations when there are still many unknowns. Telemedicine can be useful to evaluate and reassure patients in alternative settings, and also can be used to help patients decide who needs to be seen in the hospital or an alternative setting like an urgent care.” Hallock says telehealth can help by enabling healthcare providers to treat isolated patients, thus preventing the spread of what has so far been an extremely contagious virus. #### Telemedicine in Neurology If your neurologist has not yet suggested a visit using telemedicine, you can bet the opportunity will come up soon enough. Please take a minute to complete our survey on telemedicine in neurology below: ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Healthcare **Tags:** coronavirus, covid-19, pandemic, survey, telemedicine --- ### [Epilepsy Blog Relay: Time for a little compassion in epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/compassion-in-epilepsy.html) **Published:** March 5, 2020 **Author:** Guest Contributor **Content:** ***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***.*** #### Kenny’s Story One thing that you should never say to someone with epilepsy is, “You’ll be okay, I’m sure!” Only recently, has this been getting on my nerves. I have to go in to get another [EEG](https://livingwellwithepilepsy.com/2015/aboutus-lwwe/emilys-perspective/emilys-perspective-help-child-eeg.html). I have aged out of pediatrics and they want to do a check-up before prescribing my medication. Since this has come up so suddenly, I have tried to talk to my friends about it because I’m nervous and stressed. What if something goes wrong and I am forced into regular hospital visits? I’m almost halfway through my college career and the last thing I need is to be flooded with treatment again. When I have texted my friends the overall answer for me being stressed and nervous is this one sentence: you will be fine. What hurts me the most about this is the underlying feeling that they do not care enough to listen. This is something that I was only diagnosed with four years ago when I was a teenager. --- **»Related: [Epilepsy Blog Relay: Life with epilepsy in high school](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/epilepsy-in-high-school.html)** --- #### Anxiety and fear Maybe someone can explain to me why I find this answer so annoying? Maybe I am overreacting, and the nerves of my upcoming appointment are taking over? All I can think when I hear this is, are you a doctor? Are you 100% confident that I will be okay? Do you know what this means for my day to day life if something is wrong? What if I have had a few seizures and because they aren’t as often as they used to be, I don’t notice them? I don’t want to make it seem like my issues are more important than others, but I don’t think people get that epilepsy is a disease. Just because they cannot see it, they don’t think it is a big deal. Epilepsy is a physical issue, isn’t it? There are [**millions of us living with epilepsy all over the world**](https://livingwellwithepilepsy.com/epilepsy) and for once I just want someone to say, “I know you’re nervous and I cannot understand it myself, but do you want to talk about it?” I’m not expecting people to understand what we go through because they don’t have our condition, but what I hope is that someone will take the time to understand that I do have this disease and it does interrupt my life. #### The importance of compassion Seizures made my life hell for two years. When my friends were all getting their licenses, I was told that I had about 20 seizures a day. I went to New York about once a month to have someone attach electrodes to my head. I was going to the grocery with my EEG on children approached me asking what was wrong with me. So, I hope that people who don’t experience the life we do, start understanding that being there and listening is all we want. I don’t want someone telling me I will be okay all of the time. I want someone saying, “I know you’re scared and I’m here for you.” --- **NEXT UP:** Be sure to check out the next post tomorrow at . ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Mar 20 EBR Posts --- ### [Hot Neurobiology Topics in Epilepsy: Climate Change and My Epilepsy? ](https://livingwellwithepilepsy.com/epilepsy-news-and-research/neurobiology/climate-change-and-my-epilepsy.html) **Published:** March 3, 2020 **Author:** Neurobiology Commission ILAE **Content:** ***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***.*** #### Hot Neurobiology Topics in Epilepsy Kathryn A. Davis, MD, MSTR, Assistant Professor of Neurology at the University of Pennsylvania and member of the [ILAE NBC](https://livingwellwithepilepsy.com/author/ilae-nbc) recently had the opportunity to connect with Sanjay Sisodiya, MRCP, PhD, on the topic of climate change and the impact it is having on epilepsy. Dr. Sanjay Sisodiya is Professor of Neurology at UCL Queen Square Institute of Neurology and Honorary Consultant Neurologist at the National Hospital for Neurology and Neurosurgery and the Epilepsy Society. Dr. Sisodiya studied medicine at the University of Cambridge and Guy’s Hospital, and trained in Neurology in Oxford and at the National Hospital for Neurology and Neurosurgery. He was awarded a PhD for working in brain magnetic resonance imaging in epilepsy. Dr. Sisodiya’s main interests are in epilepsy, especially difficult-to-treat epilepsy, epilepsy genetics and treatment-response genetics, which are [also his key research interests](http://www.epipgx.eu/). He runs a specialist service for the evaluation and management of epilepsy in adults. Dr. Sisodiya is the first-author of a paper published in [Epilepsia Open](https://onlinelibrary.wiley.com/doi/full/10.1002/epi4.12359) entitled, [“Climate change and epilepsy: Time to take action.”](https://livingwellwithepilepsy.com/wp-content/uploads/2020/02/Sisodiya_et_al-2019-Epilepsia_Open.pdf) #### Excerpt of journal article [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/02/Picture1.png "Picture1 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/wp-content/uploads/2020/02/Sisodiya_et_al-2019-Epilepsia_Open.pdf)[Climate change and epilepsy: Time to take action – Sisodiya – – Epilepsia Open – Wiley Online Library](https://eur01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fonlinelibrary.wiley.com%2Fdoi%2Ffull%2F10.1002%2Fepi4.12359&data=02%7C01%7C%7C5f3ae70fff904cdc152008d7909ba80f%7C1faf88fea9984c5b93c9210a11d9a5c2%7C0%7C0%7C637136870546082563&sdata=K0NYUqwBx6jKA%2FPbB2bpXS6eIRaPch3S2mlkkBVJaw8%3D&reserved=0) Climate change is the biggest challenge facing humanity today. The associated global warming and humidification, increases in the severity and frequency of extreme climate events, extension of the ranges of vector‐borne diseases, and the consequent social and economic stresses and disruption will have major negative consequences on many aspects of health care. [PDF of Full Article ](https://livingwellwithepilepsy.com/wp-content/uploads/2020/02/Sisodiya_et_al-2019-Epilepsia_Open.pdf) [onlinelibrary.wiley.com](https://eur01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fonlinelibrary.wiley.com%2Fdoi%2Ffull%2F10.1002%2Fepi4.12359&data=02%7C01%7C%7C5f3ae70fff904cdc152008d7909ba80f%7C1faf88fea9984c5b93c9210a11d9a5c2%7C0%7C0%7C637136870546082563&sdata=K0NYUqwBx6jKA%2FPbB2bpXS6eIRaPch3S2mlkkBVJaw8%3D&reserved=0) #### Climate Change and Epilepsy [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/02/Sanjay-LR-300x200.jpg "Sanjay-LR – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=21989)We have asked Dr. Sisodiya to answer questions regarding a hot topic in epilepsy: Will climate change impact people with epilepsy? **ILAE Neurobiology Commission: Dr. Sisodiya, how will climate change impact people’s lives and healthcare? What is the evidence?** **Dr. Sanjay Sisodiya:** In science and clinical practice, we are always looking for the best evidence for what we do. The evidence base for the climate emergency we face is amongst the strongest in any field of science: over 11,000 scientists were signatories to a document warning of the challenge we face (). People’s lives will undoubtedly be affected. Whilst scientists are careful not to blame individual climate events (e.g. such as the current bushfires in Australia) on climate change, the frequency and severity of such events, and of a global warming of the climate, and are due to climate change. There is concern that healthcare will also be greatly affected, and efforts are being made to address this concern (e.g. The 2019 report of The Lancet Countdown on health and climate change: ensuring that the health of a child born today is not defined by a changing climate. Watts N, et al. Lancet. 2019 Nov 16;394(10211):1836-1878). **NBC: Will there be specific impacts to people living with epilepsy?** **SS:** It is important to appreciate that there are separate points here. Climate change will affect people’s lives across many aspects, and all over the world – and people with epilepsy will be affected as will everyone. We all contribute to climate change through our daily lives, to a greater or lesser extent, and in this sense, we all have a role to play, whether through trying to reduce our own carbon emissions at the personal level, or through trying to promote change in our workplaces, by our employers, or even our governments. Moreover, some people with epilepsy may have less resilience or fewer resources to meet the new and added challenges that climate change will throw up. Finally, it is possible that climate change will specifically affect people with epilepsy, for example by making seizures more likely as global temperatures rise, or through increasing levels of personal stress – but these are areas for which currently we do not have much evidence and that need more research. But we must remember that absence of evidence is not evidence of absence! **NBC: What can people living with epilepsy and their caregivers do to lessen the impacts?** **SS:** We can all try to do what we can. The size of the challenge is great. Action at international collaborative and national governmental levels is likely to be essential, but we can all also take steps ourselves. There are simple ways to work out your own carbon footprint, for example: or . You can then see what you might to do reduce your own footprint. For example, for many people, flying is a major contributor to their carbon footprint at an individual level. As always, people with epilepsy should not take action that might compromise their own healthcare. **NBC: What can epilepsy providers do to lessen the impacts?** **SS:** There are many things – again flying is probably a major area for attention. We discuss this in more detail in our article in Epilepsia Open. **NBC: What are the unanswered questions regarding the impact of climate change on epilepsy? What advances can we expect in the next 5-10 years?** **SS:** We need to work out what the consequences of climate change will be specifically on epilepsy. We need to do the research that will provide answers to questions such as whether and which aspects of climate change might generate the biggest new risks for people with epilepsy, or are most likely to increase the frequency or intensity of seizures, what the effects of climate change-related stress might be, or whether rising temperatures and other effects of climate change might pose risks to the storage and distribution of treatments used in epilepsy. There are lots of areas to look at. A group of concerned doctors and scientists have banded together to promote work in this area: we are called EpilepsyClimateChange. Time is of the urgency, so we hope to have answers within the next few years. --- Living Well With Epilepsy has partnered with the International League Against Epilepsy (ILAE) to bring you a series on [**Hot Neurobiology Topics in Epilepsy**](https://livingwellwithepilepsy.com/author/ilae-nbc). This initiative is led by the [ILAE Neurobiology Commission (NBC)](https://www.ilae.org/about-ilae/topical-commissions/commission-on-neurobiology), which is chaired by Aristea Galanopoulou, MD, PhD (USA). Dr. Galanopoulou, Professor of Neurology and Professor of Neuroscience, [Albert Einstein College of Medicine](http://www.einstein.yu.edu/research/), works towards promoting neurobiology research in epilepsy through advocacy, education, training, proposals of optimal methodologies and infrastructure improvements. The NBC organizes activities aimed at informing the progress and best practices in neurobiology of epilepsy research, including symposia, workshops and reports. --- **NEXT UP:** Be sure to check out the next post tomorrow at . ![author avatar](https://secure.gravatar.com/avatar/221df97395adf91b5ac295fd08f0abd89488b2f870653236de23b8703453d0ec?s=300&d=mm&r=g) Neurobiology Commission ILAE The Neurobiology Commission (NBC) of the ILAE, works towards promoting neurobiology research in epilepsy through advocacy, education, and training. [See Full Bio](https://livingwellwithepilepsy.com/author/ilae-nbc) [ ](https://livingwellwithepilepsy.com/author/ilae-nbc) **Categories:** Mar 20 EBR Posts, Neurobiology --- ### [Epilepsy Blog Relay: Living with VNS and RNS](https://livingwellwithepilepsy.com/epilepsy-stories/living-with-vns-and-rns.html) **Published:** March 2, 2020 **Author:** Guest Contributor **Content:** ***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***.*** #### Lauren’s story I’m 36 now and had my first seizure when I was 23 in my sleep. Why? Who knows. There’s still no clear answer about anything. #### VNS and RNS I have the VNS and the RNS and the seizures still overpower both of these gadgets. I am learning to live with these but my seizures are still uncontrolled and have a mind of their own. Just when I think I’m doing good for a week…BAM… I have another seizure. #### What is VNS? According to LivaNova, the company that provides the VNS Therapy System, VNS is delivered through a device that sends mild pulses to the vagus nerve at regular intervals throughout the day in an effort to prevent seizures. The hope is that an additional dose of therapy may stop or shorten your seizure, decrease its intensity and improve your recovery. VNS Therapy includes a short outpatient procedure which takes about an hour. VNS Therapy does not involve brain surgery. #### What is RNS? According to NeuroPace, Inc., the company that provides the RNS® System, The RNS® System consists of a small, implantable neurostimulator connected to leads (tiny wires) that are placed in up to two seizure onset areas. It comes with a simple remote monitor that you use at home to wirelessly collect information from the neurostimulator and then transfer it to the Patient Data Management System (PDMS). Your doctor can log into the PDMS at any time to review accurate, ongoing information about your seizure activity and treatment progress. This helps your doctor learn more about your seizures and improve your care. The RNS® System involves a surgical procedure that is performed by a trained neurosurgeon. Prior to the procedure, your medical team conducts diagnostic testing to identify the location in your brain where your seizures start. During the procedure, your surgeon positions the leads at the seizure source and places the neurostimulator in your skull. Once implanted, the device is hidden under your scalp—unnoticeable to you and others. Most patients go home the next day. The RNS System is a reversible treatment that does not involve removing any brain tissue. --- **»Related:** [Epilepsy Blog Relay: A Lifetime with epilepsy and a little help from VNS](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/epilepsy-blog-relay-a-lifetime-with-epilepsy-and-a-little-help-from-vns.html) --- Then my mom is in my face in the middle of the night crying over me like it’s my first one. I still can’t help but apologize to her every single time I have one. #### Taking a positive approach All the meds I’ve tried — and all the surgeries — and my seizures are still not controlled. But it could be worse, right? I had some pretty bad thoughts but out of all this I was blessed with a beautiful daughter. She has been my strength because honestly if it weren’t for her, I would’ve given up a long time ago. --- **NEXT UP:** Be sure to check out the next post tomorrow at . ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Mar 20 EBR Posts **Tags:** DBS, Neurostimulation, Refractory epilepsy, RNS, VNS --- ### [FDA approves Epidiolex, first medication derived from marijuana](https://livingwellwithepilepsy.com/aboutepilepsy/treatments/fda-approves-epidiolex-first-medication-derived-from-marijuana.html) **Published:** June 26, 2018 **Author:** Jessica K. Smith **Excerpt:** FDA has approved Epidiolex for the treatment of seizures associated with two rare and severe forms of epilepsy, Lennox-Gastaut syndrome and Dravet Syndrome. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/06/growingfacility-640x428.jpg "Photograph by Tim Bishop 10th November 2003 07776 187123 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/aboutepilepsy/treatments/fda-approves-epidiolex-first-medication-derived-from-marijuana.html/attachment/photograph-by-tim-bishop-10th-november-2003-07776-187123)*Photograph by Tim Bishop*The [U.S. Food and Drug Administration](https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm611046.htm) has approved [Epidiolex (cannabidiol)](https://www.greenwichbiosciences.com/about-us/news/greenwich-biosciences-announces-fda-approval-epidiolex%C2%AE-cannabidiol-oral-solution-%E2%80%93) \[CBD\] oral solution for the treatment of seizures associated with two rare and severe forms of epilepsy, Lennox-Gastaut syndrome and Dravet Syndrome. This is the first plant-derived cannabinoid prescription medicine. [Lennox-Gastaut Syndrome](https://livingwellwithepilepsy.com/2018/aboutepilepsy/family-pushing-boundaries-of-lgs.html) and [Dravet Syndrome](https://livingwellwithepilepsy.com/2010/epilepsy-news/shining-spotlight-on-dravets-syndrome.html), which develop in childhood, are rare, severe forms of epilepsy. Many patients with LGS and Dravet syndrome require multiple seizure medications and the majority are resistant to currently approved anticonvulsant medications. #### What is Dravet Syndrome According to the Dravet Syndrome Foundation, Dravet syndrome is a rare, catastrophic, lifelong form of epilepsy that begins in the first year of life with frequent and/or prolonged seizures. Previously known as Severe Myoclonic Epilepsy of Infancy (SMEI), it affects 1:15,700 individuals, 80% of whom have a mutation in their [SCN1A gene](https://www.dravetfoundation.org/what-is-dravet-syndrome/). “We are very pleased to see the approval of EPIDIOLEX® for Dravet and Lennox-Gastaut Syndromes, says Dravet Syndrome Foundation executive director Mary Anne Meskis. “While each of our disorders are different in terms of etiology, both of our communities suffer from intractable seizures, an increased risk of mortality, and many devastating co-morbid conditions that significantly affect quality of life.” For more on Dravet Syndrome, visit the foundation’s website at . #### What is Lennox-Gastaut Syndrome According to Christina SanInocencio, Executive Director of the [LGS Foundation](http://www.lgsfoundation.org/), “Today’s announcement gives individuals with Lennox-Gastaut Syndrome and their families much needed hope.” Lennox-Gastaut Syndrome (LGS) is a rare and often debilitating form of childhood-onset epilepsy. The syndrome is characterized by a triad of signs including multiple [seizure types](http://www.ilae.org/Visitors/Centre/Definition_Class.cfm), moderate to severe cognitive impairment, and an abnormal EEG with slow spike-wave complexes. This triad of mixed seizures, abnormal EEG and intellectual impairment represents one of the most difficult forms of epilepsy to treat. LGS is also a physically dangerous epilepsy syndrome of childhood because of the frequent falls, injuries, and cognitive impairment that can severely limit quality of life. For more information on Lennox-Gastaut Syndrome visit . #### EPIDIOLEX to patients “We have tried many medications for [Spencer’s seizures](https://livingwellwithepilepsy.com/2015/epilepsy-blog-relay/epilepsy-blog-relay-diagnosis-of-lgs.html), and all failed. While LGS seizures are intractable and Epidiolex is yet another medicine, I am hopeful. It has proven helpful enough to obtain FDA approval, and perhaps my child can benefit as well,” notes [Elizabeth, mom to Spencer](https://livingwellwithepilepsy.com/2015/epilepsy-blog-relay/epilepsy-blog-relay-diagnosis-of-lgs.html). According to a release from the company that makes the drug, “EPIDIOLEX will be marketed in the U.S. by Greenwich Biosciences, the U.S. subsidiary of GW Pharmaceuticals plc. As part of the approval process, EPIDIOLEX must be rescheduled from its current Schedule I before it can be made available to patients. Rescheduling is expected to occur within 90 days. Access is expected to be similar to other branded antiepileptic drugs and EPIDIOLEX is expected to be available to appropriate patients by Fall 2018.” #### For additional information: - [FDA and Marijuana](https://www.fda.gov/NewsEvents/PublicHealthFocus/ucm421163.htm) - [NIH: Lennox-Gastaut Syndrome Information Page](https://www.ninds.nih.gov/Disorders/All-Disorders/Lennox-Gastaut-Syndrome-Information-Page) - [NIH: Dravet Syndrome Information Page](https://www.ninds.nih.gov/Disorders/All-Disorders/Dravet-Syndrome-Information-Page) - [NIH: Marijuana as Medicine](https://www.drugabuse.gov/publications/drugfacts/marijuana-medicine) - [FDA: Approved Drug Questions and Answers](https://www.fda.gov/Drugs/ResourcesForYou/Consumers/ucm054420.htm) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Research, Treatments **Tags:** CBD, epidiolex, fda, marijuana, medical marijuana --- ### [Hot Neurobiology Topics in Epilepsy: What you should know about caffeine and epilepsy](https://livingwellwithepilepsy.com/epilepsy-news-and-research/neurobiology/caffeine-and-epilepsy.html) **Published:** February 11, 2019 **Author:** Neurobiology Commission ILAE **Content:** #### New Feature on Living Well With Epilepsy Living Well With Epilepsy has partnered with the International League Against Epilepsy (ILAE) to bring you a series on **Hot Neurobiology Topics in Epilepsy**. This initiative is led by the [ILAE Neurobiology Commission (NBC)](https://www.ilae.org/about-ilae/topical-commissions/commission-on-neurobiology), which is chaired by Aristea Galanopoulou, MD, PhD (USA). Dr. Galanopoulou, Professor of Neurology and Professor of Neuroscience, [Albert Einstein College of Medicine](http://www.einstein.yu.edu/research/), works towards promoting neurobiology research in epilepsy through advocacy, education, training, proposals of optimal methodologies and infrastructure improvements. The NBC organizes activities aimed at informing the progress and best practices in neurobiology of epilepsy research, including symposia, workshops and reports. Thank you to the commission members for spearheading this initiative. We hope you enjoy this series. --- Kathryn A. Davis, MD, MSTR, Assistant Professor of Neurology at the University of Pennsylvania and member of the ILAE NBC recently had the opportunity to connect with Astrid Nehlig, PhD, a research director at the French Medical Research Institute, INSERM in Strasbourg. Dr. Davis has shared her interview with Dr. Nehlig where they discuss the topic of Caffeine and Epilepsy. Dr. Nehlig’s main research interests are brain metabolism, brain development, absence and temporal lobe epilepsy, and the effects of coffee and caffeine on health, mainly on brain function. Dr. Nehlig has published her research extensively, given invited lectures worldwide and is on the editorial board of multiple prominent epilepsy journals. #### Caffeine and Epilepsy [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/02/nehlig-261x300.jpg "nehlig – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2019/neurobiology/caffeine-and-epilepsy.html/attachment/nehlig)**ILAE Neurobiology Commission: Dr. Nehlig, does caffeine impact seizure control? What’s the evidence?** **Astrid Nehlig, PhD:** The number of available studies on the effects of caffeine on seizures is scarce. Mostly two clinical studies, one performed in a hospital on 174 patients and a large questionnaire study including 105,941 nurses did not report any difference in seizure control and occurrence between days with or with no caffeine (in the second study, the mean daily caffeine intake was 437 mg, i.e. about 3-4 cups of coffee). Likewise, in a cohort of 35,596 children no association was reported between the antenatal use of caffeine by pregnant women and the risk of occurrence of febrile seizures in the first 3 months of life. Similarly, in premature babies with apnea, the treatment with caffeine citrate (30 mg/kg) does not impact seizure occurrence and the risk of epilepsy. **NBC: Do coffee or drinks with caffeine have the same effects on different types of seizures?** **AN:** As mentioned in the previous answer, caffeine intake does not seem to impact seizure occurrence whatever the type of seizures. --- **Related Article:** [**4 ways to manage exhaustion**](https://livingwellwithepilepsy.com/2019/livingwell/4-ways-to-manage-exhaustion.html) --- **NBC:** **Does everyone react the same way to coffee or drinks with caffeine?** **AN:** The answer here is no. There are some case reports mentioning the occurrence of seizures and even status epilepticus after the ingestion of caffeine. This rather occurs after the ingestion of high to very high daily doses of caffeine, most often in the range of 500-1000 mg/day. As a memo a cup of coffee contains about 100-150 mg caffeine (125 ml), a cup of tea 40-60 mg (125 ml), a cola drink 40 mg (33 ml), and a can of energy drink 80-160 mg according to the size (250-500 ml). In fact it seems like the threshold for seizures is an individual factor that may vary and people with epilepsy can quite easily notice at which dose and in which conditions a potential increase in seizure occurrence starts and they should be advised to maintain their daily intake below this dose. **NBC:** **Should people with seizures be drinking caffeinated beverages or should they avoid it and when?** **AN:** From the available data, it does not appear that people with epilepsy should avoid drinking caffeinated drinks as long as they do not go over their individual limit. They could be advised to avoid drinking a large quantity of caffeinated drinks in a short amount of time, especially on an empty stomach while a reasonable timed caffeine intake does not seem to impact seizure occurrence. In animal studies, it has even be reported that the chronic exposure to caffeine is protective, reduces the occurrence of seizures and has no deleterious consequences as reported for an acute intake. **NBC: Does caffeine change the effects of seizure medications?** **AN:** The number of studies on this point is very limited, especially in humans. It was reported that in healthy volunteers that the tissue half-like of carbamazepine is doubled in the presence of 300 mg of caffeine while its bioavailability is reduced by 32%. Phenytoin and phenobarbital seem to alter caffeine metabolism as well. More studies are needed on this point. **NBC:** **Do pregnant women have to be more careful about drinking coffee or drinks with caffeine?** **AN:** Pregnant mothers should remain in the advised daily limit of 200 mg caffeine intake at which no report of increased risk of seizures has been observed in humans. A slight increased risk has been reported in animal studies but to the best of the present knowledge and based on the study cited above concerning the cohort of Danish pregnant women, caffeine consumption in reasonable amounts does not seem to impact the seizure risk in children. **NBC: What are the unanswered questions regarding caffeine and epilepsy?** **AN:** At this point, we have only a limited knowledge on the interaction between various seizure medications and caffeine. It may well be that the reports of single cases with seizures might be due to the interaction between caffeine and the medication as much as individual sensitivity. We also need to explore the genetic bases of caffeine metabolism, actions on the body and brain to better understand the inter-individual differences in the sensitivity to caffeine, especially in people with epilepsy. ***Thank you to Drs. Nehlig and Davis for this informative interview on caffeine and epilepsy. We look forward to future Hot Neurobiology Topics in Epilepsy.*** ![author avatar](https://secure.gravatar.com/avatar/221df97395adf91b5ac295fd08f0abd89488b2f870653236de23b8703453d0ec?s=300&d=mm&r=g) Neurobiology Commission ILAE The Neurobiology Commission (NBC) of the ILAE, works towards promoting neurobiology research in epilepsy through advocacy, education, and training. [See Full Bio](https://livingwellwithepilepsy.com/author/ilae-nbc) [ ](https://livingwellwithepilepsy.com/author/ilae-nbc) **Categories:** Epilepsy Research, Neurobiology --- ### [Epilepsy Blog Relay: Katy's experience with Myoclonic Epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/experience-with-myoclonic-epilepsy.html) **Published:** March 1, 2020 **Author:** Guest Contributor **Excerpt:** I was diagnosed with epilepsy in 2013, at the age of 24. I have juvenile myoclonic epilepsy and experience tonic clonic seizures. **Content:** ***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***.*** #### Katy’s story I was diagnosed with [epilepsy](https://livingwellwithepilepsy.com/epilepsy) in 2013, at the age of 24. I work in New York City and went out at lunchtime – and had a seizure on the sidewalk. Some good Samaritan (I still don’t know who it was) called the ambulance and notified my job. I have [juvenile myoclonic epilepsy](https://livingwellwithepilepsy.com/2014/personal-epilepsy-stories/sams-story-juvenile-myoclonic-epilepsy.html) and experience tonic clonic seizures. I have had myoclonic jerks my whole life and never suspected anything, but my neurologist said I get them more than the average person. Unfortunately, I don’t experience an [aura](https://livingwellwithepilepsy.com/2016/aboutus-lwwe/emilys-perspective/emilys-perspective-auras.html), but people around me can sense something is off. My husband can spot it so easily. --- **»Related:** [**Words resonate: College roommate reconnects over epilepsy**](https://livingwellwithepilepsy.com/2016/personal-epilepsy-stories/words-resonate-college-roomate-reconnects-epilepsy.html) --- #### Courage amidst uncertainty In August 2013, my parents found me on the dining room floor. After my diagnosis, I managed to last two years seizure-free and finally began to drive again. Then, I had another seizure October 2016. I also had a seizure a month before my wedding after getting out of driving my car. In NYC, the [epilepsy driving law](https://www.epilepsy.com/sites/core/files/atoms/files/Driving-and-Epilepsy-Poster-2011.pdf) is you must be a year seizure-free. In the beginning, this was so frustrating. Now, I have no desire to drive. Luckily, I work in NYC and can rely on mass transit. One benefit to that episode was I finally decided to speak out about my epilepsy. Last year (with the help of my amazing sister) I planned a “Seize the Night” Zumbathon at our gym and raised over $2,700 dollars. The proceeds of this fundraiser were donated to the Epilepsy Foundation. Thank you to everyone who participated! I then went eleven months seizure-free free until May 2019. Since then I’ve had two stays in the Neuro ICU within four months. Wish me luck! --- **NEXT UP:** Be sure to check out the next post tomorrow at . ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Mar 20 EBR Posts --- ### [Dose mapping and Breakthrough Seizures, What is The Link?](https://livingwellwithepilepsy.com/aboutepilepsy/breakthrough-seizures.html) **Published:** January 15, 2020 **Author:** Jessica K. Smith **Excerpt:** Every person living with epilepsy faces a different journey, but the goal is the same: freedom from breakthrough seizures. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2020/01/Barry-Gidal.jpg "Barry-Gidal – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2020/aboutepilepsy/breakthrough-seizures.html/attachment/barry-gidal)Dose mapping and Breakthrough Seizures *This blog post was submitted by [Eisai](https://livingwellwithepilepsy.com/partners/eisai), the Presenting Sponsor of the November 2019 Epilepsy Blog Relay.* Every person living with epilepsy faces a different journey, but the goal is the same: freedom from seizures. While some patients achieve seizure freedom with their first medication, many more will have to try multiple drugs – oftentimes more than once and at different doses. Switching to a new medication or changing your dose may seem simple but can involve a long process to balance effectiveness with side effects. This balancing act involves the person living with epilepsy, their physician and the support team. There are many reasons it may be necessary to make changes to a treatment regimen. While most people think about effectiveness and tolerability of the medication first, it is also worthwhile to think about how the medication and dosing schedule fit into one’s lifestyle. Daily schedule changes, increased travel for work, changes during adolescence, or even an over-crowded schedule can impact adherence and how well the medication works in your system. These should all be considerations to encourage a successful shift to a new treatment approach. #### What is Dose Mapping The period during which one is building up to the most effective dose of medication is known as dose mapping or the titration period. This can take several weeks as many drugs need to be titrated at weekly intervals. During this process, the number of doctor visits increases as the care team monitors how well the drug is working as well as how side effects are tolerated. The financial and time burdens associated with additional visits and testing can add stress for patients and their families. In addition to more time in the doctor’s office, coming off one medication and starting another can take an emotional toll. It is natural to feel frustrated or fearful once it becomes clear that a treatment regimen isn’t working or needs to change. Equally stressful is adjusting to a new treatment schedule and the related worry that a breakthrough seizure can occur while waiting for the new medication to reach its optimal dose. “When a patient begins a new medication, doctors must take the time to help them adjust to the full dose with minimal side effects. During the time it takes to reach a full dose, the patient is more vulnerable to breakthrough seizures, because the medication is not yet working at full efficacy.” [Dr. Barry Gidal, professor of pharmacy and neurology at the University of Wisconsin-Madison](https://apps.pharmacy.wisc.edu/sopdir/barry_gidal/index.php), explains that, “In order to manage this increased vulnerability, we will often start a new medication on top of the existing therapy. This means we must partner with our patients to ensure that they understand how the new treatment schedule includes the original medication as well as the new therapy.” Juggling multiple medications and treatment schedules can make adhering to a new treatment regimen more difficult, so the more rapid the titration schedule, the easier it is to get into a rhythm that supports adherence. When thinking about dosing, it’s important to remember that not all drugs are the same, and titration periods differ between medications. Some medications may reach a therapeutic dose in four weeks instead of six but require multiple pills a day. It is also possible that a medication with great efficacy has side effects that don’t allow you to live comfortably. These variables must be considered by the care team when starting a new mediation. #### Working as a Team Part of your responsibility in managing epilepsy is to understand how shifting medications needs to fit into a way of life that is realistic for you. If the number of doctor visits associated with a longer titration schedule are difficult in one’s schedule, then talk to your doctor about considering a medication with a more rapid titration schedule or which offers optimum protection from seizures at lower doses. Be sure to help your doctor understand your personal needs as you consider a new medication so that your physician can work *with* you on a treatment plan to fit your lifestyle. These “minor” updates (a new weekly activity, change in diet, a new commute) can be incredibly important information for the doctor to have when making treatment decisions and considering dosing schedules. “Keeping seizure diaries that not only track seizure frequency and severity, but side effects as well, is one the best ways to help physicians identify treatment options that mitigate the risk of breakthrough seizures from the start,” says Dr. Gidal. “It is important for a patient to be his or her own best self-advocate and openly communicate with their health care provider – be that physician, nurse or pharmacist.” To learn how to discuss the best plan to fit your journey to seizure freedom, check out patient and physician resources on [EPILAPSEY.com](http://www.epilapsey.com). ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** About Epilepsy --- ### [Epilepsy Blog Relay: A Mother’s Perspective on Her Evolving Role as Caregiver](https://livingwellwithepilepsy.com/epilepsy-stories/a-mothers-perspective-on-her-evolving-role-as-caregiver.html) **Published:** December 17, 2019 **Author:** Jessica K. Smith **Excerpt:** As a parent of two young adults with epilepsy, Carole understands the challenges that come with being a caregiver for teens with epilepsy. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/12/Carole-HEADSHOT1-225x300.jpg "Carole HEADSHOT(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=21847)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***.*** *This blog post was submitted by [Eisai](https://livingwellwithepilepsy.com/partners/eisai), the Presenting Sponsor of the November 2019 Epilepsy Blog Relay.* #### Carole’s Story As a parent of two young adults with epilepsy, I understand the challenges – both emotional and physical – that come with caring for young people with this complex condition. My daughter began having seizures as a young child and was seizure free for 15 years before being diagnosed with another form of epilepsy in early adulthood. Helping her navigate the medical system from the sidelines, was a very different experience than being the primary caretaker for my son who was diagnosed with epilepsy when he was in high school and still living at home. Still, the roles of parent and caregiver feel inherently connected to me, and I know just how challenging it can be to let go as your children begin to take a leading role in managing their own care. My son and I needed to learn how best to work together to manage this new development while enabling him to live like a teenager. I had to remind my son – who barely took vitamins – to take anti-epileptic medication every day, to get enough sleep, and to avoid anything that could trigger a seizure. But while I was running point, I was aware that soon he would need to learn to handle his epilepsy independent of my day-to-day management. His pending adulthood meant that my son needed to learn how to care for himself, and just as importantly, I needed to learn how to let go. Any mother can tell you that it is a difficult thing to do, but what made it possible was arming myself and my child with the right information and finding the right people to rely on throughout the journey. #### Opening up and Preparing for College When he was first diagnosed, my son was private about his diagnosis. He didn’t want to be different, and, like many teens with epilepsy, was embarrassed by the condition. As caregivers, we see first-hand the frustration, isolation and fear of being treated differently that teenagers with epilepsy face. As his mom, it was heartbreaking, and as his caregiver I knew that those feelings of stigma and isolation would make it harder for him to maintain adherence to his medication. We reached out to the people closest to him: coaches, close friends and teachers, and let them know what was going on, because treatment lapses in recently diagnosed patients are inevitable and we knew that he needed a larger support system to hold him accountable. Even with an expanded support system and the confidence to talk about this condition, I was worried about treatment adherence challenges he would face in college. He would need to consider his medication a major part of his daily routine and maintain adherence while avoiding triggers – without me there to remind him. These are just a few of the things we learned that made the biggest difference in his transition away from home. 1. **Encourage your child to let his/her roommate(s) know about their condition right away.** Take the fear of judgement away immediately. The epilepsy is not going away, and their roommate must know what to do, and who to contact in case of an emergency. 2. **Make clear with your child the importance of routine.** All medications come with different instructions: when to take it, how often, and with which meals. When patients fully understand those details, they can better integrate medication into their day-to-day lives, promoting adherence. Forgetfulness is a major reason for non-adherence and something as easy as a designated medication drawer or keeping medication next to a toothbrush can help. 3. **Take notes!** Encourage your child to document his/her challenges and successes. You can even do the same. I have notes on my phone detailing what my children’s schedules are like and the date/time of any seizures. Sharing this information with doctors can also be essential to optimizing treatment. 4. **Speak with your treatment team**. Ask your doctor, nurse or other healthcare professional about strategies for keeping your treatment on track, including what medication options may be available #### **Transitioning to Adult Epilepsy Care – The Importance of the Waiting Room** When my son’s doctor told me that he would no longer discuss my son’s treatment without him present, it was difficult, but appreciated. Setting that boundary made it clear to my son that he was in control. Though distressing, having to sit in the waiting room turned out to be an important step in the transition of care for me and my children. I trusted that they were asking the right questions and sharing the right information with their doctor because I had used resources and gotten them into the habit of being open and taking notes. #### **Easing the Transition on Yourself** Epilepsy impacts the entire family. While I’m happy to say my kids are now adults, who manage their own medication and live independent lives, transitioning from caretaker to just “mom” was difficult, and I needed to seek support for myself as well. I encourage any parent facing this transition period to attend support groups and take care of yourself. Caregiver burnout is real. Your child has a team to help with their treatment, you deserve one to support you as well. If you are facing a transition away from care because your child is going to college or simply growing up, check out for more resources. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Stories, Nov 19 EBR Posts --- ### [Epilepsy Blog Relay: Reasons for Working with Your Epilepsy Specialist](https://livingwellwithepilepsy.com/epilepsy-stories/reasons-for-working-with-your-epilepsy-specialist.html) **Published:** December 7, 2019 **Author:** Jessica K. Smith **Excerpt:** Regardless of who you’re working with to manage your epilepsy, open and honest communication with your healthcare team is a priority. **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/12/blanca-vazquez-square-300x300.jpg "blanca-vazquez-square – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/reasons-for-working-with-your-epilepsy-specialist.html/attachment/blanca-vazquez-square)This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) This blog post was submitted by [Sunovion Pharmaceuticals Inc.](https://livingwellwithepilepsy.com/partners/sunovion), the Founding Sponsor of the November 2019 Epilepsy Blog Relay. Dr. Blanca Vazquez is a paid consultant of Sunovion Pharmaceuticals, Inc. #### Dr. Blanca Vazquez Managing epilepsy is a full-time job. But you don’t have to do it alone. There are healthcare professionals who have the knowledge and expertise to help make managing your epilepsy easier. Whether you are newly diagnosed or have been living with epilepsy for years, it is always easier when you have a team you can trust in your corner. There are many neurologists who are very good at treating epilepsy. If you’ve found one that is helping you control your epilepsy, stick with them. But, if you’re having breakthrough seizures, experiencing medication side effects, or are dealing with other conditions, such as mood disorders on top of your epilepsy, you may want to consider finding a neurologist who specializes in the treatment of epilepsy. Regardless of who you’re working with to manage your epilepsy, open and honest communication with your healthcare team is a priority. They need to know what is going on in your life so that they can offer you the treatment that will best fit your needs. Everyone wants to be seizure-free with no side effects, but since everyone’s epilepsy affects them differently, that isn’t always possible. That’s why you need to work with a specialist. They can help you find the treatment that works best for you and your circumstances. #### Taking Medication One of the biggest challenges I see in my practice is patients not taking their medication as they’re supposed to. There are a lot of reasons why patients are not compliant with their medication, but I think they come back to a couple important reasons: Their expectations for seizure freedom without any side effects are too high or they aren’t tolerating the medication well. There are ways that epileptologists can help you manage those. We can explain how no medication is without side effects and offer solutions for how to manage them. We can start you off at a lower dose and build your dose up, allowing you to possibly tolerate it better. We can prescribe a medication that is once a day so that it is easier to work into your daily routine. We just need to know more about you, your expectations, and your habits/routines so we can personalize your care to treat your epilepsy. #### A Specialist You Trust At the core of your epilepsy team, you should have a specialist who you trust. Having the right person on your team affects the information you are given, the treatments that are recommended, and the resources that are presented to you. Your epilepsy specialist is the hub for your care, and coordination of care can make the difference in getting treatment that gives you control of your seizures. **Our goal is always seizure freedom because one seizure can be one too many.** © 2019 Sunovion Pharmaceuticals Inc. All rights reserved. 12/19 NPC-APT-US-00014-19 This blog post was submitted by Sunovion Pharmaceuticals Inc., the Founding Sponsor of the November 2019 Epilepsy Blog Relay. --- **NEXT UP:** Be sure to check out the next post tomorrow at . ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Stories, Newly Diagnosed, Nov 19 EBR Posts --- ### [Epilepsy Blog Relay: Leonieke lives with a thick fog until she gets VNS in Belgium](https://livingwellwithepilepsy.com/epilepsy-stories/vns-in-belgium.html) **Published:** December 3, 2019 **Author:** Guest Contributor **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/12/botje-marit-ariel-scaled-e1575382897482-300x289.jpg "botje-marit-ariel – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/botje-marit-ariel-2)This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***.*** #### Leonieke’s Story When I was 9 my dream of joining the navy was crushed. I was told that I’d probably never be able to drive. I was also told if I wanted to have kids I’d need to consult my neuro at least 1 year before. I was not allowed to take a bath, swim alone, bike alone… Basically be alone. According to the doctor 24 years ago, even he didn’t say it, I ended up in a prison. Luckily my mum and stepdad never took all the advice. They were cautious, but let me go to school by myself, on my bike, without a helmet. I’m a Dutch girl after all. #### VNS in Belgium They started me on meds that didn’t work and had too much side effects. They started other meds, other combinations, other doses. Basically they’ve been trying for the last 24 years and here we are, still not seizure free. In 2015 we started the VNS proces. We started all the examinations and in the beginning of 2016 I heard that I was a candidate for the VNS. I didn’t do the surgery though. I wasn’t ready yet. Taking the VNS meant, for me, that there was no pharmaceutical solution left. And I wasn’t ready to give in to that idea yet. Especially since you have no clue about the results. They can be from non-existent to seizure free. My epilepsy has always been fluctuating. Good periods were alternated by lesser periods to serious bad ones. I have had some status seizures and am very grateful that I survived them. However we never know the reason of the fluctuation. The end of 2018 a lesser period occurred. And although the seizures weren’t that bad, the situations were. I scratched my hand on a nail, I fell on a crossroad, during rush hour, right after a bus passed by… That’s when I decided it was time. That’s when I decided I didn’t want to continue like this. I was ready for the VNS. #### The VNS Experience Fast forward to May 17th 2019. The VNS was implanted. Surgery went well, scar in my neck is healing very nicely. The scar on my breast is not, I’m well rounded, and as I was warned by fellow VNS patients, the scar shows a little tearing due to gravity. June 4th, they turned on my VNS. It has been a life changing experience. But really, I’m not kidding. From the first moment I feel more energetic and vivid. And a very nice result for me… I hardly ever have the hiccups anymore. I used to have them very often and they were always loud and very uncomfortable. How about my seizures? I don’t know. I have absence seizures with irregular tonic clonic seizures. My absences are very short so we have to wait till June next year. #### Life today Are all the results of the VNS good? No. Off course I have the known vocal chords problems. But there is something they never warned me for. For 24 years I lived in a bubble of brain fog and seizures. For 24 years I experienced not everything in this world. And now? This world is so full of noise, smell, lights… Wow. And it’s clear I don’t know how to handle it…. yet(?). On top of that, I don’t know how to handle the powerlessness of not knowing how to handle it. So far… it just makes me angry. However when I enter a 4D attraction in Disneyland Paris I did dozens of times before and I smell things I never smelled before and I feel fine when I come out after using the magnet. I forget all the anger and I am so totally happy with my decision. --- **NEXT UP:** Be sure to check out the next post tomorrow at . ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Nov 19 EBR Posts, Treatments --- ### [Epilepsy Blog Relay: Hayley shares how epilepsy has affected her family](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-blog-relay-hayley-shares-how-epilepsy-has-affected-her-family.html) **Published:** November 25, 2019 **Author:** Hayley Jacobs **Excerpt:** According to Hayley, it hurts to acknowledge that having uncontrolled epilepsy has had an impact on her family. Yet she has shared ways epilepsy has had a positive impact on her “team”. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/09/family-pic-300x300.jpg "family-pic – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=21401)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** #### Hayley’s Story My blog started as a way of sharing my epilepsy “journey” with those around me. It was a more detailed way of passing on information about what had been discussed at appointments without having to repeat myself loads of times. I also try and answer questions which people might have that they are embarrassed about asking in person or don’t quite know if they will offend me or not (chances are they won’t!). It is also a place for me to vent my own fears and frustrations and to keep me busy. I also hope it is useful to other people who are part of the epilepsy community (those with epilepsy and friends and families) to help increase understanding and address stigma. This is my second entry for the Epilepsy Blog Relay and the subject I’ve been given this time is [Epilepsy and Families](https://livingwellwithepilepsy.com/family-epilepsy). This isn’t something I’d normally be drawn to writing about because it hurts to acknowledge that having uncontrolled epilepsy has had an impact on my family, but I have chosen to explain ways in which it has had a positive impact on my “team”. #### Excerpt Sometimes when a ship gets wrecked the treasure is buried so deep it’s impossible to believe there can be any, but with enough patience and perseverance something good can come of everything. I’m keeping it simple today and going for the “two stars and a wish” format. This is a primary school concept for marking children’s work whereby everything you mark gets two stars (positive comments) and a wish (something to work on). If you’re struggling with a long term health condition I’d really encourage you to do the same. The stars might not sparkle very often but once you’ve acknowledged what they are you can look out for them. During the next week or month try and be aware of what is happening around you. If you don’t have an immediate family use your extended family or network of friends. Try and find two things which are positive that are a direct result of your condition and notice how they affect that network. Write them down if you need to (yes I know the memory thing is very real). [**READ MORE**](https://fitsandstarts.home.blog/) Please follow the link to my full post at [www.fitsandstarts.co.uk](https://fitsandstarts.home.blog/) . I hope that it helps encourage others who are suffering to do some digging. --- **NEXT UP:** Be sure to check out the next post tomorrow at . ![author avatar](https://secure.gravatar.com/avatar/bb67b1e45d0e80a2c87ad47e6bebcb92c477042f0211c4104141de3fe2b83507?s=300&d=mm&r=g) Hayley Jacobs [See Full Bio](https://livingwellwithepilepsy.com/author/hayleyj101) [ ](https://livingwellwithepilepsy.com/author/hayleyj101) **Categories:** Epilepsy Stories, Nov 19 EBR Posts --- ### [Epilepsy Blog Relay: The reality of seizure rescue medications for adults](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-blog-relay-the-reality-of-seizure-rescue-medications-for-adults.html) **Published:** November 21, 2019 **Author:** Guest Contributor **Excerpt:** Alice's seizures often occur in clusters. She's struggled to find information on other adult's experiences with rescue medications. So she has shared her own experience here. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/10/photo-113-e1574303019633-275x300.jpg "photo-113 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=21563)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** #### Alice’s Story I am a Juilliard-trained clarinetist, on the music faculty at University of San Diego, and a passionate advocate for access to quality music education for all. In 2011, I gave up waiting for my epilepsy to be controlled in order to have my dream orchestral career and focused instead on what I could do even if my seizures never got any better, which was to teach and perform a few times a year, and have a pretty fulfilling creative and personal life. Since then, I have been performing and teaching more than ever; my seizure control has also somewhat improved thanks to a combination of palliative surgery, medication adjustments, and lifestyle changes. Grieving the loss of my dream has been difficult, but I have discovered and re-imagined a lot in the process. #### Seizure clusters My seizures often occur in clusters, which are seizures that generally occur closer together than “normal.” For me, this means two or three seizures in a week, and in particular, up to many seizures in a day. Then I might go weeks and weeks with no seizures, or even a month or two. One seizure, for me, is almost never just one seizure. An aura is almost never just an aura, but the sign that more is to come. There’s a lot out there about rescue treatments for children, and how to administer them to a child, but I have never read anything about an adult’s experience with them. I often wonder why this is, because I can’t be the only adult out there on rescue medication for seizures! #### Seizure rescue medication Recovery after treatment for status epilepticus or a cluster seizure event is usually very a difficult, months-long endeavor. Becoming more comfortable with the rescue treatments for my seizures and preparing those around me to respond to a seizure has helped to minimize these events. My current rescue medication is buccal midazolam. Here is my personal experience with other available rescue medications: #### Ativan When I was away at music conservatory and living in the dormitories, it was becoming really obvious that Ativan tablets were not working out as a rescue medication for me. First of all, I am so confused after a seizure that I usually either need someone to simply give me the pill, or I need a lot of prompting. . . if I was lucky enough to have someone around who knew me. Many times what happened was that I had a second seizure, and then 911 was called. During one of the seizures, it was reported that I stopped breathing. My school got very alarmed at this kind of medical instability (it is normal to stop breathing during a seizure) and started throwing out very stressful suggestions such as expulsion, should I not get things under control. #### Versed Intranasal So my neurologist suggested that we could try something new. I was prescribed Versed to be taken intra-nasally, using a Mucosal Atomization Device and an adapted syringe, and IV solution. I pre-loaded these syringes with medication and carried them with me everywhere in prescription-labeled pencil boxes for the next several years. My seizures became a weird kind of normal at school in New York. Anyways, it worked great, until one day it didn’t, and I had a seizure cluster that put me into a week-long coma years later in California. #### Diastat I was discharged from that hospitalization on new medications and with Diastat, a rectal gel version of Valium. Yes, rectal. Let me just say now, I am glad that I am really out of it when I am post-ictal because I don’t really remember much about Diastat, except that it worked. My family are the only ones who have dealt with Diastat. #### Complications with rescue medication In 2009, I was ready to finish my graduate degree, I knew that I could not do Diastat in a university environment. I knew that I would need to ask people I did not know that well to help me with rescue medications. For a while I used Versed intranasal again. Then Versed was on a shortage or my insurance wasn’t covering it, so I tried Klonopin dissolving wafers buccally (or under the tongue). These worked fairly well, except that they were difficult to transport and handle because they are so fragile. Sometimes people didn’t want to help me with my meds, and it was more difficult to open a bottle and unwrap a foil packet after a seizure/during an aura than push a syringe. There was also the time, early on, that I was dispensed regular Klonopin instead of fast dissolving, and I ended up in the hospital for two days because of a seizure cluster. #### Rational Polytherapy In 2015, I had VNS surgery. Now, when I have an aura or a seizure, we can use the VNS magnet as an additional part of my rescue therapy. It seems to help. There have been seizures that didn’t generalize, and there have been times that I have had auras that I thought for sure would become seizures that just didn’t. As of now, I am back to using Versed, or midazolam again as a rescue medication, this time, buccally, in the cheek/under the tongue. So far we have only had to use it once, and it worked out really well. No seizures or auras after. #### The reality of rescue medications When I talk about rescue medications, I do use “we,” often, instead of “I,” because it feels like a team effort: once the auras start or once a seizure event starts, I need help wherever I can get it from. In the past, this has been from family, friends, teachers, colleagues, strangers, and now even my own students are my helpers. By having my rescue medications always with me, and and showing others how and when to use them to help me, I empower myself in living an independent life. #### Read More Alice is a Juilliard-trained clarinetist, on the music faculty at University of San Diego. She is also the author of the blog, Seizing Joy which can be found at --- **NEXT UP:** Be sure to check out the next post tomorrow at . ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Nov 19 EBR Posts, Treatments --- ### [Epilepsy Blog Relay: A letter to young Whit](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-blog-relay-a-letter-to-young-whit.html) **Published:** November 14, 2019 **Author:** Whitney Petit **Excerpt:** Sunovion is proud to share the story of #MyEpilepsyHero Whitney Petit, who offers a window into the ups and downs she experienced while growing up with epilepsy.  **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/11/IMG_0450-e1573698225336.jpg "IMG_0450 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/img_0450)This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** This blog post was submitted by [Sunovion Pharmaceuticals Inc.](https://livingwellwithepilepsy.com/partners/sunovion), the Founding Sponsor of the November 2019 Epilepsy Blog Relay. #### Whitney’s Story Sunovion is proud to feature [\#MyEpilepsyHero](https://livingwellwithepilepsy.com/2019/epilepsy-blog-relay/jun-19-ebr-posts/my-epilepsy-hero.html) Whitney Petit, author of this post, who offers a window into the ups and downs she experienced while living a life with epilepsy at a young age. Whether you’re living with epilepsy or a parent to a loved one, we hope these letters give a glimpse into the feelings and experiences common for young ones and the support needed to manage childhood and teenage years with epilepsy. #### Dear Young Whit, I write this letter to you as I enter my favorite time of year. Fall. I love the fall season because it marks the time, whereas an adult, we find our purpose. That thing you’re dealing with now, the constant headaches, the involuntary body movements, the blank stares, the many doctor appointments, those things will be the things that empower us to fight for others in the future. Just stay with me throughout this letter as I reflect on what got us to this point. I’ll hope to encourage you never to give up. In the 1st grade, you will have to overcome some obstacles. You will experience absence seizures during class times. Teachers won’t understand or even try to understand. Their lack of knowledge will lead them to “correct” you by hitting you with fat pencils on your knuckles. Understand that it is NOT your fault. You are doing nothing wrong. You may feel as if you’re broken or less than. The seizures were setting you apart from the other kids at an early age. Many times, mom would need to remind the teachers that you are living with a neurological condition that you have no control over. Even in those situations, don’t forget to smile. Hold your head up and continue to be that fantastic kid you are. Remind yourself to unclench those fists and take every situation as it comes. There will be many medications. Work with your epilepsy specialist and take them. I know it’s annoying, but they will help. Treat overnight trips to the EEG labs as an adventure. It will all be worth it in the long run. You will become a dancer and be amazing at it. During the journey of dance, the seizures will seemingly go dormant. You will notice they will happen less and less. You will find freedom but still, operate with caution. Just never let the fact that it can happen at any moment stop you. Whitney, know that it is okay to tell your friends. Let them know that you are living with epilepsy. Share with them what that means and that you are still the same person that they have grown to know and love. To get the world to understand that anyone with a brain can have a seizure, we must start sharing our story with our peers. By the time you reach middle school, you’ll be interested in cheerleading. In high school, you will take a step back from dance and cheer but find a love for writing and journalism. Hold on to that; it will come in handy in the future. Don’t ever give up on yourself. You are a warrior, a fighter, a champion. If I leave you with anything, I’ll leave you with this. The best relationship you will have is the one with Mom. She will always be your protector, your fighter, the one who stands up for you through all the storms, the seizures, the recoveries, the doctor’s appointments, the failures, and the triumphs. She will be your haven. Even when you get upset with her for not getting your way, know that it’s always in your best interest. No matter how far you travel, no matter where life takes you or when the seizures come and go, you can always find a home in her. Remember to learn to take care of YOU before you try to save the world. I promise this will allow you to be a greater champion in the long run! Self-care is the best care, girl. -Whit © 2019 Sunovion Pharmaceuticals Inc. All rights reserved. 10/19 NPC-APT-US-00015-19 This blog post was submitted by Sunovion Pharmaceuticals Inc., the Founding Sponsor of the November 2019 Epilepsy Blog Relay. --- **NEXT UP:** Be sure to check out the next post tomorrow at . ![author avatar](https://secure.gravatar.com/avatar/13683cea3a9c0d5cc5a1f85fe87c891b4e8a666374942e9f00d375220d9131da?s=300&d=mm&r=g) Whitney Petit [See Full Bio](https://livingwellwithepilepsy.com/author/cfepilepsy) [ ](https://livingwellwithepilepsy.com/author/cfepilepsy) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://www.twitter.com/cfepilepsy) **Categories:** Epilepsy Stories, Nov 19 EBR Posts --- ### [Epilepsy Blog Relay: When does faith healing become medical neglect?](https://livingwellwithepilepsy.com/epilepsy-stories/when-does-faith-healing-become-medical-neglect.html) **Published:** November 13, 2019 **Author:** Elaine Reeves **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/09/reevesphotoforid-e1569096347577-300x300.jpg "reevesphotoforid2 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=21397)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** #### Elaine on Faith Healing Faith healing and demon possession are not medical terms but they are used to describe religious belief systems that give the believers in the system a sense of security when they experience uncertainty about a family member who has epilepsy. Sometimes in the network of family and friends around a person with epilepsy the question of “what does it mean?” is more compelling than “what is the best treatment?” ***“Non-scientific thinking is often used to interpret the nature of epilepsy as a meaning experience not a medical condition.” Eadie, Mervyn J., and P. F. Bladin. A Disease Once Sacred: a History of the Medical Understanding of Epilepsy. John Libbey, 2001.*** #### Existential or Physical What does it mean? could be a question about a relationship with God: does God still love us? Are we being punished? Did someone sin? From a religious point of view, the real problem is existential, not physical. Existentially, as soon as the sin is resolved, the right person repents, God withdraws his punishment, then the physical problem will disappear. Existential questions like these are very subjective and the answers are likely to be very subjective also. While it is true that the emotional needs of the network of family and friends around a person with epilepsy are satisfied by the existential religious meaning and explanation about epilepsy, the actual outcome for the person with epilepsy is medical neglect. The real question to address is about the health needs of the person with the epilepsy, not the existential concerns of the family and friends in the network around the person with epilepsy. #### Demons or Seizures? Why say that a person with epilepsy is demon possessed? We are supposed to love, but at the same time, a person with epilepsy is often viewed as a threat because of being different. The difference and the sense of threat posed by the difference leads to the perceived need by Christian fundamentalists to “cast out demons.” The exorcism, then, can be perceived by Christian fundamentalists as healing, as an act of love, and shunning all in one action. The exorcism allows the Christian to meet the religious requirement to love while at the same time keeping enough distance to meet the human need for a sense of safety and security in the face of uncertainty and mystery and the perceived threat to safety. Identifying a person with epilepsy as being “possessed by demons” is a form of stigmatization in the guise of religious piety. Shunning and stigmatization are acts of fear, not love. #### Self-care when it matters most No matter how many other people fail to love us, we cannot fail to love ourselves. If we remain committed to ourselves, we are loved. People with epilepsy have fears. People around the person with epilepsy have fears. We can respond to our own fears and the fears of others by loving ourselves and taking care of ourselves. As we love ourselves, our fears begin to dissolve. If we let go of a little bit of our own fear the people around us might let go of a little bit of their fear also. We can be the people to start healing ourselves. I can be the person to start the healing freedom for myself and so can you. #### Beloved Name All day I inhale the healing fragrance of your name. How many names does the Beloved have? 1, 2, 3, 4 A, B, C, D Earth, wind, fire, water, Winter, spring, summer, fall North, south, east, west Sun, moon, stars, sky Wednesday, Thursday, Friday, Saturday Mother, father, sister, brother Birth, life, death, resurrection How many names does the Beloved have? All day I inhale the healing fragrance of your name. *Elaine M. Reeves* --- **NEXT UP:** Be sure to check out the next post tomorrow at . ![author avatar](https://secure.gravatar.com/avatar/5d4261955d4ceff56cc67b1a40b7c2203bf696f43b3fd37045328526cd56ff6e?s=300&d=mm&r=g) Elaine Reeves [See Full Bio](https://livingwellwithepilepsy.com/author/ereeves) [ ](https://livingwellwithepilepsy.com/author/ereeves) **Categories:** Epilepsy Stories, Nov 19 EBR Posts **Tags:** faith healing --- ### [Epilepsy Blog Relay: Elaine uses poetry to cope with adversity and a life with TLE](https://livingwellwithepilepsy.com/epilepsy-stories/guest-posts/poetry-to-cope-with-adversity-and-a-life-with-tle.html) **Published:** June 27, 2018 **Author:** Elaine Reeves **Content:** **This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from June 1 to June 30, 2018. Follow along!** #### Elaine’s Story I was diagnosed with epilepsy at age four. At that time, early 1960s, one of the few medications available for epilepsy was phenobarbital. Concerned about negative side effects for a growing four year old, my grandmother suggested that I be taken to church and prayed over for healing. Being a family of great faith, my mother and father truly believed in a miracle for me, so as I grew from being a child to an adult, nothing was said to me about ever having had [epilepsy](https://livingwellwithepilepsy.com/start-here). #### Coping with adversity As an adult I could sense that something was not right but I could never put my finger on exactly what it could be. I spent most of my free evenings and weekends in libraries reading, trying to find something in a book that I could recognize as the same as the experience that I was having. Every day I would get up and read something, then go to my low wage job that I knew would not pay the bills. And I felt alone, too, very isolated, but I felt too confused and anxious to finish my education or to socialize. Sometimes I had severe migraine headaches and depression, but at other times feelings of euphoria and inspiration to [write poetry](https://livingwellwithepilepsy.com/2010/epilepsy-news/did-emily-dickinson-have-epilepsy.html). #### Getting an epilepsy diagnosis Finally my reading led me realize that I might have epilepsy; I decided to see a doctor[,](https://livingwellwithepilepsy.com/diagnosis) just to be sure one way or another. I made this decision on my own without consulting my family. Results from an EEG came back positive for [temporal lobe epilepsy](https://livingwellwithepilepsy.com/2018/aboutepilepsy/temporal-lobe-epilepsy/deja-vu-and-temporal-lobe-epilepsy.html) with complex partial seizures. I was thirty-nine at the time of [the diagnosis](https://livingwellwithepilepsy.com/diagnosis). When I shared the results with my mother and father they acknowledged that I had been diagnosed with epilepsy at age four, but they continued to believe that prayer and faith are enough. For them, whatever epilepsy I had currently been diagnosed with at age thirty-nine was a new and different epilepsy than the one I had at age four. As a result, I have been largely estranged from my family, as I do not agree that faith healing at any age is the cure for epilepsy. #### Finding beauty in my new life In the months immediately following my diagnosis, it seemed to me that I had lost half of my life to epilepsy. I wondered how my life might have been different if my family had responded differently when I was four. Things are better for me now. I work as a librarian and can pay most of my bills. But the loss is real and the clock cannot be turned back. Poetry is a way to cope with some of the difficult feelings. Here is one of my favorite poems, Desert Rose. I like it because writing it helps me remember that living with epilepsy can feel like a very empty experience sometimes, and very lonely too, but even in the empty moments, beauty can blossom. I hope that the next time you are feeling empty or alone, the words of my poem will help you see beauty in [your own experience](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/mar-18-ebr-posts/epilepsy-blog-relay-epilepsy-isnt-my-only-story.html) of living with epilepsy: ***Desert Rose*** *Ego deconstruction is the alchemy of* *Flesh dissolving in the bleak desert* *Lonely and abandoned.* *Exposed bones* *Drained of life by the sun* *Crack in protest* *Then falling break, exhausted.* *One by one bones settle* *Into the solitary silence* *Surrendering to completion* *Desert rose blooms.* *by E.M. Reeves* #### Are you living with Temporal Lobe Epilepsy or TLE? [Share your story](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) or comment on Elaine’s experience. --- **NEXT UP:** Be sure to check out the next post by Audra at . **TWITTER CHAT:** Save the date for the #LivingWellChat on June 30 at 7PM ET. [![epilepsy blog relay](https://livingwellwithepilepsy.com/wp-content/uploads/2018/05/june-2018-social-EBR1-150x150.png "june 2018 social EBR(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-participants/attachment/june-2018-social-ebr1)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our [generous sponsors and partners](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-sponsors-and-partners)! [Participate as a November Blogger ](http://bit.ly/Nov18EBRForm) [Become a November Sponsor ](http://bit.ly/1819EBRMk) ![author avatar](https://secure.gravatar.com/avatar/5d4261955d4ceff56cc67b1a40b7c2203bf696f43b3fd37045328526cd56ff6e?s=300&d=mm&r=g) Elaine Reeves [See Full Bio](https://livingwellwithepilepsy.com/author/ereeves) [ ](https://livingwellwithepilepsy.com/author/ereeves) **Categories:** Guest Posts, Jun 18 EBR Posts, Side Effects, Temporal Lobe Epilepsy **Tags:** complex partial, poetry, temporal lobe epilepsy, TLE --- ### [Epilepsy Blog Relay: Strategies for Improving Treatment Adherence in Epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/strategies-for-improving-treatment-adherence-in-epilepsy.html) **Published:** November 12, 2019 **Author:** Jessica K. Smith **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/11/epilapsey-img.png "epilapsey img – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=21644)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** For people with epilepsy, uncontrolled seizures (seizures that continue even while you’re on medication)1 can be a source of constant anxiety – wondering when and where one may happen. Busy schedules, side effects and rigid medication schedules can make keeping seizures under control extremely challenging.2-4 Poor seizure control can lead to severe consequences, such as shortened lifespan, a higher risk of fractures and head injuries and ER visits, and the risk of emotional and cognitive difficulties in both adults and children.5-7, 8,9 Setting goals is a key step in taking charge of your epilepsy care.2,3 Susan Woolner, CPXP, is a Neuroscience Patient and Caregiver Support and Community Manager at Mercy Health Hauenstein Neurosciences based in Grand Rapids, Michigan. She works with adult patients in support groups for those living with epilepsy as well as other conditions. “Seizure freedom is more than just freedom from seizures,” she says. “It’s freedom from the stigma, shame and blame that come with epilepsy.” #### **The Quest for Seizure Freedom** Although seizures can occur for a number of reasons, a significant number of people reported experiencing seizures—including convulsive seizures—after missing a dose.10,11 According to one survey, nearly 50% of people with epilepsy report having a seizure following a missed dose.11 In one survey, two thirds of patients missed doses due to “forgetfulness,” and 37% of patients with epilepsy missed a dose once a month on average.2 For many, the goal of living seizure free can feel impossible. But it doesn’t have to be. “It’s critical that patients take their medication exactly as directed, at the right times, and at the right doses, otherwise you increase the risk of having a seizure,” said Dr. James Wheless, Professor and Chief of Pediatric Neurology, University of Tennessee Health Science Center.2 “Though treatment lapses are a part of life with this disease, as physicians, we should be doing all we can to make treatment regimens as simple as possible, which could mean fewer daily doses, fewer pills, once-daily dosing and giving patients the tools they need to aim for seizure freedom.”12 #### **Treatment Options and Reducing Missed Doses** When doses are missed or the medicine isn’t taken as prescribed, the level of medicine in the body decreases. Studies have shown that certain medications that are long acting may reduce the impact of missed doses.13 Different treatment options may help minimize the risk of seizures. “Medications that are designed for sustained release can stay in the body longer, which may help patients better manage their treatment regimen,” said Dr. Wheless. 13 People with epilepsy and their caregivers who struggle with uncontrolled seizures and have a hard time taking treatment as prescribed should ask their healthcare provider about strategies for keeping their treatment on track. These may include10,14,15: - Devise a comprehensive, realistic plan of action for improving adherence - Develop reminders to help increase adherence - Adjust treatment regimen to your daily lifestyle - Consider medications that offer once-daily dosing in the form preferred and are effective at treating convulsive seizures. To learn more about the importance and possibility of preventing breakthrough seizures, visit . #### REFERENCES 1. Bonnett LJ, Powell GA, Smith CT, Marson AG. Breakthrough seizures—further analysis of the standard versus new antiepileptic drugs (SANAD) study. *PLoS ONE*. 2017;(12): e0190035. 2. Paschal AM, et al. Factors associated with medication adherence in patients with epilepsy and recommendations for improvement. *Epilepsy Behav*. 2014;31:346-350. 3. O’Rourke G, O’Brien JJ. Identifying the barriers to antiepileptic drug adherence among adults with epilepsy. *Seizure*. 2017;45:160-168. 4. Epilepsy Foundation. Noncompliance. . Accessed May 28, 2019. 5. Devinsky O, Hesdorffer DC, Thurman DJ, et al. Sudden unexpected death in epilepsy: epidemiology, mechanisms, and prevention. *Lancet Neurol*. 2016;15(10):1075-1088. 6. Friedman DE, et al. Recurrent seizure-related injuries in people with epilepsy at a tertiary epilepsy center: A 2-year longitudinal study. *Epilepsy Behav*. 2010;19(3):400-404. 7. Divino V, Petrilla AA, Bollu V, et al. Clinical and economic burden of breakthrough seizures. *Epilepsy Behav*. 2015;51:40-47. 8. Manjunath R, Paradis PE, Parise H, et al. Burden of uncontrolled epilepsy in patients requiring an emergency room visit or hospitalization. *Neurology*. 2012;79:1908-1916. 9. Thompson PJ, Duncan JS. Cognitive decline in severe epilepsy. *Epilepsia*. 2005;46(11):1780-1787. 10. Hovinga CA, Asato MR, Manjunath R, et al. Association of non-adherence to antiepileptic drugs and seizures, quality of life, and productivity: Survey of patients with epilepsy and physicians. *Epilepsy Behav*. 2008;13(2):316-322. 11. Cramer JA, et al. The relationship between poor medication compliance and seizures. *Epilepsy Behav*. 2002;3(4):338-342. 12. Eatock J, Baker GA. Managing patient adherence and quality of life in epilepsy. *Neuropsychiatr Dis Treat*. 2007;3(1):117-131. 13. Wheless JW, Phelps SJ. A clinician’s guide to oral extended-release drug delivery systems in epilepsy. *J Pediatr Pharmacol Ther*. 2018;23(4):227-292. 14. Osterberg L, Blaschke T. Adherence to medication. *N Engl J Med*. 2005;353(5):487-497. 15. Medic G, et al. Dosing frequency and adherence in chronic psychiatric disease: systematic review and meta-analysis. *Neuropsychiatr Dis Treat*. 2013;9:119-131. --- **NEXT UP:** Be sure to check out the next post tomorrow at . ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Stories, Nov 19 EBR Posts --- ### [Epilepsy Blog Relay: Weight Loss Surgery for the Epileptic](https://livingwellwithepilepsy.com/aboutepilepsy/seizure-types-syndromes/autism-and-epilepsy/weight-loss-surgery-for-the-epileptic.html) **Published:** November 10, 2019 **Author:** Audra Sisak **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/06/17012227-2E2F-4271-ACFF-CF5FACD0EE1E-1-e1561912031226-291x300.jpeg "17012227-2E2F-4271-ACFF-CF5FACD0EE1E-1 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/um_user_photos/us-and-our-animals-2/attachment/17012227-2e2f-4271-acff-cf5facd0ee1e-1)This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** #### Audra’s Story Have you ever wondered what it’s like to live as an [autistic adult with epilepsy](https://livingwellwithepilepsy.com/category/autism-and-epilepsy)? Having a child who is [autistic with epilepsy](https://livingwellwithepilepsy.com/category/autism-and-epilepsy) is a challenge as well! I am Autistic Audra! I am 38 years old with a son who is also autistic with mental health issues and other disabilities like me. The other thing we have in common? We both have epilepsy. Our journey comes with ups and downs, but we are committed together as a family supported with love. #### Excerpt The diagnosis for my epilepsy came in my thirties just after my autism diagnosis. I had spent my whole life suffering from symptoms of repeated seizures. It exhausted my body along with my mind and spirit. The bittersweet relief of the diagnosis meant treatment, a lifelong disability, and knowing I wasn’t crazy. Complex partial focal seizures with secondary generalized seizures was the mouthful describing the types of seizures I experience daily. The medications were helping to decrease the number of seizures, but I was still experiencing at least 50+ seizures a year. This is not an acceptable standard anymore since the number of seizures increases damage to the brain or sudden unexpected death (SUDEP). We needed a different plan for me to get healthy. **[READ MORE](https://ourlifewithautismsite.wordpress.com/2019/11/04/weight-loss-surgery-for-the-epileptic/)** --- **NEXT UP:** Be sure to check out the next post tomorrow at . ![author avatar](https://secure.gravatar.com/avatar/b21a0aa498334f5594b605bcb69144d40cce7b2037684d4b246b1590d7b07d35?s=300&d=mm&r=g) Audra Sisak My name is Audra (Momma Employee) and I have a son The Boss. We are both autistic and have epilepsy! We are both trying to navigate this complex world, together. He runs my schedule and we experience love and life as one family. Our journey comes with ups and downs, but it’s our lives. Welcome to our crazy, funny, weird, socially awkward, introverted, anxiety-ridden, happy, joyful page!We are both supportive of neurodiversity! Momma Employee- QASP, CAS, BCCS, Freelance Writer, Advocate. I love working with my community! I support SCERTS model, DLT model, and therapy to include CBT/ACT. [See Full Bio](https://livingwellwithepilepsy.com/author/audrasisak) [ ](https://livingwellwithepilepsy.com/author/audrasisak) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/2015hlwa/) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://2015hlwa1) **Categories:** Autism and Epilepsy, Nov 19 EBR Posts --- ### [Epilepsy Blog Relay: Epilepsy and Hyperawareness in Northern California](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-blog-relay-epilepsy-and-hyperawareness-in-northern-california.html) **Published:** November 7, 2019 **Author:** Guest Contributor **Excerpt:** This sensory shift to hyperawareness and attendant cause-and-effect inventory is a familiar yet unwelcome situation for many living with epilepsy, no matter how far out we are from our initial diagnosis or how well-controlled our seizures. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/10/epilepsy-300x267.jpg "epilepsy – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=21462)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** #### Michelle’s Story Yesterday morning I felt the floor move, and instantly I was overcome with dread and uncertainty. In a fraction of a second multiple questions raced through my mind. Is this an aura? Or too much caffeine? Did I remember to take my levetiracetam? Do I rest on the floor now to minimize injury? Will a tonic-clonic event frighten my young daughter dancing in the next room? Did I stay up too late last night? What happens at work Monday when I can’t present due to a lacerated tongue? This sensory shift to hyperawareness and attendant cause-and-effect inventory is a familiar yet unwelcome situation for many living with epilepsy, no matter how far out we are from our initial diagnosis or how well-controlled our seizures. #### Hyperawareness in a time of epilepsy Sometimes the culprit of unsteadiness simply is a wobbly chair or, in my case here in Northern California, an earthquake with a magnitude of 3.9 several miles out in the Pacific Ocean. Yet similar to earthquake preparedness with emergency supplies (including extra antiepileptic medications), neighborhood support protocols, and family drills, an unanticipated event can happen that renders the best plans only marginally effective. Tectonic plates massively shift during rush hour, synapses misfire during unexpected strobe effects during a performance, or our metabolism stealthily changes just enough to cross the threshold into a need for revised medication management — and we find ourselves again vulnerable to forces we can only try our best to control. We grieve, analyze and recover, and then customize our lives accordingly. Sometimes the grief lingers, and sometimes I find the life customization process involves more engineering and specialists than the time before. #### Conflicting states of hope and risk In the San Francisco Bay Area, most live in constant and conflicting states of hope, risk minimization, and low-grade awareness of sudden, potentially harmful forces that resonates as a person living well (most of the time) with epilepsy. Safety and well-being are at the heart of many decisions yet we don’t regularly focus on the underlying conditions; instead, we give respect to the fissures, then we acknowledge the risks and prepare in earnest with neighbors and experts as best as we are able. “If the ground shakes,” most in the Bay Area think “then, earthquake” — though I suspect a few of us first think “then, seizure.” There is an immeasurable comfort knowing that unusual algorithm is shared, and believe that connecting virtually with others living with epilepsy – especially during the times of reconfiguration – gives us the expansive neighborhood support response when the grounds inevitably shift within. With a milestone birthday around the corner, I am inspired to enter the new year meeting, supporting, and connecting with residents living in our virtual ‘hood. --- **NEXT UP:** Be sure to check out the next post tomorrow at . ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Nov 19 EBR Posts --- ### [Epilepsy Blog Relay: 6 Tips for Combating Stress While Living With Epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/6-tips-for-combating-stress-while-living-with-epilepsy.html) **Published:** November 6, 2019 **Author:** Heidi Shafer **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/09/unnamed-150x150.jpg "unnamed – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/unnamed-4)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** Stress is a normal part of life for everyone. But, a stressful situation can turn life upside down for a person with epilepsy. There are a few tips for combating stress while living with epilepsy. These tips can help you manage stressful situations in your life. There are different types of stress: emotional, physical and mental stress. During the happiest times of my life I have encountered stress that brought on seizures. For example, the holidays have always been stressful for me. Making the Christmas dinner always made me tired and being tired is a major seizure trigger for me. So I’ve found a few ways to manage the stress during the ups and the downs. If you’re a person who tends to worry (like I am) over little things, that can also bring on seizures. Thankfully I’ve learned not to worry like I did in the past. So what do we do in these situations? Well, I have learned a few tips that have helped me and if you are having problems with stress maybe these tips will help you. #### Tips for Combating Stress 1. Pace yourself. Don’t try to do everything at once. 2. Ask for help during the holidays. Try planning a potluck Christmas dinner. You might be surprised how many people want to contribute a dish to the meal. Or you could consider going out to dinner. Alternatively, just have the family over for dessert instead of a big meal. 3. Learn relaxation techniques. Meditation helps me. 4. Have a good sleep schedule. (this one is important!) Waking up and going to bed at or close to the same time everyday helps your body recover. If you suffer from insomnia (which is common in people with epilepsy) contact your doctor for help. I suffer from insomnia and the treatment and advice from my doctor helped me. 5. See a therapist. Don’t be afraid to see a therapist if you find that you are overwhelmed with dealing with your epilepsy or other life situation. Dealing with epilepsy can cause depression and sometimes professional help is what we need. 6. Have a annual check up with your general practitioner. Stress can cause health problems that we may not know we have. High blood pressure is just one of them. Your doctor may come across something during your exam. These are just a few tips that have helped me. It’s hard to deal with any type of stress when you have epilepsy, but there is hope. There is always hope. --- **NEXT UP:** Be sure to check out the next post tomorrow at . ![author avatar](https://secure.gravatar.com/avatar/a94bb9ed5f470e9a7aa7b0c07d6d92c7829cfd9043f06de1999cd7e2ed1d0882?s=300&d=mm&r=g) Heidi Shafer I have been living with uncontrolled seizures for 40 yrs. I am the mother of 2 wonderful boys and married to a wonderful husband. I am the administrator of the Epilepsy Education and Support Facebook and twitter page. [See Full Bio](https://livingwellwithepilepsy.com/author/heidishafer123) [ ](https://livingwellwithepilepsy.com/author/heidishafer123) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/Epilepsy-Education-and-Support-555528831203718/) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://twitter.com/EpilepsyEES) **Categories:** Epilepsy Stories, Nov 19 EBR Posts **Tags:** stress, tips --- ### [Epilepsy Blog Relay: Rachel’s EMU visit is the antidote to the social media highlight reel](https://livingwellwithepilepsy.com/epilepsy-stories/rachels-emu-is-the-antidote-to-the-social-media-highlight-reel.html) **Published:** November 5, 2019 **Author:** Rachel Ehrhardt **Excerpt:** We live in a society where we only see our friends and families positive highlight reel on social media. But Rachel found her visit to the EMU was the antidote. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/10/220866fc-9a91-4930-afc0-180894d2e305-e1571682518145-274x300.jpeg "220866fc-9a91-4930-afc0-180894d2e305 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=21482)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** We live in a society where we only see our friends and families positive highlight reel on social media. You never see someone expose the hard and bad parts. I started writing about my epilepsy journey 5 years ago on this platform to show the world with long term illness that they are not alone. I needed to remind myself of this many times while writing this article. #### Resisting the test In February, I went into St. Luke’s Hospital in the medical center of Houston for what is known as an EMU (The Epilepsy Monitoring Unit). My doctor had been begging me to have this done for what seemed like years and I always said no. She finally said that she wouldn’t treat me any longer if I didn’t come in for this test. My whole family had seen this doctor for almost 10 years and is world renowned so she had to have a reason. I couldn’t tell if I just thought this wasn’t that big of a deal, or if I didn’t want to rock the boat. Most epilepsy patients can agree with me when I say, if you are seizure free you don’t want to change ANYTHING. I had hit FIVE YEARS seizure free. Why in the world would I test my fate. #### What is an EMU The Epilepsy Monitoring Unit (EMU) is usually a small number of beds located in an academic medical center’s neurological floor. It’s main purpose is to evaluate, diagnose, and find a treatment plan for epilepsy patients. One of the major reasons this study was created is because every epilepsy patient is very different, their seizures are different, the causes are different, and the treatment plans should also be unique as well to fit the patient. A patient is usually admitted to the hospital for 5-7 days. They are monitored by [EEG](https://livingwellwithepilepsy.com/2015/aboutus-lwwe/emilys-perspective/emilys-perspective-help-child-eeg.html), EKG, and video monitoring 24-hours a day to assess body and brain waves that could cause a seizure. The ultimate goal is to see a patient have a seizure to come up with the best reason why and how it happens for each patient. #### The Process The doctors called us the week before and instructed me to not take any of my epilepsy medications, birth control, and any other (un)prescribed meds 48 hours before being admitted to the hospital. One of the main ways you can see changes in brain waves or seizure activity is my taking away medications that you have been on long-term. The seizure activity is the goal in this case. We arrived at St. Luke’s at 7am on February 18th. We went through the regular in patient admission process. I was then wheeled up to the 22nd floor of the hospital. I can remember standing in the room looking around and realizing this was going to be a tough one. I cried with my husband and the process started. #### PRO TIP 1: bring comfy non constrictive , warm pants and tops that can be easily unbuttoned. The nurse came in first to get me settled in and introduce me to the major rules of the floor. You will not be allowed to get up and go to the bathroom alone, you cannot take unauthorized medications, and you must sleep on the assigned schedule. The next person to come in was the lady to place the EKG machine to monitor my heart throughout the time I was there. I didn’t realize this before then that one of the first signs that they can see of a problem is a raised heart rate and blood pressure. Sometimes they never see full blown seizure activity just the change in heart rate. #### PRO TIP 2: You cannot wear underwire bras. I would encourage you to find the comfiest sports bra possible. The next to come in was the EEG department. This was a a part that I wasn’t prepared for. I have had MANY different EEG’s in my life and this one was very different. The tech started out by measuring my head and spacing out the distances between the leads for optimum results. Then he got out the very smelly glue to place the leads firmly into the head. This process probably took about 2-3(!) hours by itself. They would get part of the process done and then need to test them to make sure they were correct before moving on. The next process was the iv. Again, I’ve had quite a few of these in my day and this was the hardest. It took 5(!) nurses and 4 blown veins later for them to insert the iv. My husband will attest to this, I have a really high pain tolerance. This part was the most painful. #### PRO TIP 3: Bring the comfiest clothes you can find. Remember that you will be wearing them nonstop for 5 days. Next came in the first round of fellows (FYI- you may want to get a canned answer of your medical history ready. You are going to repeat it quite a bit the next few days. ) They asked for medical history, family history, seizure history, medication history of what we’ve tried in the past, how I feel before during and after a seizure, and why our physician thought this would be a good idea. At this point all I wanted to do was put the covers over my head and disappear. We were just getting started. Finally the main physician on call came in to go through the history once more and the night time plan for the day. Your sleep schedule, food limitations, and expectations are given at this time twice per day. For our first evening stay we would be awake until 5:00am and then sleep until the fellows came in at 7:30. The food schedule would be normal. #### PRO TIP 4:if you have someone staying with you make sure they are there to hear this portion. The night time came, hubby went to my favorite Chinese restaurant for wonton soup. I had no idea how long that night would be. People kept on telling me before I was to go in that I needed to sleep as much as possible. I didn’t heed that warning. I did remember how much I loved Grey’s Anatomy though. I think I watch 3 seasons that night. Once an hour the nurse would come in to make sure I was awake and started conversations so I would stay awake. Sometimes they would bring popsicles. I snacked on my favorite candies and then it got harder and harder to stay awake. I hit 4 am and literally stared at the clock for 45 minutes. We FINALLY hit 5:00am. The said she walked in I was in a ball with a bag of sour patch kids and wiped out. She put a blanket over me and I had one of the hardest night’s sleep I had had in a very long time. 7:00 am and shift change started. The new nurse came in to introduce herself and (thank gosh) take me to the bathroom. This next part of the day became my favorite. My hubby would go to get me a latte and Egg McMuffin (yes I ate at McDonald’s but it was an egg white). We would sit there and catch up on how we felt, what was on schedule for the day, etc. Around 8:00 am the fellows would make their rounds and let us know when the physician on call would be in to see me. After that I would use the time to change undies and use wipes to wash off a bit. You have no idea how good it feels to do that while in the hospital. Around 9:00 am the physician would come in to discuss how I am feeling and how the night went. At this point we had seen no activity or change so it was going to be long week. We did get some good news. I wouldn’t be sleep deprived that night. No matter how much I wanted to sleep I couldn’t ever fully go to sleep during the day. My parents came to see us Tuesday night and brought us food so Casey could drive home and shower. I cannot stress this enough, your husband or loved one is going to need a break away from time to time. This process is tough and it’s even tougher for them sleeping on a pull out couch. I swear my husband deserves a Medal of Honor for that week. I read magazines ,watched tv while they were there, and thankfully fell asleep. The cycle started again. 7:00 am shift change (bathroom), breakfast, and waiting for the fellows. This was the morning when it really hit me where we were and how truly exhausted I was. My “happy Rachel smile” had slowly started to fade. Upon the physicians morning he stated that they found some blips on the eeg from the night before and were investigating them. He also stated the dreaded words, “sleep deprivation night”. He then proceeded to tell us if we could not get a seizure we would need to plan for a weekend stay. I remember crying and praying for a seizure. Never in my wildest dreams would I ever wish that upon anyone. Laying in that bed day and night , your head hurting because of the eeg leads, sugar highs and crashes, no meds, and no sleep makes a whole other person come out. I was truly miserable. I decided I was going to do my best to put on a happy face and do this. My husband went to get my favorite tacos and red velvet cake. My sister came to visit so that Casey could get a shower at home. My physician came to sit with us and catch up on how we both felt. She sat there for an hour. This part made me realize the real reason why she wanted me to do this. She cared so much about us that she wanted to give us the best care instead of shooting in the dark. We as a family have had 100 seizures combined between us. None of us are the same seizure wise. The night started sinking in. This night was the toughest night I’ve ever had to go through physically. When you take away all of the comforts that your body as a seizure patient has grown accustomed to you become out of your element. I began having my aura quite frequently. I would see the flashing light and the jerk over and over with no seizure following. I watched the last two seasons of Grey’s and was bored. The nurse suggested I walk around the floor and sit in my door as she was doing rounds. The eeg tech came out to adjust the cameras. They both sat there with me and talked about why I was doing this process and my family (my sister had been on that floor a few years before). They shared their life with me. They brought me pop sickles and cupcakes from the nurses lounge. I can remember sitting in the chair outside the door jerking so badly due to auras. I had never felt that before for so long. I had been conditioned to take an extra dose of meds and sleep. I couldn’t do either. I finally hit 3:00 am and they stated they had enough and I could finally go to sleep. #### Neurology nurses make all the difference I cannot emphasize this enough, the nursing staff were the people that kept me going. They were incredible! I fell asleep without putting the covers on. I couldn’t stay awake long enough to put them on. I slept so well that night. I remember waking up to the sweet nurse saying that it was time to wake up. I drank my coffee and prayed they would let us go home. The fellows came in and gave us the time window. The physician took longer that day (or it felt like it). He finally came. He stated that the type of seizure that I had was completely different than the one I previously had. They found that I had generalized tonic clinic seizures versus what they previously suspected was focalized which could have been treated with ablation treatment. Instead I was told to continue on the medication train but this time they found that the medication that I was on, topomax was not the optimal choice; keppra was. So reflecting on this process I would say that it was one of the hardest things I have ever had to go through but it was worth it in the end because we found hope and a treatment plan. If you’ve ever considered this test I would recommend it over and over again. It will completely change your seizure plan. I will also share that while I didn’t have a seizure that week, I did exactly one month after. Apparently this is common. When a person goes through that period of trauma in your life seizure wise all at once it may take time for your body to cope with it. I guess my piece of advice here is to be as seizure prepared or more after your stay just as much as you were in the hospital. It’s not the end of the world to have one, yes I was so conditioned to think that it was a failure. This was a time where I gained a whole different perspective for them. #### A note to loved ones Finally my husband is going to write a bit about it from his perspective as well since he was there for all 5 days with me by my side. “Rachel called her EMU sadistic summer camp. They kept her awake for 24 hours at a time and exposed her to strobe lights in order to induce a seizure and the only way she could stay awake through it was lots of caffeine and sugar. If your loved one is going to have an EMU, you should plan on being with them the whole time. The EMU study is physically and emotionally draining and they will need someone by their side to comfort them when they feel like giving up. It was all worth it in the end because Rachel’s doctor was able to learn what type of seizures she has and is now better able to manage her seizures. #### Caregiver Tips: - Do something everyday to boost their spirits; I brought Rachel dinner every night, along with lots of candy and caffeine. - Even when you are asleep just being there is comforting. - When you get home help them with the shower, they will be weak and need help. - Buy a bottle of baby oil to remove the glue from their hair; it will take at least 20 minutes to get it out. - Your work starts after you get home; they will need help because they are sleep deprived and just had a seizure. --- **NEXT UP:** Be sure to check out the next post tomorrow at . ![author avatar](https://secure.gravatar.com/avatar/82d406d4460971f22d36968d14d1294a2a0c55c719c5b66a09acb2d2ad3872f2?s=300&d=mm&r=g) Rachel Ehrhardt Rachel Ehrhardt Streelman is from Houston , Texas. She has been a writer and contributor to Living Well with Epilepsy for two years. Rachel has had epilepsy since 9 months old. She comes from a family where her father, sister, and herself all have different forms of epilepsy. Rachel is married to Casey and they have a Cavapoo named Sheldon. [See Full Bio](https://livingwellwithepilepsy.com/author/rachel) [ ](https://livingwellwithepilepsy.com/author/rachel) **Categories:** About Epilepsy, Epilepsy Stories, Nov 19 EBR Posts **Tags:** eeg, emu --- ### [Epilepsy Blog Relay: Life with Cerebral Palsy and Epilepsy Gets Real](https://livingwellwithepilepsy.com/epilepsy-stories/life-with-cerebral-palsy-and-epilepsy.html) **Published:** November 1, 2019 **Author:** Jennifer Lounsbury **Excerpt:** Having a child with cerebral palsy and epilepsy has been a 'learn-as-I-go' experience, and I’ve really had to decide what is most important. To me, that is sticking to Colleen’s schedule, no matter what. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/03/img_5909-300x300.jpg "img_5909 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/epilepsy-blog-relay-that-one-time-where-its-okay-to-be-a-helicopter-parent.html/attachment/img_5909-2)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** When I was [pregnant with Colleen](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/nov-18-ebr-posts/colleens-mom-reminds-us-that-knowledge-is-power.html), I dreamed of the things that were to come. But, having guilt over family time — especially guilt over Thanksgiving, Christmas, and birthday’s — was not part of the dream. Having a child with cerebral palsy and epilepsy has been a ‘learn-as-I-go’ experience, and I’ve really had to decide what is most important. To me, that is sticking to Colleen’s schedule, no matter what. #### On Running Late Things run late. Events happen during nap time. It’s important to plan ahead for events, and to make sure I [bring medications](https://livingwellwithepilepsy.com/2015/traveling-with-epilepsy/traveling-with-epilepsy-takeoff.html) just in case. But it’s also so important you talk with your families, so that they understand. When I grew up, I didn’t know anyone with epilepsy. My daughter was the first. With that, there was a learning curve not only for us, but for the understanding of others. #### On doing my best When I say I can’t stay late, or that time doesn’t work, please don’t take it personally. I am trying my best. I want Colleen to learn and have fun, and to be a part of activities. But, I also know how delicate the balancing act can be, and I am not willing to put her health and well-being in jeopardy. It is my only hope that family and friends will be understanding — and most are. But, it sometimes may take a good heart-to-heart. I would give anything in the world for Colleen to not have to struggle with epilepsy, so knowing that I can do things to make sure she stays healthy by sticking to her routine is the most important. Just know, a little heart-to-heart can go a long way to give others a chance to better understand. --- **NEXT UP:** Be sure to check out the next post tomorrow at . ![author avatar](https://secure.gravatar.com/avatar/2d7fe6c0eded69888607fe806fbe9bc4b4f814de382f989b182dab6125aed61c?s=300&d=mm&r=g) Jennifer Lounsbury CP/Epilepsy Advocate. Photographer and designer. “Courage, dear heart.” [See Full Bio](https://livingwellwithepilepsy.com/author/jennylouns) [ ](https://livingwellwithepilepsy.com/author/jennylouns) **Categories:** Cerebral Palsy and Epilepsy, Epilepsy Stories, Nov 19 EBR Posts **Tags:** cerebral palsy, cp --- ### [Epilepsy Blog Relay: Andy takes charge of his epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/andy-takes-charge-of-his-epilepsy.html) **Published:** June 27, 2019 **Author:** Jessica K. Smith **Excerpt:** Andy is doing what he can every day to take charge his epilepsy. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/06/Screen-Shot-2019-06-26-at-10.04.59-PM-e1561602024968.png "Screen Shot 2019-06-26 at 10.04.59 PM – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/andy-takes-charge-of-his-epilepsy.html/attachment/screen-shot-2019-06-26-at-10-04-59-pm)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** This blog post was submitted by [Sunovion Pharmaceuticals Inc.](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2019-sponsors-and-partners), the Founding Sponsor of the June 2019 Epilepsy Blog Relay. *For more information, please see the APTIOM [Medication Guide](http://aptiom.com/Aptiom-Medication-Guide.pdf) and [Full Prescribing Information](http://www.aptiom.com/Aptiom-Prescribing-Information.pdf) on APTIOM.com. This is Andy’s story and individual results with APITOM® (eslicarbazepine acetate) may vary.* Additionally, please see [Important Safety Information](#safetyinfojune19) at the end of the blog post. #### Andy’s Story I was diagnosed with partial-onset seizures at eight years old, and, at the time, I had no idea what this meant. I was confused, and so was my family. We quickly learned that there was a lot of confusion surrounding epilepsy and we needed to get educated. One of the hardest parts of living with epilepsy for me was definitely the daily uncertainty. Not knowing when I would have a seizure made me feel closed off. My partial-onset seizures started mildly when I was younger, which I could hide pretty well because to people at school it just looked like I was spacing out. As I got older, I got more active and had more going on. I started playing sports at the agreement of my doctor, but also dealt with the nerves of taking more tests in school and just having the typical stresses of a teenager. All of these stressors were often triggers for me. I continued to live my life, but I had to be cautious and this caused anxiety. The uncertainty of every day was extremely frustrating. It totally changed the way I was interacting with the world because of this high-risk lens on life that kept me highly conservative—certain days I felt great and there were no causative factors I could put a finger on, but seizures would still come on totally randomly. In my attempt to pretend like I didn’t have epilepsy day in and day out, I’d always push myself too far. I took an investment banking job after graduating college. That was super stressful and I hardly got any sleep—all the ingredients you don’t want for epilepsy. My health held up, but it wasn’t sustainable. Later I moved to Philadelphia, and as soon as I got a better work/life balance my health took a turn for the worse. I really wasn’t doing well and my partial-onset seizures were occurring more frequently. Eventually, after working with my health care team, we added APTIOM adjunctively to my treatment regimen. APTIOM is an FDA-approved prescription medicine for patients four years old and older that can be used alone or with other medicines to treat partial-onset seizures. I take one pill a day, at the same time every day. So far, my doctor and I have been pleased with the reduction in the frequency of my partial-onset seizures. Of course, this is just my experience and yours may be different. It’s very important for people to discuss all the potential side effects of any medicine with their doctor before starting treatment. The most common side effects in patients taking APTIOM include dizziness, sleepiness, nausea, headache, double vision, vomiting, feeling tired, problems with coordination, blurred vision, and shakiness. Managing epilepsy, particularly into adulthood and as my own advocate, is really tough. When you have epilepsy, you find that so much of your mental space is consumed with epilepsy and the unknown. How did I sleep? What did I eat? Am I more stressed? That uncertainty of epilepsy is ever-present. Now, I’m more proactive about the management of my epilepsy. I’ve found a doctor here in New York who I communicate and collaborate well with, and every time I have an episode, I try to understand those contributing factors. I created a seizure diary especially for when it would get bad. It’s a proactive effort to try to find the best way to deal with my partial-onset seizures. I feel like I’m doing what I can every day to take charge my epilepsy. **Indication:** Aptiom® (eslicarbazepine acetate) is a prescription medicine to treat partial-onset seizures in patients 4 years of age and older. #### **Important Safety Information:** It is not known if APTIOM is safe and effective in children under 4 years of age. Do not take APTIOM if you are allergic to eslicarbazepine acetate, any of the other ingredients in APTIOM, or oxcarbazepine. **Suicidal behavior and ideation:** Antiepileptic drugs, including APTIOM, may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call your doctor right away if you have any of the following symptoms, especially if they are new, worse, or worry you: thoughts about suicide or dying; attempting to commit suicide; new or worse depression, anxiety, or irritability; feeling agitated or restless; panic attacks; trouble sleeping (insomnia); acting aggressive; being angry or violent; acting on dangerous impulses; an extreme increase in activity and talking (mania); or other unusual changes in behavior or mood. **Allergic reactions:** APTIOM may cause serious skin rash or other serious allergic reactions that may affect organs or other parts of your body like the liver or blood cells. You may or may not have a rash with these types of reactions. Call your doctor right away if you experience any of the following symptoms: swelling of the face, eyes, lips, or tongue; trouble swallowing or breathing; hives; fever, swollen glands, or sore throat that do not go away or come and go; painful sores in the mouth or around your eyes; yellowing of the skin or eyes; unusual bruising or bleeding; severe fatigue or weakness; severe muscle pain; or frequent infections or infections that do not go away. **Low salt (sodium) levels in the blood:** APTIOM may cause the level of sodium in your blood to be low. Symptoms may include nausea, tiredness, lack of energy, irritability, confusion, muscle weakness or muscle spasms, or more frequent or more severe seizures. Some medicines can also cause low sodium in your blood. Be sure to tell your health care provider about all the other medicines that you are taking. **Nervous system problems:** APTIOM may cause problems that can affect your nervous system, including dizziness, sleepiness, vision problems, trouble concentrating, and difficulties with coordination and balance. APTIOM may slow your thinking or motor skills. Do not drive or operate heavy machinery until you know how APTIOM affects you. **Liver problems:** APTIOM may cause problems that can affect your liver. Symptoms of liver problems include yellowing of your skin or the whites of your eyes, nausea or vomiting, loss of appetite, stomach pain, or dark urine. Most common adverse reactions: The most common side effects in patients taking APTIOM include dizziness, sleepiness, nausea, headache, double vision, vomiting, feeling tired, problems with coordination, blurred vision, and shakiness. **Drug interactions:** Tell your health care provider about all the medicines you take, including prescription and over‐the counter medicines, vitamins, and herbal supplements. Taking APTIOM with certain other medicines may cause side effects or affect how well they work. Do not start or stop other medicines without talking to your health care provider. Especially tell your health care provider if you take oxcarbazepine, carbamazepine, phenobarbital, phenytoin, primidone, clobazam, omeprazole, simvastatin, rosuvastatin, or birth control medicine. **Discontinuation:** Do not stop taking APTIOM without first talking to your health care provider. Stopping APTIOM suddenly can cause serious problems. **Pregnancy and lactation:** APTIOM may cause your birth control medicine to be less effective. Talk to your health care provider about the best birth control method to use. APTIOM may harm your unborn baby. APTIOM passes into breast milk. Tell your health care provider if you are pregnant or plan to become pregnant, or are breastfeeding or plan to breastfeed. You and your health care provider will decide if you should take APTIOM. If you become pregnant while taking APTIOM, talk to your health care provider about registering with the North American Antiepileptic Drug (NAAED) Pregnancy Registry. The purpose of this registry is to collect information about the safety of antiepileptic medicine during pregnancy. You can enroll in this registry by calling 1‐888‐233‐2334. Get medical help right away if you have any of the symptoms listed above. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1‐800‐FDA‐1088. For more information please see the APTIOM Medication Guide and Full Prescribing Information on APTIOM.com. APTIOM is a registered trademark of BIAL, used under license. SUNOVION is a registered trademarks of Sumitomo Dainippon Pharma Co., Ltd. Sunovion Pharmaceuticals Inc. is a U.S. subsidiary of Sumitomo Dainippon Pharma Co., Ltd. ©2019 Sunovion Pharmaceuticals Inc. All rights reserved. 6/19 APT-US-00133-19 *This blog post was submitted by Sunovion Pharmaceuticals Inc., the Founding Sponsor of the June 2019 Epilepsy Blog Relay.* --- **NEXT UP:** Be sure to check out the next post tomorrow at . For the full schedule on bloggers and more on epilepsy awareness, visit . ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. 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](https://linkedin.com/in/) **Categories:** Epilepsy Stories, Jun 19 EBR Posts --- ### [LIVINGWELLCHAT on CBD, Medical Marijuana and Epilepsy: June 30 at 7pm ET](https://livingwellwithepilepsy.com/epilepsy-news-and-research/june18livingwellchat.html) **Published:** June 30, 2018 **Author:** Jessica K. Smith **Excerpt:** On 6/30 at 7pm ET, we will host our next #LIVINGWELLCHAT. We will hear from the community on what the new marijuana-based epilepsy drug could mean for families affected by LGS and Dravet Syndrome. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/06/June-18-Twitter-Chat.jpg "June 18 Twitter Chat – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/jun-18-ebr-posts/june18livingwellchat.html/attachment/june-18-twitter-chat) #### LIVINGWELLCHAT On Sat. June 30 at 7pm ET we will host our next #LIVINGWELLCHAT. In light of the recent FDA approval of EPIDIOLEX we will hear from the community on what this new drug could mean for families affected by LGS and Dravet Syndrome. At the end of every *Epilepsy Blog Relay™,* we close with a live #LivingWellChat. Join us tonight, June 30, at 7pm ET, to connect with some of our fantastic bloggers. The chat lasts about 1 hour. Just use the hashtag #LivingWellChat to filter out all the other social noise on twitter and join the conversation. #### How does the chat work? You will find #LivingWellChat is very simple: We start with a general topic, and the conversation flows from there. We encourage spontaneous discussion with tons of Q&A. #### This Month’s Topic*: **What could EPIDIOLEX mean for those living with epilepsy?*** Throughout the chat we will touch on the following: Q1: Take a minute to say hello and introduce yourself. Q2: Is anyone on the chat [affected by LGS](https://livingwellwithepilepsy.com/2018/aboutepilepsy/family-pushing-boundaries-of-lgs.html) or Dravet Syndrome? Q3: If you are not affected by LGS or Dravet, are you living with or affected by epilepsy in some way? Q4: Is everyone here familiar with LGS and Dravet? Maybe those families living with these syndromes could share a bit about them. Q5: Regardless of the type of epilepsy, have you tried some type of [alternative therapy](https://livingwellwithepilepsy.com/2018/aboutus-lwwe/emilys-perspective/self-care-tips-to-try.html) (CBD Oil, [Ketogenic diet,](https://livingwellwithepilepsy.com/start-here) Yoga, etc) to help manage your seizures? Q6: I’m curious, did you hear testimony from any of the families who spoke to the FDA on Epidiolex this spring? Q7: As I understand it the drug won’t be available until Fall the earliest but has there been any [discussion of cost](https://livingwellwithepilepsy.com/2017/rachels-perspective/healthcare-debate-rachels-story.html)? Q8: Can anyone speak to what [other options are are available for LGS](https://www.onfi.com/copay-card-free-trial?s_mcid=SMONFB170) and Dravet families? Q9: This is a question for everyone, when you were first diagnosed [was SUDEP ever discussed](https://livingwellwithepilepsy.com/iamsudepaware)? Q10: Is there something you wish your doctor spent more time talking about in that first discussion? Q11: What do you want the world to know about the realities of [living with epilepsy](https://livingwellwithepilepsy.com/about-epilepsy)? Q12: Join us throughout the month of July for our [\#livingwelloutside campaign](https://www.instagram.com/p/Bkc52smAkDP/?taken-by=livingwellwithepilepsy). We will be sharing fun stories and pics. You can use the July hashtag and share your stories here: You can follow the July stories on: #### Participating in the June #LivingWellChat 1\. Go to OR 2\. Be sure to **log in** using your twitter account \*\*IMPORTANT\*\* 3\. Set the chat speed as fast or slow as you prefer 4\. The Twitter feed will pop up with all the #LivingWellChat tweets. 5\. Be sure to introduce yourself when you come on the chat 6\. Join the conversation I really like Twubs, but some people prefer Tweetchat. Others prefer to participate within Twitter. It’s up to you! #### **Follow along even if you don’t have a twitter account** You won’t be able to chime in with your own comments but here are two ways to follow along: Option 1: Go to the [Living Well With Epilepsy Facebook page](https://www.facebook.com/livingwellwithepilepsy/) and click on the [Twitter tab](https://www.facebook.com/livingwellwithepilepsy/app/294627540601598/). Option 2: Go to and watch the chat in the footer of the home page. #### Can anyone join in the conversation? Join in the conversation! Whether you have been living with epilepsy for decades, or if you are newly diagnosed, you and your loved ones will find something of interest on the next #LivingWellChat. #### Did you enjoy the Epilepsy Blog Relay? Our next Epilepsy Blog Relay will take place in November, just in time for Epilepsy Awareness Month. If you have a story to share, sign up now. Spots are going fast. [Here’s the link to participate as a blogger.](https://docs.google.com/forms/d/e/1FAIpQLSeL2_5ag6PfgRWP5IVCMEC_zXkGDyV4ULMA7NdaRfnwfhQAjw/viewform) If you would like to participate as a sponsor, send us an email to info@livingwellwithepilepsy.com. We will be happy to send you our media kit. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Jun 18 EBR Posts, Newly Diagnosed, News and Research **Tags:** #LivingWellChat, CBD, epidiolex, marijuana, medical marijuana --- ### [Brain Tumor and Epilepsy: Life after surgery on a benign brain tumor](https://livingwellwithepilepsy.com/epilepsy-stories/brain-tumor-and-epilepsy-life-after-surgery.html) **Published:** July 8, 2019 **Author:** Emily Lawrence (Nee Donoghue) **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/06/img_1493-300x225.jpg "img_1493 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/brain-tumor-and-epilepsy-life-after-surgery.html/attachment/img_1493)Lisa’s Story It was December 2007 and I had been suffering with awful, constant headaches for the past 2 years and had been going back and forth to the doctors who unfortunately just gave me migraine tablets. I thought maybe I needed an eye test so as a last hope I booked in at the opticians. When the optician looked into the back of my eye he froze for a second then said ‘I’m going to have to refer you to the hospital immediately’. A bit shocked by his reaction I said “ok;” called my partner, Simon, to accompany me and off we set to the hospital. On arrival the consultants looked in my eyes, then sent me off for a [CT Scan and then for an MRI scan](https://livingwellwithepilepsy.com/2017/rachels-perspective/testing-in-epilepsy.html). During this time I was given a hospital bed. All a very quick, scary process. Then, a couple of hours later, whilst waiting on my hospital bed a consultant came over and drew the curtains around us, knelt down and held my hand and said ‘I’m sorry Lisa, we have found a [benign brain tumor](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/brain-tumor-survivor-writes-her-first-book.html)‘. Sounds strange but even though they had found something so harsh I was just so relieved they had finally found something and I was hopefully going to be cured from my constant headaches. --- **Related: [Epilepsy Blog Relay: Brain Tumor Survivor writes her first book](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/brain-tumor-survivor-writes-her-first-book.html)** --- #### Preparing for Brain Surgery The following weeks I was referred to Frenchay Hospital in Bristol where a consultant was to operate to remove the brain tumor. He advised all the risks of the operation – death, paralysed down one side, deafness, blindness, the list was endless. It was so scary but so surreal at the same time. My operation was booked for a couple of weeks later. Christmas was in between so I tried to enjoy the festivities with my family without thinking of the operation too much. On the day of the operation I was supposed to go to theatre early but an emergency came in so it put my operation back. I finally went down around midday. It took a total of 13 hours to remove my tumor, taking it into the early hours of the morning. My parents and Simon were called to come down to the High Dependency ward where I was recovering. I’m thankful to say the operation was successful. #### A Year Later It was just over a year later when I began to have slight seizures. At the time not really knowing what they were I carried on with my day-to-day life. Unfortunately one day driving to work I had a major car accident and rolled my car due to having a seizure at the wheel. I was referred to a specialist and was diagnosed with left frontal lobe Complex Partial Seizures. I’ve had these for about 9 years now and have tried various medications to reduce or try and stop the seizures. I’ve tried Lamotrogine, Keppra, Clobazam, Tegretol and Zonegran. Unfortunately none have stopped the seizures. I do get very frustrated and think why won’t these seizures just stop! I feel part of my independence has gone since having to give up my driving license and having to take public transport everywhere. It’s usually tiredness and stress that bring on my seizures so I do try and control these best I can. --- **Related: [Emily’s Perspective: Newly diagnosed with epilepsy or epileptic seizures?](https://livingwellwithepilepsy.com/2015/aboutus-lwwe/emilys-perspective/new-to-epileptic-seizures.html)** --- #### Staying positive I love [yoga which helps calm me](https://livingwellwithepilepsy.com/2018/fitnessandepilepsy/4-reasons-to-exercise-when-you-have-a-chronic-illness.html) and when I have felt I’ve needed a bit more professional help I have seen a CBT Therapist which has helped me understand my feelings flying round in my head. Most importantly my partner Simon is my rock. Supporting me through all of this, aiming to keep me positive. My mum is also always there to keep me going if I need a pick me up too. Family and friends support is so important. Never stop fighting. [SHARE YOUR STORY ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://secure.gravatar.com/avatar/5523d28ae8bbaedc9d082d51d29393ca490379cd31464b99ab3c7d50a49362ac?s=300&d=mm&r=g) Emily Lawrence (Nee Donoghue) 25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England. Emily's Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10. Based in UK. [See Full Bio](https://livingwellwithepilepsy.com/author/emilyd) [ ](https://livingwellwithepilepsy.com/author/emilyd) **Categories:** Brain Tumor and Epilepsy, Epilepsy Stories, Newly Diagnosed **Tags:** Brain tumor and epilepsy --- ### [Epilepsy Blog Relay: Diagnosed with epilepsy as an adult](https://livingwellwithepilepsy.com/epilepsy-stories/diagnosed-with-epilepsy-as-an-adult.html) **Published:** June 1, 2019 **Author:** Emily Lawrence (Nee Donoghue) **Excerpt:** Emily shares some insight to living with Epilepsy as an adult including how to handle work, transportation, stigma and anxiety. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/02/51974366_2245493142370887_8047449779787005952_o-e1550020655326-300x300.jpg "51974366_2245493142370887_8047449779787005952_o – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/searching-for-my-passion-my-quarter-life-crisis.html/attachment/51974366_2245493142370887_8047449779787005952_o)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** Welcome to week one of the June 2019 Living Well with Epilepsy, Epilepsy Blog Relay. I hope you enjoy everybody’s columns and find them inspirational like I always do. For me, Epilepsy has always been ‘my life’ from a young age. It has had an effect on almost every aspect of my life. It affected my family, and still does. It affected my friendship groups, it had affected people who pass me in the street, it has affected bus drivers, train rides, and I personally believe it affects people’s views of me in work. People are scared, and that is OK because I was scared too, but it doesn’t help the person with Epilepsy. **Read more about Epileptic Seizures here:** - [Epilepsy Action:Seizures Explained](https://www.epilepsy.org.uk/info/seizures-explained) - [Epilepsy Ontario: Seizure Types](http://epilepsyontario.org/about-epilepsy/types-of-seizures/) - [Epilepsy Foundation: Types of Seizures](https://www.epilepsy.com/learn/types-seizures) - [Mayo Clinic: Seizures](https://www.mayoclinic.org/diseases-conditions/seizure/symptoms-causes/syc-20365711) #### Epilepsy as an Adult Since the last Epilepsy Blog Relay, I have met *so* many people who have been newly diagnosed with Epilepsy as adults. This made me realize how much of an impact it has on adults who are diagnosed when they have children, jobs they’ve held for years prior to diagnosis, married etc, and it just got me thinking–how does Epilepsy affect every day life of adults. Being diagnosed with Epilepsy as an adult, in my eyes, is possibly harder than being diagnosed as a young person. I say this because of personal experience. I have grown up, not really knowing any different. I have never driven a car, I have never really drank alcohol, I have started jobs with my employers knowing I have a condition already. But those diagnosed as an adult may have to stop driving. What if your job is 30 miles from your house and you rely on driving to get there? Or what if you work as a bus driver. What if you do a job that can’t be done if you have seizures, or you can’t handle machinery due to your medications? Things like this can have a *huge* impact on your life. All of a sudden you’re having tests left right and centre, and it is more than just trying a medication and getting back to normal everyday life. #### You are not alone [Doctors estimate that about **1 to 3 percent** of the population has some form of epilepsy.](https://www.ncbi.nlm.nih.gov/pubmed/12838266) It is such a complicated spectrum of disorders. Some people have relatively easy to control seizures, others are a lot harder. Epilepsy is the fourth most common neurological disorder, and professionals say it’s more predominant than autism spectrum disorder, cerebral palsy, multiple sclerosis and parkinsons combined. 70 percent of patients can successfully manage their epilepsy with medication, whilst others (like me) face uncontrollable seizures and it is a lot harder. Epilepsy is a treatable condition – but it takes time. > Professionals say \[epilepsy is\] more predominant than Autism Spectrum Disorder, Cerebral Palsy, Multiple Sclerosis and Parkinson’s combined. #### There are resources Now, as an adult who is newly diagnosed-try not to panic. This is easier said than done, I know. But whilst you are going through your tests, or getting used to your medications, you are covered by the equality acts (or the Americans with Disability Act, in the states) and you are classed as disabled by the equality laws if you have epilepsy that has a substantial effect on your day-to-day activities. Or would have a substantial effect, if you were not taking your epilepsy medicine. --- Related: [Americans with Disabilities Act and Epilepsy](https://livingwellwithepilepsy.com/2018/aboutepilepsy/americans-with-disabilities-act-epilepsy.html) --- #### How to handle epilepsy at work If you have a type of epilepsy that is not currently causing any problems and doesn’t need epilepsy medicine, but could be triggered by specific certain circumstances, then you are likely to be covered too. **In the UK** **“Never** keep your condition, or current investigations to yourself, always tell your employer or head office in order for you to get your support. Employers have to make reasonable adjustments to help an individual with epilepsy enter into or continue to work by ensuring that the individual isn’t at a disadvantage compared to someone without epilepsy.” – Emily **In the US** “In the States, it is sad to say but not everyone is as enlightened as we would like them to be. Remember you are not required to disclose your disability in an interview or on the job. If you are in need of reasonable accommodations then it may be in your best interest to disclose at a time that works for you and your employer.” – Jessica There are certain jobs that may be unsuitable for people who suffer with uncontrolled seizures, however, including working: - at heights; - near open water; - with high voltage electricity; - on or near moving vehicles; - operating rider operated machinery or heavy plant; - with unguarded fires, ovens and hot plates; - in isolated environments. If you are unsure how to talk to your manager about your epilepsy, have your Neurologist or GP (primary care doctor) write a letter first. If you are concerned about your transport to work, the cost of public transport etc-look into your local area options. For example, where I live in the UK, you can get free bus pass, a railcard and an Access to work scheme where your work can cover the costs of travel. --- Related: [Epilepsy and Transportation](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/epilepsy-and-transportation-how-an-electric-bike-saved-the-day-for-one-mom-in-portland.html) --- #### But what about the stigma? There is a lot of stigma around Epilepsy, even now in 2019. I still have people contact me saying I can’t live a normal life, that I have my head in the clouds, is my Epilepsy contagious, what if I swallow my tongue or how many times I have swallowed my tongue. I even had a man on a bus tell me that it was part of a curse and that I shouldn’t be allowed out. Stigma or myths doesn’t upset me anymore. As a child when I didn’t get invited to parties because my friends parents didn’t want that ‘burden’, it bothered me a lot. But as I have gotten older I have taken it upon myself to raise awareness and fundraise to slowly get rid of the stigma and myths around it. You can read my ideas on Living Well with Epilepsy about how to [get involved in raising awareness](https://livingwellwithepilepsy.com/2017/aboutus-lwwe/emilys-perspective/emilys-perspective-purple-day-2017.html) here. #### Anxiety and Epilepsy The last thing I would like to cover is dealing with anxiety when living with Epilepsy. This is a huge one, and it [affects most people with Epilepsy](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5706354/). My biggest tip for you, which again is difficult, is Acceptance. You need to *accept* that you have Epilepsy. It is one of the most difficult things you can do but it will change your life and once you get on top of that, you can conquer anything! There will always be things in life that are out of our control, and many times these are the things that create the most anxiety. Epilepsy is unpredictable, and sometimes uncontrollable. It can be challenging to overcome the fears and worries associated with the unknown, but it is important to understand that spending time focusing on these unknowns does not change them. You can worry all day about having a seizure when walking to the shops, but will it prevent the seizure? Most likely not, it may even cause a trigger due to stress.Identify some of the situations or concerns that cause you the most anxiety, and ask yourself if these things are under your control. If the answer is yes, identify the tasks you need to complete to get rid of this worry and go and do them. If the answer is no, realise that there will always be aspects of our life and the lives of others that we cannot change and remind yourself it is okay to accept this. I have a sketch on my phone with a worry chart on it, and if I am ever overthinking something, I take time out to read it and do some deep breathing. #### What to do about the worry? I got married in February this year, and I lost sleep over worrying about having a seizure on the biggest day of my life. Did I have a seizure? No thank goodness, but did I lose about 4 hours sleep a night worrying about it? Yes, I did. The night before my wedding, I had a pamper evening. Although you probably don’t have time for this every night, especially if you have children and can’t even use the toilet in peace, take time out at least once a week to unwind and relax, and it will also give you something to look forward to if you are having a hard time. Relaxation techniques can differ from person to person, as each individual relaxation and peace in different activities. There are many techniques you can use to try to calm your anxiety. Practicing deep breathing can relieve tension and restlessness; take a moment to close your eyes and focus on your breathing when you feel anxiety coming on. Others find practicing yoga or meditation to be calming. Listening to or playing music, reading, and exercise are other activities that can help take your mind off of your fears and help you feel relaxed, such as a pamper night. Try a few of these techniques to see which are most effective for you. #### Your turn Please keep me updated on what you do to ease anxiety, how you manage your new diagnosis or what happens with work, because I would love to hear your story. --- ***NEXT UP:** Be sure to check out the next post by Whitney at [livingwellwithepilepsy.com ](https://livingwellwithepilepsy.com)for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay posts](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) you may have missed.* [Share Your Story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://secure.gravatar.com/avatar/5523d28ae8bbaedc9d082d51d29393ca490379cd31464b99ab3c7d50a49362ac?s=300&d=mm&r=g) Emily Lawrence (Nee Donoghue) 25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England. Emily's Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10. Based in UK. [See Full Bio](https://livingwellwithepilepsy.com/author/emilyd) [ ](https://livingwellwithepilepsy.com/author/emilyd) **Categories:** Epilepsy Stories, Jun 19 EBR Posts, Newly Diagnosed **Tags:** ADA, anxiety, epilepsy in adults, newly diagnosed --- ### [Epilepsy Blog Relay™: Whitney shares her journey with TLE](https://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-2.html) **Published:** March 19, 2017 **Author:** Whitney Petit **Excerpt:** From Whitney: It’s time I share my story, my journey with TLE, and join the fight to raise awareness. I want to help others who are too afraid to speak up. **Content:** #### [![](http://livingwellwithepilepsy.com/wp-content/uploads/2015/05/Whitney-Petit-300x300.jpg "Whitney Petit – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/portfolio/june-18-whitney-petit/attachment/whitney-petit)Day 19 of the Epilepsy Blog Relay™ Whitney Petit is an Epilepsy Blogger, Speaker & Advocate who takes us on her life’s journey through her blog [Changing Focus:Epilepsy Edition](http://www.cf-epilepsy.com/). Whitney was first diagnosed with epilepsy in 1986 and currently lives with Temporal Lobe Epilepsy. #### From Whitney It’s time I share my story, my journey and join the fight to raise awareness. I want to help others who are too afraid to speak up. [Read Whitney’s Post ](http://www.cf-epilepsy.com/) ![author avatar](https://secure.gravatar.com/avatar/13683cea3a9c0d5cc5a1f85fe87c891b4e8a666374942e9f00d375220d9131da?s=300&d=mm&r=g) Whitney Petit [See Full Bio](https://livingwellwithepilepsy.com/author/cfepilepsy) [ ](https://livingwellwithepilepsy.com/author/cfepilepsy) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://www.twitter.com/cfepilepsy) **Categories:** Epilepsy Blog Relay, Mar 17 EBR Posts, Temporal Lobe Epilepsy **Tags:** Epilepsy Blog Relay --- ### [Epilepsy Blog Relay: Alison is shedding a little light on epilepsy](https://livingwellwithepilepsy.com/epilepsy-blog-relay/mar-18-ebr-posts/alison-is-shedding-a-little-light-on-epilepsy.html) **Published:** March 25, 2018 **Author:** Guest Contributor **Excerpt:** Here’s to the caregivers for people with epilepsy! Here’s to those who live with us, take us to the hospital, and love us any which way they can. And here’s to that selfless love. It gets us through all that life has thrown at us. **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/05/Facebook-photo-2-300x200.jpg "Facebook photo – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/facebook-photo-3)This post is part of the Epilepsy Blog Relay™ which will run from March 1 to March 31, 2018. Follow along!*** #### Shed Light on Epilepsy Alison writes the site, Shed Light on Epilepsy. She hid her condition for 36 years, but recently began opening up, choosing moments (ideally somewhat casual ones) to tell people I knew well of my epilepsy. #### Excerpt from post Here’s to the caregivers for people with epilepsy! Here’s to those who live with us, take us to the hospital, and love us any which way they can. And here’s to that selfless love. It gets us through all that life has thrown at us. [Read Alison’s Post](http://www.shedlightonepilepsy.org/) --- NEXT UP: Be sure to check out the next post by Drake at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com). For the full schedule of bloggers visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com). TWITTER CHAT: And don’t miss your chance to connect with bloggers on the #LivingWellChat on April 2 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Mar 18 EBR Posts, Temporal Lobe Epilepsy --- ### [Epilepsy Blog Relay: Creating Your Personal Mantra](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-blog-relay-creating-your-personal-mantra.html) **Published:** June 23, 2019 **Author:** Christalle Bodiford **Excerpt:** Have you ever used a mantra to help you through a tough time in your life? Christalle shares ideas of how to create your personal mantra. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/05/christalle-michael-schaffer-photography-6-e1561223613818-300x300.jpg "christalle-michael-schaffer-photography-6 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=20956)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** Christalle Bodiford is an artist, advocate, writer, and adventure seeker. As an entrepreneur diagnosed with epilepsy, Christalle brings a unique perspective of empowerment that inspires others to embrace a positive mindset and live with purpose. When she’s not writing or advocating, Christalle enjoys puppy snuggles with her scruffy terrier and outdoor adventures with her husband. #### Post Excerpt Have you ever used a mantra to help you through a tough time in your life? Maybe you’ve never heard of using a mantra… so what is it? A mantra is a statement or slogan repeated frequently. Even something as simple as “You’ve got this!” can be a mantra. Mantras are recited for various reasons and there are endless possibilities of what you can come up with for your own mantras. “A mantra, whether chanted, whispered, or silently recited, is a powerful meditation and therapy tool.” Coming up with your personal mantras can be a creative and fun process. [Read Christalle’s Post ](http://www.christallepistol.com/creating-your-personal-mantra/) --- **NEXT UP:** Be sure to check out the next post tomorrow at . For the full schedule on bloggers and more on epilepsy awareness, visit . ![author avatar](https://secure.gravatar.com/avatar/c482cb9817c757de51d15b05e646343228dc696e4b401b723aec03077d040abd?s=300&d=mm&r=g) Christalle Bodiford Christalle Bodiford is an artist, advocate, writer, and adventure seeker. As an entrepreneur diagnosed with epilepsy, Christalle brings a unique perspective of empowerment that inspires others to embrace a positive mindset and live with purpose. When she’s not writing or advocating, Christalle enjoys puppy snuggles with her scruffy terrier and outdoor adventures with her husband. [See Full Bio](https://livingwellwithepilepsy.com/author/christallebodiford) [ ](https://livingwellwithepilepsy.com/author/christallebodiford) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/CreativeEpilepsyAdvocate/) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://twitter.com/ChristalleArt) **Categories:** Epilepsy Stories, Jun 19 EBR Posts --- ### [Epilepsy Blog Relay: When taking it slow helps seizure control](https://livingwellwithepilepsy.com/epilepsy-stories/when-taking-it-slow-helps-seizure-control.html) **Published:** June 22, 2019 **Author:** Guest Contributor **Excerpt:** Hayley shares her experience of when taking it slow helps seizure control. Though this approach requires a lot of patience it seems to help her. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/06/profile-picture-300x300.jpg "profile-picture – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/when-taking-it-slow-helps-seizure-control.html/attachment/profile-picture)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** #### Hayley’s Story I wanted to share some thoughts about the virtue of patience and how you have to learn to develop it by the bucket-load to be able to cope when living with uncontrolled epilepsy. #### Living with uncontrolled epilepsy I have a little wooden box which my sister bought me. It’s full of little metal talismen (is that the plural of talisman?). It comes with a key-ring pouch and you pick the one which you need most every day to carry around with you to remind you to think about that virtue (strength, hope, courage, patience etc) as a coping strategy. #### Changing Medications One major element of epilepsy which requires patience is when changing medications and waiting for appointments. Nobody warns you it’s going to be loooooooooong! Even as the neurologists or nurses blithely write out your drug charts with dosage instructions when transitioning from one drug to another it never fully registers that they’ve organised the change over a period of 16 weeks! That’s a third of a year. A third of a year for potentially feeling awful (and often progressively worse as the dose increases) while you grit your teeth and try to remember that the therapeutic dose you are working towards might be the magic bullet. It’s really tough. It’s by no means unique to epilepsy but these things can’t be done any faster, so all you can do is learn to be patient. #### Waiting between doctor appointments The gaps between appointments drag horrendously as well. It doesn’t matter how much you rationalize that there isn’t any point in anyone seeing you if a medication change isn’t complete. It still feels like you are being ignored and you find yourself wanting to be pointlessly poked and prodded to see if there is something that has been missed. My neurons, in a literal sense, go haywire if I do anything too quickly. My personality is naturally pretty intense; I’m not content unless I’m insanely productive. So, being reduced to a state where knowing the safest and most sensible way to get anything done is by moving at a snail’s pace has taken a lot of patience while I adapt. #### Slow is the new fast I am getting there, time has passed and slow has become the new fast. Getting up in the morning takes about two and a half hours; this works for me. Most of the time I can minimize my seizures this way and if they do come, I wait them out by patiently willing my brain to calm itself down. The other alternative (because patience isn’t always a practical option if I have to hurry somewhere) is to take a tranquillizer. This speeds up the calming down process for me but I’m sure you can agree it’s not really ideal. #### Slow cooking wins Cooking dinner is a slow process. Gone are the days of the Jamie Oliver meals in minutes for the stressed nine-to-fiver in our house, everything is put in the slow cooker or oven roasted. It’s safer and it minimizes the risk of burnt dinner and burnt me if I need to take time out for whatever reason. Again, with a bit of patience we still get to eat balanced meals every day. #### Eco-friendly transportation I can’t drive so I have to walk (or use public transport) which usually takes longer. It’s not the nicest in inclement weather but it’s good for me and the environment so it has it’s benefits. Being calm is one of the key elements of managing my epilepsy so I just have to remind myself what happens if I do try to (metaphorically and literally) speed up. I wish I could honestly say the world would be better if we all slowed down but I’m not quite there in terms of believing that yet. It’s okay though, sometimes going at a slower pace can be rewarding. I didn’t chose my circumstances and I liked doing everything at pace but slowly, slowly isn’t as bad as I thought it would be. #### Patience wins The last element I’d like to touch on in terms of raising awareness is the patience which those around you need if you’re living with epilepsy. The patience to look on while we tantrum and rant about how badly things are going and how horrible we feel, while you can’t do anything to fix it. The patience to take on an extra load because we’ve started something and then realized epilepsy isn’t going to let us finish it and the patience to wait for us while we sit around looking lazy because our bodies and brains are exhausted or if we need to take a break half way through an everyday activity. My memory isn’t too badly affected yet but you might also need to learn to be patient while we struggle to get our words out or remember what we wanted to say. Unless you happen to be a nurse who specializes in chronic conditions we know you weren’t any more equipped to deal with this than we were. It’s just one of those things we’ve got to learn to work with together. I hope this helps someone who is new to the journey, developing virtues doesn’t have to be as deep and meaningful as it sounds but reality of the situation is, unless you get really lucky, some things may take a really long time and the sooner you can learn to listen to your body the better you will fell, even if you can’t fix the seizures. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Jun 19 EBR Posts --- ### [Epilepsy Blog Relay: To my caregiver, in sickness and in health](https://livingwellwithepilepsy.com/epilepsy-stories/to-my-caregiver-in-sickness-and-in-health.html) **Published:** June 17, 2019 **Author:** Shonet Dsouza **Excerpt:** Ten years ago, my husband and I vowed to care for each other in sickness and in health. Little did we know, we would have to live out those words. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/06/20190419_165534-e1560811394891-284x300.jpg "20190419_165534 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=21085)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** > *“Who knew that when we said for better or for worse, it would be worse but for the better.” – Jean-Paul Bedard* #### Shonet’s Story “I take you to be my partner. I promise to be true to you, in good times and in bad, in sickness and in health, I will love you and honour you all the days of my life.” For those of us who are married, these vows are quite familiar. In fact, we often exchange them without really thinking about what they truly mean. Ten years ago, my husband and I did the same. Little did we know, we would have to literally live out the hardest part of them in our lifetime. So let’s flashback to 2012, when our seizure journey began…and I say “our” because illness of any kind (especially chronic illness) not only affects the person going through it, but their caregivers as well. It was about three years into our marriage and eleven years into our dating life (yes, I know, we were babies ;-p). What had started as a normal evening, which ended with us in the ER and doctors running all kinds of tests on me. #### On Driving In an instant our lives changed forever and the first blow was my license suspension. Now, I know that seems like a small piece of this puzzle we had found ourselves in, but driving for me meant so much more than just getting from A to B. It meant independence and freedom, and not being able to do that, limited me in so many ways. So now my husband had to take on that role (which he loves to do by the way!) and drive me around everywhere. I struggled with that for a long time as I had never felt so dependent on someone, especially after working so long to grow up and actually be independent. Sometimes we joke that he is my personal uber driver ;-). As time went on, he took on so much more than just driving me around. He became my walking, talking medication reminder, who came with me to all my doctor’s appointments and even kept my personal seizure diary updated. There isn’t a day that goes by without me hearing “Did you take your medication yet?” He is the only one who recognizes when I have a seizure or am having an unsettling day. He tolerates all the emotional ups and downs that come with seizure medication; irritation, anger, sadness, etc. (Kepprage, as some of my fellow epi friends might know). If I am too fatigued, he makes sure our life clocks on as normal; even if it is after a long day at work. He often sacrifices his own sleep, so I can sleep better. This was especially true when we had our daughter. I am probably one of the few moms who can say I slept beautifully after I had my baby because guess who did the night feedings, Dad! And he went to work in the day too! He alters his schedule to make sure he can drive our daughter to and from school, to doctors’ appointments, to weekend activities and more. He takes the time to help out with all the household chores and even backs me up in supporting my own family. Over the last few years, as I have worked through my illness and career goals, he has joined me on the ride as a calm presence, always making sure he is there to catch me if I fall. In spite of having all of this on his plate, he never fails to make us feel special, whether it’s a birthday, anniversary or a personal accomplishment. I always cherish the card and bounty chocolate I get any time we celebrate a special occasion! He is the best Dad and husband, and looks after us even more than he looks after himself (the latter of which I have to literally impose on him and remind him of on a regular basis). And while some people would say these are just normal things partners should do for each other, I think in situations of illness and disorders, caregivers go above and beyond than what is normal, so we don’t feel the pain we go through. Several people have told me that I am lucky to have a partner that has stayed by my side even after my diagnosis; apparently it’s not always the case. And although we don’t think of it that way and I would do exactly the same for him, over time I have learned to be grateful for him. Through all our struggles with coming to terms with my diagnosis and finding our new normal, I think we have found a new appreciation for each other that is beyond what we would have experienced if it were not for epilepsy. #### Ten years and counting So as we celebrate our 10 year anniversary this year, I wanted to dedicate this post to my personal care”giver” and say “I, take you Rex to be my husband all over again. I thank you for being true to your promise and for loving me in good times and especially in bad, through my sickness and when I was in good health. I’m gonna love you forever….forever and ever, Amen. Happy Anniversary and happy Father’s Day.” For all of us that have partners, parents, kids, siblings, family, friends, who are like family that look after us, we need to always remember that they are true warriors who watch over us every single day. And as we continue to spread our message about epilepsy in all its glory, let’s not forget to care for our care”givers” and celebrate them too. --- **NEXT UP:** Be sure to check out the next post tomorrow at [www.epilepsydad.com](http://epilepsydad.com). For the full schedule on bloggers and more on epilepsy awareness, visit . ![author avatar](https://secure.gravatar.com/avatar/f6535725de25800c8a7ff6a66865e348431b6bc12d2c709f76f95367bbcdf879?s=300&d=mm&r=g) Shonet Dsouza I am a passionate advocate for diversity and inclusion, a public speaker, blogger and guest contributor, working towards increasing awareness on issues around invisible disabilities. I facilitate and engage conversation across various organizations, government bodies, universities, and the general community. I am an Ambassador at Epilepsy Toronto and Global Epilepsy Exchange and a member of the United Way Speakers Bureau. I work as a Talent Strategist with Powerhouse Talent Inc. assisting organizations with talent attraction, developing their employer brand and recruitment marketing strategy. [See Full Bio](https://livingwellwithepilepsy.com/author/shonetdsouza) [ ](https://livingwellwithepilepsy.com/author/shonetdsouza) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/shonet.dsouza) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://twitter.com/shonetdsouza) **Categories:** Epilepsy Stories, Jun 19 EBR Posts --- ### [Epilepsy Blog Relay: Epilepsy in the Outback](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-blog-relay-epilepsy-in-the-outback.html) **Published:** June 16, 2019 **Author:** Billee O’Grady **Excerpt:** Billee grew up in a small mining town in the Western Australia Pilbara, The Outback. She was diagnosed with epilepsy at the age of four. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/05/1f1de059-e841-4437-8891-1d3c9f6648c5-e1560644216749-300x222.png "1f1de059-e841-4437-8891-1d3c9f6648c5 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=20936)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** #### Billee’s Story Hello everybody, my name is Billee. This is my first attempt at writing a blog, so bear with me. I grew up in a small mining town in the Western Australia Pilbara. The Outback. I was diagnosed with epilepsy at the age of four. #### Diagnosed with epilepsy My mum and I were holding hands walking down the road, when I went limp, collapsed and had my first seizure. Now, because we lived in such a small town and there was a lack of medical practitioners, I was asked to blow up balloons. It wasn’t until many years later that I realized, I was blowing up balloons to gauge and effectively induce seizures. #### Medication side effects The medication started at the age of five. Epilem (sodium valproate) was one of the more effective medications, but after a while my hair started to fall out and my gums started to bleed. At the time, it was the only thing stopping my seizures. So, I became the “sick kid” of the town. If that wasn’t enough, I was short, chubby, balding, had bad teeth, asthma and the name Billee. Needless to say, I was bullied. It is suspected that stress and overexertion caused many of my seizures. I was not the favourite in my faction when it came to school carnivals. In fact, when swimming the 40 meter breaststroke for my faction carnival, I had to stop halfway and get out of the pool. It wasn’t until many years later I got recollections of the sighs when I got called up to compete. At the age of 13, I moved to the city with my Mum and sisters. We weren’t there long before moving back to the Outback. When I left for the city I was short, chubby and would drop at the slightest jog. When I returned, I was tall, blonde and could run as fast as the wind. I won my first running race that year. After a while I moved back to the city and have since been somewhat of a guinea pig for many medications. Some that make me tired, some that keep me awake. Some that make my guts churn, and others that stop my bowel movements. Finally, I found one that works with minimal side effects…or so I thought. #### A surprising side effect I have been taking Lamotrigine for a few years now. More specifically, Lamictal. It works great, except, I have lost my short term memory. Which in turn, is stopping me from making new memories. I seldom remember what I did yesterday or even an hour ago. Does anybody else have this issue? If so, can you please help me? I do crosswords and try riddles. It’s hard for me to read books because I’m constantly rereading. Recently I was lucky enough to be able to go on a tour around Europe for a month. The downside is, if it wasn’t for the photographs, I wouldn’t remember majority of the trip. The silver lining is things can be a surprise more than once. It would be great to make new memories and keep them. I will always remember that running race though, and still to this day, I steer clear of balloons. --- **NEXT UP:** Be sure to check out the next post at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com) for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) posts you may have missed. ![author avatar](https://secure.gravatar.com/avatar/fb91e38d2dac20a8904f6fdb38ae6c841499caf89da769308711a2b4e1bbe3fe?s=300&d=mm&r=g) Billee O’Grady [See Full Bio](https://livingwellwithepilepsy.com/author/billee) [ ](https://livingwellwithepilepsy.com/author/billee) **Categories:** Epilepsy Stories, Jun 19 EBR Posts --- ### [Epilepsy Blog Relay: The impact of an epilepsy diagnosis](https://livingwellwithepilepsy.com/epilepsy-stories/stigma-and-an-epilepsy-diagnosis.html) **Published:** June 14, 2019 **Author:** Guest Contributor **Excerpt:** Maxine shares how she was placed in Kingseat Hospital and told she was mad due to her epilepsy diagnosis. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/03/my-photo-e1560290573924-265x300.jpeg "my-photo – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=20086)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** #### Maxine’s Story I was diagnosed with epilepsy when I was 14 years old. My seizures were tonic-clonic (grand mal) and I was having up to 2 seizures a month. Because of my diagnosis, my life was changed forever. I missed all the great things that a young woman of my age should have enjoyed. A lot of this due to the sentiment toward people with epilepsy at the time. I had my first baby at 21 years and was told that I could not bring up my baby and was not able to be a mother. All I wanted was to be a mother and have someone to love. #### Stigma and an Epilepsy Diagnosis I was then placed in [Kingseat Hospital](http://www.asylumprojects.org/index.php/Kingseat_Hospital) and told I was mad due to my epilepsy. I was very frustrated and angry, yes, as no one wanted to listen or hear me, but definitely not mad. At the time, one doctor told me that I should not be allowed to have children. He said, in his country I would have had my cords cut and tied whether I liked to or not. I had my second baby in 1984, and I certainly had become older and wiser. But, I still have epilepsy so by children were educated about it as they grew up. Then, in 1993, my husband died in a drowning accident and I was left to bring up my children on my own. I had no drivers license due to my epilepsy and so would need to hitchhike to work just to put food on the table. Then, In 1998, I had a serious accident where I burnt myself in boiling water due to have seizure. This caused 3rd degree burns to 50% of my body putting me in hospital for the next 6 months. Luckily my children and I had the great support of family and friends. I lost my license many times due to having a seizure and that meant I lost my job. The list of how epilepsy has affected my life could go on and on. > Even still my attitude has always has been, where there is a will, there is a way. --- **Related: Participate in one of our surveys** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/05/Share-your-experience-300x300.png "Share your experience – Living Well With Epilepsy")](https://www.surveymonkey.com/r/XW7YDJ6) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/05/Epilepsy-and-Stigma-Survey1-300x300.png "Epilepsy and Stigma Survey(1) – Living Well With Epilepsy")](https://www.surveymonkey.com/r/HR79ZYN) I am now 64 and my life skills are enormous but I am still fighting to be considered for my valuable skills and experience for a position in the work place other then a support worker. I have lived in poverty all my life due to my disability and have to say I am used to it but now I am reaching retirement age I am finding it very scary. I work in domestic violence now and although I like my job I can only seem to get the lowest paid. Yet, I have not had a seizure since 2004. Over the years I have worked so hard to make up for the lost moments. I am now full time working but still looking for that special job that I may be able to give back to my community. --- **NEXT UP:** Be sure to check out the next post at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com) for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) posts you may have missed. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Jun 19 EBR Posts --- ### [Epilepsy Blog Relay: A reminder that we need to stay strong](https://livingwellwithepilepsy.com/epilepsy-stories/we-need-to-stay-strong.html) **Published:** June 13, 2019 **Author:** Peter Eleftheriou **Excerpt:** After 40 years of living with epilepsy Peter reminds us that we need to stay strong and not be afraid to tell others about our disease. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/06/228252_6538767342_3095_n-300x225.jpg "228252_6538767342_3095_n – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=21092)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** After 40 years of living with epilepsy Peter reminds us that we need to stay strong and not be afraid to tell others about our disease. #### Peter’s Story Hello my name is Peter and I’ve had [epilepsy](https://livingwellwithepilepsy.com/start-here) since the age of 14 years old. I am now 54 years old I’ve been living with epilepsy practically, my whole life. I want to encourage all the people who have epilepsy be strong don’t be afraid to tell others that you have epilepsy. I’ve worked in construction and as a butcher, and now I’m working as a cook. We who have epilepsy are just as normal as the next person. To all who have epilepsy: remember you are strong. Thank you for listening to me. --- **Related: Participate in one of our surveys** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/05/Share-your-experience-300x300.png "Share your experience – Living Well With Epilepsy")](https://www.surveymonkey.com/r/XW7YDJ6) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/05/Epilepsy-and-Stigma-Survey1-300x300.png "Epilepsy and Stigma Survey(1) – Living Well With Epilepsy")](https://www.surveymonkey.com/r/HR79ZYN) --- **NEXT UP:** Be sure to check out the next post at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com) for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) posts you may have missed. ![author avatar](https://secure.gravatar.com/avatar/5008d3aa2fab3af1d7e12cee2338473095f75716c5ba4574a4c8c2728285dd31?s=300&d=mm&r=g) Peter Eleftheriou [See Full Bio](https://livingwellwithepilepsy.com/author/peterriou) [ ](https://livingwellwithepilepsy.com/author/peterriou) **Categories:** Epilepsy Stories, Jun 19 EBR Posts --- ### [Epilepsy Blog Relay: Don't let fear stop you from sharing your epilepsy story.](https://livingwellwithepilepsy.com/epilepsy-stories/when-fear-keeps-you-from-sharing-your-epilepsy-story.html) **Published:** June 10, 2019 **Author:** Heidi Shafer **Excerpt:** Heidi reminds us that sharing an epilepsy story with others no matter how afraid you are will help fight against the stigma. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/05/43099029_1907804875976100_8120917201134813184_n-1-300x300.jpg "43099029_1907804875976100_8120917201134813184_n-1 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=20954)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** I’m Heidi and I have found that the world has so much to learn about epilepsy, so I started The Epilepsy Education and Support page on facebook to help spread epilepsy awareness. It’s important to educate and support each other when we or someone we know faces epilepsy. My post for the June relay is about sharing your story with others no matter how afraid you are. Sharing it will help fight against the stigma. #### Raising Awareness Epilepsy Education and Support was created to provide information and support for people with Epilepsy, caregivers and those who are interested in Epilepsy all over the world. [Read Heidi’s Story ](https://www.facebook.com/Epilepsy-Education-and-Support-555528831203718/) --- **NEXT UP:** Be sure to check out the next post by Alison at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com) for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) posts you may have missed. ![author avatar](https://secure.gravatar.com/avatar/a94bb9ed5f470e9a7aa7b0c07d6d92c7829cfd9043f06de1999cd7e2ed1d0882?s=300&d=mm&r=g) Heidi Shafer I have been living with uncontrolled seizures for 40 yrs. I am the mother of 2 wonderful boys and married to a wonderful husband. I am the administrator of the Epilepsy Education and Support Facebook and twitter page. [See Full Bio](https://livingwellwithepilepsy.com/author/heidishafer123) [ ](https://livingwellwithepilepsy.com/author/heidishafer123) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/Epilepsy-Education-and-Support-555528831203718/) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://twitter.com/EpilepsyEES) **Categories:** Epilepsy Stories, Jun 19 EBR Posts --- ### [Epilepsy Blog Relay: Diagnosed with Epilepsy as an Adult](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-as-an-adult.html) **Published:** June 9, 2019 **Author:** Guest Contributor **Excerpt:** She thought epilepsy was something that manifested itself early in life. However, at 56 Julian found herself diagnosed with epilepsy as an adult. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/04/4e811d40-2a73-47bd-8551-83fef0f3060e-300x300.jpeg "4e811d40-2a73-47bd-8551-83fef0f3060e – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2019/epilepsy-blog-relay/jun-19-ebr-posts/epilepsy-as-an-adult.html/attachment/4e811d40-2a73-47bd-8551-83fef0f3060e)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** #### Julian’s Story There I was – in my dream job at the State Department of Education. I was 56 years old and enjoying the travel around the state, collaborating with various school districts, conducting training sessions, and moving freely between counties. I’ve always loved driving! I had to take medical leave for shoulder surgery. Driving home with my four-year-old grandson in the back seat, I took a bite of a just purchased sandwich. About four minutes later I asked, “Where were we going?” He said “To your house Yaya.” I had missed my turn onto my street by a mile! A month later, after returning to work, I again had an instance after stopping for lunch then getting back in the car to complete my travel. My life as I knew it would never be the same. --- **Related: [Diagnosed later in life](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/mar-18-ebr-posts/epilepsy-blog-relay-diagnosed-epilepsy-later-life.html)** --- #### Perceptions about epilepsy I thought epilepsy was something that manifested itself early in life. I thought it was something that ran in families. Here I am three years later still waiting to go six months without an incident. I miss the freedom of driving, I miss the smiling faces at school districts around the state, but I am thankful to still be here. I look forward to being six months seizure-free. Maybe I can drive long distances again!!! I am learning to live with my new normal. [Share Your Story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) --- **NEXT UP:** Be sure to check out the next post by Heidi at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com) for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) posts you may have missed. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Jun 19 EBR Posts --- ### [Epilepsy Blog Relay: Maintaining Work Life Balance with a Chronic Illness](https://livingwellwithepilepsy.com/epilepsy-stories/maintaining-work-life-balance-with-a-chronic-illness.html) **Published:** June 9, 2019 **Author:** Jewel Gibson **Excerpt:** In Jewel's article on maintaining work life balance with a chronic illness she writes, "Whoever said work life balance existed lied!" **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/06/7DDE4B83-CF87-4837-AD59-8CB3202200C8-300x200.jpeg "7DDE4B83-CF87-4837-AD59-8CB3202200C8 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/um_user_photos/jewel-2/attachment/7dde4b83-cf87-4837-ad59-8cb3202200c8)This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** #### Work Life Balance Whoever said work life balance existed lied! I believe there should more of a push to achieve harmony in ones life. Throughout the day we are being pulled in a thousand directions and asked to do a thousand varying things. But are we getting it all done? and at what cost? Creating work life balance is something we all struggle with daily. At some point in the week, for me it’s the day, I feel like I’m failing at something. Other days I feel like I’m failing at EVERYTHING! #### About Jewel Davis I have a seizure disorder that I have navigated for roughly 11 years. One day, I was living a typical early twenty lifestyle then the next I was laying in a hospital bed recovery from my first seizure. Fast forward to current day, where I am learning to juggle the millions of things I do daily in conjunction to maintaining my health. Which is extremely difficult when you have a chronic illness because life can be unpredictable. [Read Jewel’s Story ](https://lifesajewel.com/maintaining-work-life-balance-with-a-chronic-illness/) --- **NEXT UP:** Be sure to check out the next post by Julian at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com) for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) posts you may have missed. ![author avatar](https://secure.gravatar.com/avatar/c1aba6d0d67a384b767cb68f59c824d135de8a13aaafee6f345a2f92f10de560?s=300&d=mm&r=g) Jewel Gibson Jewel Gibson, fondly known as "Life's a Jewel," is an epilepsy advocate, an educator, avid reader, plant lover, city girl and all around great momma and wife. [See Full Bio](https://livingwellwithepilepsy.com/author/jgib) [ ](https://livingwellwithepilepsy.com/author/jgib) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/lifesajewel) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](https://www.twitter.com/lifesajewel_) **Categories:** Epilepsy Stories, Jun 19 EBR Posts **Tags:** work life balance --- ### [Epilepsy Blog Relay: Vitamins and epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/vitamins-and-epilepsy.html) **Published:** June 7, 2019 **Author:** Leila Shields **Excerpt:** Vitamins are important for people with epilepsy to maintain calcium absorption and strong bone growth, manage drowsiness, and keep a healthy immune system. **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/03/IMG_20141126_134530-300x300.jpg "IMG_20141126_134530 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/leilas-ideas/epilepsy-blog-relay-epilepsy-isnt-my-only-story.html/attachment/img_20141126_134530)This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** Does anyone else take vitamins to help with seizures? I take them for my migraines but also for the side effects from my medications. There are times that I am out of them for a day or two but I always pick right back up. I recently ran out of my Vitamin D and kept forgetting to purchase more. It was a bad move. #### Why take vitamins Some of the health benefits of Vitamin D include: calcium absorption and strong bone growth, less drowsiness and increased energy, lowered risk of chronic diseases, and keeping a healthy immune system. Due to my diagnosis, the need for a healthy immune system and increased energy is essential to my daily functioning. Another part of the reason I take Vitamin D is because I live in Pennsylvania. If you know anything about it here, you know that the sun is pretty much absent during winter. It snowed the last week of April. That means our sun was limited from November-May. The sun hitting your skin is a natural way to get your vitamin D. Since I don’t see the sun often, I need a supplement (this is prescribed by my doctor). Getting that Vitamin D may also help keep your mood up–something I need with my Keppra-tude! #### Now I know It didn’t occur to me how important taking the vitamin was. I knew it needed to be part of my routine and I knew it has benefits. Still, I wasn’t as alarmed as I should have been when I ran out. When I stopped for a couple of weeks, I noticed I was tired a lot more. I mean, exhausted. I could fall asleep immediately after putting my head down (sometimes it didn’t even take that). My epilepsy meds make me very tired and I forgot just how bad it was. This served as a reminder to me that I need to listen to my doctor, take my medications as prescribed, and remember that my epilepsy is still here and needs my diligence. --- **NEXT UP:** Be sure to check out the next post by Jewel at [lifesajewel.com](http://lifesajewel.com) for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) posts you may have missed. ![author avatar](https://secure.gravatar.com/avatar/4cebf381fbce646cb0dbabef2348282b941c67524a3f03f08d6e328fa6c976cb?s=300&d=mm&r=g) Leila Shields Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania. [See Full Bio](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/leila.zorzie) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://lzorzie) **Categories:** Epilepsy Stories, Jun 19 EBR Posts --- ### [Epilepsy Blog Relay™: Alison is shedding light on stigma](https://livingwellwithepilepsy.com/epilepsy-blog-relay/alison-is-shedding-light-on-stigma.html) **Published:** November 28, 2017 **Author:** Alison Zetterquist **Excerpt:** It's up to us, through open discussions and teaching others, to change the perceptions about epilepsy, do away with the stigma. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/05/Facebook-photo-2-300x200.jpg "Facebook photo – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/facebook-photo-3)Day 28 of the Epilepsy Blog Relay™ Today’s post comes from Alison Zetterquist who writes [ShedLightonEpilepsy](http://shedlightonepilepsy.blogspot.com/). #### From Alison I’ve been blessed with being able to control my tonic-clonic seizures via meds. But, because of stigma, I hid my condition for 36 years. Finally, tired of hiding, I began opening up, choosing moments to tell people about my epilepsy. It’s up to us, through open discussions and teaching others, to change the perceptions about epilepsy, do away with the stigma. [Read Alison’s Post ](http://shedlightonepilepsy.blogspot.com/) --- NEXT UP: Be sure to check out the next post tomorrow by Jade at . For the full schedule of bloggers visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/). TWITTER CHAT: And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fcaf09bfa8329b343119c3e29e90cf3480dff78058bd75eb6c930f16cdab99ab?s=300&d=mm&r=g) Alison Zetterquist [See Full Bio](https://livingwellwithepilepsy.com/author/alisonzetterquist) [ ](https://livingwellwithepilepsy.com/author/alisonzetterquist) **Categories:** Epilepsy Blog Relay, Nov 17 EBR Posts --- ### [Epilepsy Blog Relay: Alison on building your family when you have epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/guest-posts/alison-on-building-your-family-when-you-have-epilepsy.html) **Published:** March 16, 2019 **Author:** Alison Zetterquist **Excerpt:** Blogger, Alison Zetterquist, hid her epilepsy for almost 35 years because of her own embarrassment. Now she shares tips on building a family of supporters. **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/12/Blonde-1-225x300.jpg "Blonde-1 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/blonde-1)This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) which will run from March 1 through March 31. Follow along!*** #### About Alison’s Blog [Shed the Light on Epilepsy](http://www.shedlightonepilepsy.org) was born from a passion to fight the stigma that surrounds epilepsy. Blogger, Alison Zetterquist, lived in hiding for almost 35 years because of her own embarrassment about her epilepsy. Then, one day, she realized that if people with epilepsy don’t begin opening up about it, the stigma – culturally based and a product of ignorance – will never end. So, she started telling people and was amazed at how many took it in stride. Her blog covers a good deal of ground about stigma and how to talk about it. And, as it aged, Alison began branching out into other topics about epilepsy and featuring guest blogs from Shan O’Meara. With luck, you’ll find a few that will speak to you. #### Alison’s latest post The newest post, “[Building Your Family When You Have Epilepsy](http://www.shedlightonepilepsy.org)” is about our ability to shape the “family” we have to fall back on for support. It explores what a family really is and suggests understanding our needs for different kinds of reinforcements depending on the situation at hand. Is it physical or emotional? And if the latter, do you want someone who will empathize or someone who will help you solve whatever troubles you? Do you need rides, food, or other sustenance if stuck at home – and, for that matter, must you rely on family to get them? And what do you do to support them? In essence, the article is about determining what you’re having difficulty doing on your own and figuring out how to grow your extended family to help you find solutions with people you love. [READ MORE ](http://www.shedlightonepilepsy.org) --- ***NEXT UP:*** Be sure to check out the next post by Michael at [livingwellwithepilepsy.com ](http://livingwellwithepilepsy.com)for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay posts](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) you may have missed. [Share your story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://secure.gravatar.com/avatar/fcaf09bfa8329b343119c3e29e90cf3480dff78058bd75eb6c930f16cdab99ab?s=300&d=mm&r=g) Alison Zetterquist [See Full Bio](https://livingwellwithepilepsy.com/author/alisonzetterquist) [ ](https://livingwellwithepilepsy.com/author/alisonzetterquist) **Categories:** Family, Guest Posts, Mar 19 EBR Posts --- ### [Epilepsy Blog Relay: What does it mean to be seizure-free](https://livingwellwithepilepsy.com/epilepsy-stories/what-does-it-mean-to-be-seizure-free.html) **Published:** June 6, 2019 **Author:** Alison Zetterquist **Excerpt:** Alison takes on the topic what it means to be seizure-free for years and how to deal with epilepsy-related stigma. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/05/fullsizeoutput_3fb-267x300.jpeg "fullsizeoutput_3fb – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=20961)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** [Shed the Light on Epilepsy](http://shedlightonepilepsy.org) was born of a passion to fight the stigma against epilepsy. Alison Zetterquist, its blogger, lived in hiding almost 35 years because of her own embarrassment (read: self-inflicted stigma) about her epilepsy. Then, one day, she realized that if people with epilepsy don’t begin opening up about it, the stigma – culturally based and a product of ignorance – will never end. So, she started telling people and was amazed at how many took it in stride. Her blog covers a good deal of ground about stigma and how to talk about it. And, as it aged, Alison began branching out into other topics about epilepsy and featuring guest blogs from Shan O’Meara. With luck, you’ll find a number that will speak to you. --- **Related:** [**Suicide and the stigma of epilepsy**](https://livingwellwithepilepsy.com/2018/aboutepilepsy/stigma/suicide-and-the-stigma-of-epilepsy.html) --- In her newest post, “Seizure-Free: Counting the Years,” she examines the implications behind being a certain number of months or years seizure-free and the social media notices rejoicing in it. In doing so, she highlights the hope, (sometimes false) sense of achievement, and opportunities for spreading epilepsy awareness that come from being able to distance oneself further and further from his or her last seizure. [Read more by Alison ](http://shedlightonepilepsy.org) --- **NEXT UP:** Be sure to check out the next post by Leila at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com) for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) posts you may have missed. ![author avatar](https://secure.gravatar.com/avatar/fcaf09bfa8329b343119c3e29e90cf3480dff78058bd75eb6c930f16cdab99ab?s=300&d=mm&r=g) Alison Zetterquist [See Full Bio](https://livingwellwithepilepsy.com/author/alisonzetterquist) [ ](https://livingwellwithepilepsy.com/author/alisonzetterquist) **Categories:** Epilepsy Stories, Jun 19 EBR Posts --- ### [Epilepsy Blog Relay: Advocating for a non-verbal child](https://livingwellwithepilepsy.com/epilepsy-stories/advocating-for-a-non-verbal-child.html) **Published:** June 4, 2019 **Author:** Jennifer Lounsbury **Excerpt:** Jen knew something had changed drastically with Colleen's health, but she had no answers. Jen shares tips for advocating for a non-verbal child. **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/03/img_5909-300x300.jpg "img_5909 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/epilepsy-blog-relay-that-one-time-where-its-okay-to-be-a-helicopter-parent.html/attachment/img_5909-2)This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** #### Trusting mother’s intuition Since the end of last summer, I knew something had changed drastically with my daughter’s health, but between her pediatrician and neurologist, there were no answers as to why. In June 2018, right before the end of Colleen’s school year, I was constantly getting videos of her walking unassisted. It was a truly amazing thing to see (Colleen has both cerebral palsy and epilepsy.) But after we came back from a trip to Disney, she really struggled to get back into the swing of school. A week didn’t go by where she didn’t have to come home, either because she didn’t have the stamina to stay in school or because she was having too much seizure activity to be able to stay focused. I knew something had to be done. #### Advocating for a non-verbal child This is just one area where Colleen needed an advocate. She can’t tell us what’s wrong, so it’s up to us to make sure she’s taken care of. As her parent, I’ve become pretty good at anticipating her needs and she’s starting doing things, like going to her seat in the kitchen when she’s hungry. But when it comes to her health, things have been a lot more difficult. We have bounced back and forth between taking her to her pediatrician, making sure all her blood-work is fine or there’s not an ear infection or something that she can’t communicate, to calling her neurologist to see if we could adjust her medication. We love her neurologist now, but there was a point from before we switched where we had to beg them to help her and even to get some basic blood work done to check her medication levels. These are the cases where you (or even for yourself) where you become your child’s best advocate. I’d like to say all doctors are amazing, but it seems that some are not as interested in trying to help figure out what’s going on. Don’t be afraid to look elsewhere and seek answers. Sometimes it takes really listening to your gut and not taking no for an answer to do what’s right for your loved one. --- **Related:** [**Tips on switching neurologists**](https://livingwellwithepilepsy.com/diagnosis) --- #### Balancing side effects with seizure control We are now better health-wise than where we were last winter. Colleen has been seizure free for two months, but it’s a hard balance between seizure control and side-effects. She is on Depakote sprinkles and a pretty small dose of Onfi. The Onfi is what is stopping her daily-seizures/myoclonic jerks, but at what point do you say that the side-effect isn’t worth it? Surely, there has to be something better? I am at that point where I’d like to see if there was something else, but she’s made so much progress again. She’s been walking unassisted through the house. She’s mostly happy, but I can tell she just isn’t herself. She is just sad. A lot. Our hope is now that somewhere out there, there is a medication that won’t have such severe side-effects. #### Your turn What are your experiences with side-effects? Have you ever had great seizure control but other things happen? It’s such a struggle! [Share your story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) [Read more by Jen ](https://timetobuildcastles.wordpress.com/) --- ***NEXT UP:** Be sure to check out the next post from the team at Epilepsy Awareness Day at Disney Land at [livingwellwithepilepsy.com ](https://livingwellwithepilepsy.com)for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay posts](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) you may have missed.* ![author avatar](https://secure.gravatar.com/avatar/2d7fe6c0eded69888607fe806fbe9bc4b4f814de382f989b182dab6125aed61c?s=300&d=mm&r=g) Jennifer Lounsbury CP/Epilepsy Advocate. Photographer and designer. “Courage, dear heart.” [See Full Bio](https://livingwellwithepilepsy.com/author/jennylouns) [ ](https://livingwellwithepilepsy.com/author/jennylouns) **Categories:** Cerebral Palsy and Epilepsy, Epilepsy Stories, Jun 19 EBR Posts --- ### [Epilepsy Blog Relay: My Journey to Seizure Control](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-journey-to-seizure-control.html) **Published:** June 2, 2019 **Author:** Whitney Petit **Excerpt:** Whitney share info on her journey to thriving in everyday life while managing epilepsy, self-care and behind the scenes of my advocacy work. **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/05/whitney-p-65-copy18-205x300.jpg "whitney-p-65-copy18 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=21022)This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay)***. Follow along all month!*** Whitney Petit is an Epilepsy Blogger and Patient Advocate. Diagnosed with Epilepsy as an infant, she uses her 30+ years of experience with the condition, to assist others in their fight. Whitney started her blog, [Changing Focus: Epilepsy](http://www.cf-epilepsy.com/), to help patients identify seizure triggers, find ways to improve their quality of life with epilepsy, and focus on self-care in the process. With a B.S. in Information Systems Security, Whitney uses her technical skills and knowledge to help drive innovation for patients in her community. This allows her to collaborate with companies and give the patient perspective, while still working to bring tools that will be beneficial to all. #### Instagram Takeover For this year’s LWWE June takeover, I’ll be focusing on thriving in everyday life while managing epilepsy, self-care and behind the scenes of my advocacy work. Be sure to check out the new blog on June 2nd “[My Journey to Seizure Control](http://www.cf-epilepsy.com/)” – “For years I struggled with managing my seizures. It was breakthrough after breakthrough and just chaos at some points. I knew I had to do more. It wasn’t just up to my doctors and medication. It rests on my shoulders to gain control.” [Read Whit’s Article ](http://www.cf-epilepsy.com/) #### Check out the takeovers this month [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/05/June-IG-Takeover-Header-11.jpg "June IG Takeover Header 1(1) – Living Well With Epilepsy")](https://www.instagram.com/livingwellwithepilepsy/) --- ***NEXT UP:** Be sure to check out the next post by Soo at [livingwellwithepilepsy.com ](https://livingwellwithepilepsy.com)for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay posts](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) you may have missed.* [Share Your Story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://secure.gravatar.com/avatar/13683cea3a9c0d5cc5a1f85fe87c891b4e8a666374942e9f00d375220d9131da?s=300&d=mm&r=g) Whitney Petit [See Full Bio](https://livingwellwithepilepsy.com/author/cfepilepsy) [ ](https://livingwellwithepilepsy.com/author/cfepilepsy) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://www.twitter.com/cfepilepsy) **Categories:** Epilepsy Stories, Jun 19 EBR Posts --- ### [Epilepsy Blog Relay: Colleen takes on cerebral palsy and epilepsy with a smile](https://livingwellwithepilepsy.com/epilepsy-stories/colleen-on-cerebral-palsy-and-epilepsy.html) **Published:** June 7, 2018 **Author:** Jennifer Lounsbury **Content:** **[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/06/IMG_2875-300x300.jpg "IMG_2875 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/jun-18-ebr-posts/colleen-on-cerebral-palsy-and-epilepsy.html/attachment/img_2875)This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from June 1 to June 30, 2018. Follow along!** #### **The beginning** After Colleen’s birth and being transferred to a nearby hospital’s NICU, we got the phone call that she had had two very big seizures and would need a blood transfusion. Colleen spent several days on a cooling mat, keeping her body temperature low as she tried to recover. We couldn’t even rub her skin in comfort as the nurses said that it might trigger a seizure. I was afraid to touch my baby in fear I might set something off. (For a little explanation, Colleen had a blood infection and a subdural hematoma. Her body was going through so much when she was first born.) Thankfully, she was released about 20 days later, and we went home with medication to keep her seizures under control. And the meds did! At follow-up neurologist appointments, we were told that she would likely grow out of them. Her[ EEG](https://livingwellwithepilepsy.com/2015/aboutus-lwwe/emilys-perspective/emilys-perspective-help-child-eeg.html)’s (an electroencephalogram, a test that detects electrical activity in your brain) always showed significant activity, and even silent seizures. This meant that while she was technically having a seizure, physically, we couldn’t tell. At one point when it was caught, she only stopped playing with a toy for a short second, and then went back to playing. I held out so much hope that at each EEG, we would see an improvement and that maybe, one day, we wouldn’t see any more seizures. #### **A big change** After work one day when she as 2, I went to pick up Colleen from her sitters and knew she wasn’t acting right. She felt very heavy to pick up, in a way that her whole body felt limp. I drove home, watching in the rear-view as she just stared upwards. When I got some, I noticed she would continue these staring spells and her eyes would very rapidly blink. I called the neurologist. Up until that point, I had no idea what a seizure would look like, and it was surprising to learn that there were many different kinds. Over the years, we’ve had a few different doctors (her 1st that we loved moved to Texas) and a number of different medications. I fear with a lot of meds, it’s a [delicate balance](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/jun-18-ebr-posts/living-with-side-effects.html) between Colleen being able to function normally and controlling the seizures. It a very fine and frustrating line to walk. I remember at one point, after coming off of one medication, her teachers remarked at just how much more energy she had. It was a sad moment [as a mother](https://livingwellwithepilepsy.com/2018/livingwell/mothers-day/special-thanks-for-mothers-day.html) to know just how much she was being held back by medication but knowing it’s something she absolutely *needs.* She’s had a few seizures over the past few years, at one point, they were occurring about once a week. These were the ones that we could *see*. And they were scary. I kept thinking to myself, “What happened? She was doing so well!” And still, quite frankly, the changes she’s had over the years is not something I understand completely. **Figuring out the future** Colleen is currently 6.5, and her biggest concern with seizures is her daily myoclonic jerks. She’s had a few which have led to injury. We had to take a trip to the ER recently to see if she would need stitches under her eye (thankfully, not!). No one wants to see their child struggle, and as a mother, I am committed to helping her as much as I can. We’ve looked into the possibility of a seizure-response dog and even the use of CBD oil. In July, Colleen is having a second stem cell therapy treatment. While this treatment is for her cerebral palsy, I’ve read a few things in which it can help seizures. Colleen has made significant improvements in mobility after her first treatment, and we have so many videos from her teachers at school of Colleen walking without use of her walker. Just her AFO’s (ankle and foot orthosis). While she had a neurologist appointment about a week after her first treatment, we weren’t told there was any improvement in the number of spikes on her EEG. After her second treatment, I will be excited to take her to her next appointment and know whether or not they have decreased. There’s no doubt that there have been many challenges over the last few years, and it is something I wish I could take on instead of Colleen. But there’s no doubt that [she’s a fighter](https://livingwellwithepilepsy.com/2016/epilepsy-blog-relay/its-who-i-am.html) and has been so strong over the years. With medical advances and new studies, I can only hope that as the years go by, her quality of life in dealing with epilepsy will only improve! Read more from Jennifer at: --- **NEXT UP:** Be sure to check out the next post by Whitney at . **TWITTER CHAT:** Save the date for the #LivingWellChat on June 30 at 7PM ET. [![epilepsy blog relay](https://livingwellwithepilepsy.com/wp-content/uploads/2018/05/june-2018-social-EBR1-150x150.png "june 2018 social EBR(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-participants/attachment/june-2018-social-ebr1)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our [generous sponsors and partners](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-sponsors-and-partners)! [Participate as a November Blogger ](http://bit.ly/Nov18EBRForm) [Become a November Sponsor ](http://bit.ly/1819EBRMk) ![author avatar](https://secure.gravatar.com/avatar/2d7fe6c0eded69888607fe806fbe9bc4b4f814de382f989b182dab6125aed61c?s=300&d=mm&r=g) Jennifer Lounsbury CP/Epilepsy Advocate. Photographer and designer. “Courage, dear heart.” [See Full Bio](https://livingwellwithepilepsy.com/author/jennylouns) [ ](https://livingwellwithepilepsy.com/author/jennylouns) **Categories:** Cerebral Palsy and Epilepsy, Epilepsy Stories, Jun 18 EBR Posts **Tags:** cerebral palsy, eeg, epilepsy and, myoclonic, stem cells, subdural hematoma --- ### [Epilepsy Blog Relay: Whitney asks the hard questions about epilepsy clinical trials](https://livingwellwithepilepsy.com/epilepsy-stories/whitney-asks-the-hard-questions-about-epilepsy-clinical-trials.html) **Published:** June 8, 2018 **Author:** Whitney Petit **Content:** **[![](https://livingwellwithepilepsy.com/wp-content/uploads/2015/05/Whitney-Petit-300x300.jpg "Whitney Petit – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/portfolio/june-18-whitney-petit/attachment/whitney-petit)This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from June 1 to June 30, 2018. Follow along!** #### Whitney’s Story My blog, [Changing Focus: Epilepsy](http://www.cf-epilepsy.com/), is all about [taking control of your life](https://livingwellwithepilepsy.com/2018/personal-epilepsy-stories/living-with-side-effects.html) with epilepsy. I openly share my personal struggles and triumphs while providing tools to help you become your own best advocate for your health. Through this blog I want to show others that you can still live your best life, and how, despite the diagnosis. #### Excerpt from Whitney’s blog As technology and the advancement of patient care continues to move forward, a greater need grows for clinical trial participants and staff. Could the stigmatization against [Clinical Trials](https://livingwellwithepilepsy.com/epilepsy-clinical-trials) innovation, be holding us back from a possible cure for Epilepsy? I want to breakthrough the stigmas so that we can get more patients involved, move forward to better quality care and get the meds or technology needed to successfully diagnose and treat [epilepsy](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/mar-18-ebr-posts/epilepsy-blog-relay-epilepsy-isnt-my-only-story.html). [Don’t miss her latest post!](http://www.cf-epilepsy.com/) --- **NEXT UP:** Be sure to check out the next post by Emily at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com). **TWITTER CHAT:** Save the date for the #LivingWellChat on June 30 at 7PM ET. [![epilepsy blog relay](https://livingwellwithepilepsy.com/wp-content/uploads/2018/05/june-2018-social-EBR1-150x150.png "june 2018 social EBR(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-participants/attachment/june-2018-social-ebr1)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our [generous sponsors and partners](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-sponsors-and-partners)! [Participate as a November Blogger ](http://bit.ly/Nov18EBRForm) [Become a November Sponsor ](http://bit.ly/1819EBRMk) ![author avatar](https://secure.gravatar.com/avatar/13683cea3a9c0d5cc5a1f85fe87c891b4e8a666374942e9f00d375220d9131da?s=300&d=mm&r=g) Whitney Petit [See Full Bio](https://livingwellwithepilepsy.com/author/cfepilepsy) [ ](https://livingwellwithepilepsy.com/author/cfepilepsy) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://www.twitter.com/cfepilepsy) **Categories:** Epilepsy Stories, Jun 18 EBR Posts --- ### [Epilepsy Blog Relay™: Abby and That Terrible Reminder](https://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-abby-and-that-terrible-reminder.html) **Published:** March 18, 2017 **Author:** Abby Gustus-Alford **Excerpt:** Abby's Story: I was doing great. I hadn’t had a seizure in almost two years. But recently, I’ve changed my medicine. **Content:** ***[![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/03/Breck-300x225.jpg "Breck – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/?attachment_id=15482)This post is part of the This post is part of the [Epilepsy Blog Relay™](http://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-march-2017-participants) which will run from March 1 to March 31, 2017. Follow along!*** #### Abby’s Story Recently, I’ve changed my medicine. I’ve always been on Keppra and Lamictal, but at the end of last year, I went to see a new doctor. I absolutely love him and am so happy with my decision. He asked me basic questions about my health and the conversation quickly turned to some of the side effects that I feel like I have. To be completely honest, I’ve been on two medications for so long that I can’t really pinpoint any side effects. I did talk to him about memory problems and some word finding problems that I felt like I was having at work. He seemed to think that it may be a side effect of Keppra. After hearing that, I asked about moving to one medication… Lamictal. At the beginning of 2017, I started the transition. My dosage of Keppra slowly got lower as my dosage of Lamictal went up. Every other week, I went to get blood drawn to check my levels. After a month, my levels were sufficient and I was on one drug. During the transition, I didn’t really feel anything different. I felt like it was a great move for me. I was doing great. I hadn’t had a seizure in almost two years. And, I felt like I was where I needed (and wanted) to be… on one drug with limited side effects (for me). Well, sure enough, work started getting extremely stressful, and I was not getting much sleep. My husband and I took an impromptu vacation to try to get me away from the environment for a few days. It was a very relaxing weekend, and I felt like it worked. I came back feeling well rested. While I came back well rested and feeling relaxed, all of the same stresses were here waiting for me. Since then, I’ve been having terrible auras at night. It’s been super scary and all of the feelings of triumph and hope that I was feeling about epilepsy have temporarily left. I’ve been feeling really sad as the past two weeks have been that terrible reminder that epilepsy is still right there. I cannot let my guard down, and I have to continue to be very careful, because a seizure could happen at any moment. I knew it was affecting me, because I was recently at a meeting at the Epilepsy Foundation of Texas. As we introduced ourselves, for the first time in two years I was not, “I’m Abby, I started having seizures when I was 12 years old, but I’ve been seizure free for about two years.” I was, “Hi, I’m Abby, I’ve recently been struggling and have been having really bad auras at night.” When I uttered those words, I teared up. I had momentarily forgotten how hard those feelings are to have. But, there they were… again. I do hope in the next months I can just increase the dosage and stay on just one medicine, but that’s still to be determined. --- ***[![](http://livingwellwithepilepsy.com/wp-content/uploads/2015/05/Whitney-Petit-150x150.jpg "Whitney Petit – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/portfolio/june-18-whitney-petit/attachment/whitney-petit)NEXT UP: Be sure to check out the next post tomorrow by [Whitney Petit ](http://www.cf-epilepsy.com/)for more on epilepsy awareness. For the full schedule of bloggers visit*** [***livingwellwithepilepsy.com***](http://livingwellwithepilepsy.com/epilepsy-blog-relay)***.*** ***TWITTER CHAT: And don’t miss your chance to connect with bloggers on the [\#LivingWellChat ](http://twubs.com/livingwellchat)on March 31 at 7PM ET.*** ![author avatar](https://secure.gravatar.com/avatar/fc6da7355dbaf3b5333da396f069a80e1cb0f14ba7b3b3c9d7276454b2c67b50?s=300&d=mm&r=g) Abby Gustus-Alford Abby Gustus Alford was diagnosed with epilepsy at the age of 12 after multiple grand mal seizures over six-mos. She has a BA from Purdue and her Master’s from Northwestern. [See Full Bio](https://livingwellwithepilepsy.com/author/abby) [ ](https://livingwellwithepilepsy.com/author/abby) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://abbyg_alford) **Categories:** Epilepsy Blog Relay, Mar 17 EBR Posts, Side Effects **Tags:** Epilepsy Blog Relay --- ### [Epilepsy Blog Relay™: Miguel Cervantes of Hamilton Chicago tells his family's epilepsy story](https://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-miguel-cervantes-of-hamilton-chicago-tells-his-familys-epilepsy-story.html) **Published:** March 30, 2017 **Author:** Jessica K. Smith **Excerpt:** Miguel Cervantes, who plays A.Ham in Hamilton Chicago, shares his family's experience with Infantile Spasms and his hopes for his daughter. **Content:** [![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/03/IMG_20170214_123352916-300x225.jpg "IMG_20170214_123352916 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/epilepsy-blog-relay-miguel-cervantes-of-hamilton-chicago-tells-his-familys-epilepsy-story.html/attachment/img_20170214_123352916)***This post is part of the [Epilepsy Blog Relay™](http://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-march-2017-participants) which will run from March 1 to March 31, 2017. Follow along!*** #### Miguel’s Story [Miguel Cervantes](http://www.hamiltonbroadway.com/#chicago-cast) plays Alexander Hamilton in the Chicago production of the blockbuster musical, [Hamilton](http://www.hamiltonbroadway.com/#chicago). According to Variety, “The musicality of the actor’s voice is exceptional, and when he sings ‘I never thought I’d live past twenty’ in, ‘My Shot,’ the combination of consternation and earnest relief in his voice is hard to resist.” We are honored that Miguel has shared his family’s epilepsy story with the Living Well With Epilepsy readers. #### Adelaide and Infantile Spasms My daughter’s story began at 5 months. Her seizures started small and turned quickly into [Infantile spasms (IS)](http://www.childneurologyfoundation.org/disorders/infantile-spasms/). At the same time I was in final auditions for the role of Alexander Hamilton. Talk about an emotional roller coaster. We began the myriad of tests with no diagnosis or cause. All tests were negative. Our only course of action was to do what we could to treat the seizures. As you know, the drugs that are available are inconsistent at best. When the Dr. says, “We can TRY this one and it has these side effects. . .”, it does not give much comfort. This is where we are now. Still no cause. We have had some success with the ketogenic diet but she is still having seizures. Her development is very delayed and we have many hours of therapy a week. The frustrating part of this is that we don’t have any idea how to help or or if any of the current treatments will work long term. #### Infantile Spasms Infantile Spasms is a rare and severe form of epilepsy. IS typically occurs before one year of age and affects only 2,500 children in the United States. IS are often mistaken for startle reflex or colic, but are, in fact, a much more serious neurological condition. These seizures can also precede a diagnosis of [Lennox-Gastaut Syndrome](http://www.lgsfoundation.org/is) in 20% to 62% of cases. #### Research for the Future My wife and I have partnered with [CURE](http://www.myshotatepilepsy.org/), Citizens United for Research in Epilepsy because I am of the mind that we need to do everything we can to eradicate the seizures as well as the cause. The brain is complex stuff. We need to learn more. We need to have better treatments so that children, like mine, will have a fighting chance to have the life they deserve. #### Making a Difference I have been happy to use my platform as Alexander Hamilton to raise awareness. For now, we will continue to support her and work to get her on her feet. As a parent, the feeling of helplessness is the worst there is. That is why we fight. That is why we are always searching for ways to improve her situation. I feel that living well with epilepsy is what we are forced to do. I want, for my daughter, and for every person who has epilepsy or a family member dealing with it, to NOT live with it. To cure it. To talk about it in the past tense. We will continue to fight. We will continue to work with [CURE](http://www.myshotatepilepsy.org/). I will go onstage every night and sing for her. I want everyone out there to know that we are fighting for you and with you. [RISE UP](http://www.thenumberproject.co/riseup/mike-opyd-website-1)!! #### A little Purple Day love Below is a fun video of Miguel recognizing Purple Day with his fellow Hamilton cast member Chris Lee. > [Showing our purple for my baby girl and everyone out there dealing with epilepsy. We are with you!!! #purpleday2017 #epilepsyawareness](https://www.instagram.com/p/BSHbu35BFqB/) > > > > A post shared by Miguel Cervantes (@mig.cervantes) on Mar 26, 2017 at 2:18pm PDT --- ***NEXT UP: Be sure to check out the next post tomorrow on [how to particpate in the Twitter Chat](http://livingwellwithepilepsy.com). For the full schedule of bloggers visit*** [***livingwellwithepilepsy.com***](http://livingwellwithepilepsy.com/epilepsy-blog-relay)***.*** ***TWITTER CHAT: And don’t miss your chance to connect with bloggers on the [\#LivingWellChat ](http://twubs.com/livingwellchat)on March 31 at 7PM ET.*** ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Blog Relay, Family, Mar 17 EBR Posts, Side Effects **Tags:** Epilepsy Blog Relay --- ### [Leila's Ideas: Having a Pity Party](https://livingwellwithepilepsy.com/epilepsy-stories/leilas-ideas/leilas-ideas-pity-party.html) **Published:** May 11, 2017 **Author:** Leila Shields **Excerpt:** Epilepsy, and life in general, presents all sorts of hurdles; I like to overcome them with perseverance and joy. But lately, I don’t feel like overcoming them...and when I do, it’s not with joy. I feel like having my very own pity party. **Content:** ![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/05/20170226_201044-169x300.jpg "20170226_201044 – Living Well With Epilepsy")For those of you who keep up with my regular writings, you’ve probably figured out that I’m a positive person. Epilepsy, and life in general, presents all sorts of hurdles; I like to overcome them with perseverance and joy. But lately, I don’t feel like overcoming them…and when I do, it’s not with joy. I feel like having my very own pity party. For our [March 2017](http://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-march-2017-participants) [Epilepsy Blog Relay,](http://livingwellwithepilepsy.com/epilepsy-blog-relay) I wrote an article for this website about being [thankful for epilepsy](http://livingwellwithepilepsy.com/2017/blog-relay/mar-17-ebr-posts/thankful-for-epilepsy.html). It has influenced my life in so many ways and I am honestly grateful for the positive things it has done in my life. But right now, I am the furthest thing from thankful about epilepsy. #### My Pity Party I hate having epilepsy. It has reared it’s ugly head and beaten me down with its role in my life. I hate having to take so many pills in one day. I hate the side effects that those medications cause, leading me to be constantly exhausted and taking even more pills to counteract my AEDs. I hate that my memory is seemingly non-existent and causes me to forget even the most basic things. This is a constant interruption to my life. I’m pained at the fact that I have now developed stress induced episodes, which limits my ability to do my job as passionately as I would like. It also holds me back from applying to other jobs out of fear that my brain couldn’t handle them. I hate having epilepsy. I hate that my loved ones worry about my well being and are on alert for any abnormal behavior on my part. It’s a vigilance that, once it has begun, it will likely never end. I hate having to quell fears that someone has when I first tell he/she that I have epilepsy. I hate the fluid stream of emotions that having a disorder comes with–anger, fear, confusion, worry, frustration, sadness, the list goes on and on. I hate that I don’t remember a “normal” life, one free of medication, free of requiring a long list of specialists to pilot my life, free of constant concern for my health by myself and others, free of restriction both physically and mentally. I hate that I have no option for a cure, only opportunities to make [epilepsy management](http://livingwellwithepilepsy.com/2015/leilas-ideas/12975.html) easier, but never really to make it go away. I hate it and I want it to go away. Yes, I know that there are many, many others in this world who are worse off than I am. I know that I should be thankful for the AEDs that exist, in my abilities despite my epilepsy, and that I have such wonderful supports around me. If you talk to me on most days, I do hold these positive beliefs. But days like today, I wish I could rewrite my story. I wish I could form my story to be one of ease through [getting an education](http://livingwellwithepilepsy.com/2016/leilas-ideas/leilas-ideas-back-school-epilepsy.html), to one where my personality develops without the “Kepprage” and is wholly me. I’d spend no money or time on prescriptions and specialists, but instead invest in opportunities and experiences. My parents would get more sleep at night and my friends wouldn’t have to keep watch for my safety when we are together. My story would be one of success, instead of success with an asterisk next to it, denoting that I have epilepsy which impacted this success. Did it impact it in a positive way or negative way? Well, you’ll have to use your imagination for that one. Sure, I may be successful, but how much more successful could I have been if I didn’t have a steep IQ drop due to my seizures. What else could I have accomplished if I didn’t have to devote so much time to sleep? What could I have learned over my lifetime if I had a fully working memory? How would my self-confidence be different if I hadn’t been bullied for years? Where would I be in life? No one can answer that. I know. I know I cannot go back in time and change events. I know that epilepsy has also had a positive impact on my life. And I know that no matter how I look at it, my epilepsy is not going away. So, this is when I rely on my supports that I mentioned earlier, to love me and my whole self through the days I struggle. I rely on you, my epilepsy community, to remind me that life is not all bad with epilepsy. And I rely on myself to ultimately pick myself up, put one foot in front of the other, and move forward with my life. At the end of the day, epilepsy has impacted life in good and bad days. The only way to get through the bad days is to focus on the good. This ends my pity party. I will pack up my tears and half-inflated balloons and get out my party hat and confetti. I will celebrate that I have a life, one that brings joy and love. I will remind myself of the good that exists here and get back to appreciating my life, epilepsy and all. ![author avatar](https://secure.gravatar.com/avatar/4cebf381fbce646cb0dbabef2348282b941c67524a3f03f08d6e328fa6c976cb?s=300&d=mm&r=g) Leila Shields Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania. [See Full Bio](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/leila.zorzie) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://lzorzie) **Categories:** Leila's Ideas, Life With Epilepsy, Side Effects **Tags:** Emotions and stuff --- ### [Epilepsy Blog Relay™: A Mom's Perspective](https://livingwellwithepilepsy.com/epilepsy-blog-relay/a-moms-perspective.html) **Published:** June 7, 2017 **Author:** Abby Gustus-Alford **Content:** [![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/06/FullSizeRender-002-300x259.jpg "Abby and Mom – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/fullsizerender-002)***This post is part of the [Epilepsy Blog Relay™](http://livingwellwithepilepsy.com/epilepsy-blog-relay) which will run from June 1 to June 30, 2017. Follow along!*** *For the blog relay this month, I wanted to provide another perspective. By now, you know mine. Epilepsy sucks. It’s a challenge… all. the. time. But, I always try to remember how hard it can be on my family too. Sometimes what they go through is just as difficult.* *So, I asked my mom for her perspective. Here it is.* #### Mom’s Story “Abby’s declared herself. She has a seizure disorder.” Those words, uttered by the doctor, will forever stay with me. I was devastated. Our precious daughter was diagnosed with epilepsy and we were about to begin a journey that our family had not bargained for. There were countless doctor visits, tons of medical tests, and all different medications used to treat Abby, but nothing seemed to help during those first tumultuous weeks and months after her diagnosis. I felt like our life had been turned upside down. We had a beautiful, successful teenage daughter who was angry and resentful that she had to deal with epilepsy. As I look back she fought taking her medication and visits to the doctor every step of the way. It was a daily challenge for our family to protect her and keep her safe. I wanted Abby to take her medicine on a regular basis—every twelve hours. I bought every type of pill box, so she would keep the tablets of medicine with her at all times. She would leave the house for a weekend activity and I would find the pill box stashed in her room or the bathroom. She would then suffer another seizure because she missed a dose of medicine. How would we ever help her if she did not cooperate and follow the doctor’s instructions? Getting Abby through high school was a very difficult time for us. She had break through seizures at night when she was sleeping. I clearly remember one night when we heard Abby fall out of bed. Her dad and I ran into her room, only to find her on the floor in a full-blown seizure. Her eyes rolled back in her head, she was rigid, her teeth were clamped together, and she was shaking uncontrollably. After the seizure was over, we got her back into bed so she could sleep and recover. When we got back in bed, I looked over at my husband and he had tears running down his face. He did not want to talk about it, so we went back to sleep feeling sadness and grief. That was moment I realized that the seizures were affecting both of us. The seizure disorder affected my husband and me, yes, but is affected her brother, Byron, as well. I recall the day that he had a disagreement with me. He said to me, “You are always helping Abby, but you ignore me.” It was at that moment I realized we were making accommodations for Abby and her epilepsy, but not attending to the needs of her brother. I apologized to him and made a concerted effort to care for his wants and needs as much as I cared for Abby’s. Another memorable incident occurred while we were at dinner with my extended family—my sisters and nephews. We were at a local restaurant having dinner. Abby was getting her hamburger just the way she wanted it and looked at the ketchup and said, “Please pass the red”. I looked at her terrified and wondered if the seizures were causing word-finding problems. Had we entered another stage in our journey with epilepsy? I knew we needed to find another doctor to see if he could help her. We did locate a wonderful doctor at Children’s Hospital in St. Louis, and we believed we had found someone who would help us. Even though Abby was resistant and not sure if she liked this particular doctor, her father and I did. This wonderful pediatric neurologist prescribed medicine that did not have as many side effects. She was getting ready to leave for college so we know that we needed a better combination of medicines so she would be able to function in her new environment. She chose to attend Purdue University to my delight since that was my alma mater. Luckily for her father and me, she ended up with a roommate, Kelley, who we saw as an angel from heaven. She seemed to be there whenever Abby’s seizures occurred and always provided her the love and care she needed. One day when Abby was out of college and in the workplace, I finally saw a more grown up version of our daughter. We were sitting in the living room and she said, “I don’t want to have these seizures anymore. I can’t remember so many events from my past. What do I need to do?” I felt at that moment we crossed an important barrier she had had up for so many years. I replied that it is important to take her medicine regularly, eat a healthy diet and get enough sleep. Those were a few modifications she could make to her lifestyle that would help to change the outcome of her seizure disorder. To my delight she took the advice and began working on her own health, and we saw a significant decrease in her seizures. There are some long-lasting effects of epilepsy we see today. Abby’s memory of special events or times from high school is gone. I might say, “Remember when we….” and Abby responds in the negative. She, to this day, has no recollection of the events we often discuss as a family. The seizures have erased them from her memory. It makes me sad that she cannot recall special times. Today, I’m proud to say, we remained close during all of the time we were trying to navigate this difficult seizure disorder. I am happy to tell you that Abby has done well, and we remain a closely-knit family, though it has always been a challenge to find our way through the many trials and tribulations of the epilepsy journey. --- **[![](http://livingwellwithepilepsy.com/wp-content/uploads/2016/10/LWC1-150x150.png "lwc1 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/portfolio/nov30-16-3/attachment/lwc1)NEXT UP:** Be sure to check out the next post tomorrow by Soo at . For the full schedule of bloggers visit [livingwellwithepilepsy.com](http://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). **TWITTER CHAT:** And don’t miss your chance to [connect with bloggers](https://docs.google.com/forms/d/e/1FAIpQLSf9bLAmE0owvlj46nRIE85fUq5Xakq7ofRSqL4ZFJz_3imB_w/viewform?c=0&w=1) on the #LivingWellChat on June 30 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fc6da7355dbaf3b5333da396f069a80e1cb0f14ba7b3b3c9d7276454b2c67b50?s=300&d=mm&r=g) Abby Gustus-Alford Abby Gustus Alford was diagnosed with epilepsy at the age of 12 after multiple grand mal seizures over six-mos. She has a BA from Purdue and her Master’s from Northwestern. [See Full Bio](https://livingwellwithepilepsy.com/author/abby) [ ](https://livingwellwithepilepsy.com/author/abby) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://abbyg_alford) **Categories:** Epilepsy Blog Relay, Family, Jun 17 EBR Posts, Side Effects **Tags:** Epilepsy Blog Relay, Mom, motherhood --- ### [Epilepsy Blog Relay™: Talking about epilepsy changed my life](https://livingwellwithepilepsy.com/epilepsy-blog-relay/talking-about-epilepsy-has-changed-my-life.html) **Published:** November 9, 2017 **Author:** Emily Lawrence (Nee Donoghue) **Excerpt:** I turned to writing and learned to speak openly about epilepsy. Now, I have become someone who is much more confident. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/11/happy-everything-240x300.jpg "happy everything – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=16893)***This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from Nov. 1 to Nov. 30, 2017. Follow along!*** #### Oh my epilepsy Epilepsy has changed my life. I’ve grown up with it, it’s found a big place in my life, and I have made adjustments. It has changed my life in so many ways, but I think it has made me who I am today. Over the years as my epilepsy has developed into more complex seizures, I have developed as an individual. I am more confident, funnily enough. #### The early days I was only young when I was diagnosed — the years of seizures came with rounds of hospitalizations, monitoring, drug changes and dosage adjustments. I’d be lying if I said I didn’t have days when I wanted to just close my eyes and disappear. It sounds awful, but that is how I felt when the medications were hitting me left, right and center with side effects. I have never wished for a miracle cure, but for happiness and closure for my family. Truth is, I’m grateful for this life, and I remind myself to take pleasure in the simple fact that I am alive. #### Time to talk about it I feel like it’s only these past couple of years that people really talk about medical conditions. Illnesses and such are so taboo, and I myself experienced the feeling of not wanting to talk. I used to hide things because I was worried that people would be scared of me or not want to work with or even be around me. When I first started on a medication that made me so low, but I didn’t want to tell anyone. I was able to blog about my feelings to online friends who didn’t even know me at the time. Then one of my real life friends found my post and that was it. My group of friends knew my darkest thoughts about how Epilepsy made me feel, and then my family soon after. I was surprised when this turned out to be a good thing. That was when I realized I needed to speak up, I couldn’t keep things locked up anymore because I was just falling apart. I turned to writing etc. and learned to speak openly and honestly about the condition, both to those around me and on social media. My seizures can just happen but most the time I do get an aura, but it would be so much better if everyone could recognize seizures and know how to help. #### Change can be good I have become someone who is much more confident. Speaking out has really helped my confidence and my safety, as well as my family’s mental health because they all suffered from anxiety not knowing how I would get on at college, whether I would secure myself a job and such. When my column started to get more recognized, I met more and more people. It was sad for me to hear that so many with epilepsy feel embarrassed talking about it, and worry that they will be discriminated against if they do, so I wanted to kick start more awareness by sharing my story so that others could feel less anxious and alone. I wanted to change the relationship of isolation and Epilepsy. It is certainly nothing to be embarrassed about and the findings I found along the way highlighted why speaking out is so important to those living with epilepsy. The more we talk about epilepsy, the more we can challenge common misconceptions about it and offer the general public a clearer idea of what epilepsy is. It was hard but once I shared my story the once, everything fell into place. Despite it being a tough journey, it has been an incredible one and I truly believe Epilepsy has made me the person I am today. Epilepsy is in my life but it doesn’t own my life. --- **NEXT UP:** Be sure to check out the next post tomorrow by Jennifer Lounsbury, at . For the full schedule of bloggers visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). **TWITTER CHAT:** And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/5523d28ae8bbaedc9d082d51d29393ca490379cd31464b99ab3c7d50a49362ac?s=300&d=mm&r=g) Emily Lawrence (Nee Donoghue) 25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England. Emily's Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10. Based in UK. [See Full Bio](https://livingwellwithepilepsy.com/author/emilyd) [ ](https://livingwellwithepilepsy.com/author/emilyd) **Categories:** Epilepsy Blog Relay, Nov 17 EBR Posts, Side Effects --- ### [Top 10 Epilepsy Stories in 2017](https://livingwellwithepilepsy.com/epilepsy-stories/jessicas-posts/top-10-epilepsy-stories-in-2017.html) **Published:** December 17, 2017 **Author:** Jessica K. Smith **Excerpt:** As 2017 comes to a close, I thought I might take a minute to share Living Well With Epilepsy's top 10 epilepsy stories this year. **Content:** It has been an amazing year at Living Well With Epilepsy. As 2017 comes to a close, I thought I might take a minute to share our top 10 epilepsy stories this year. I encourage you to kick off 2018 with an infusion of positive energy as you read each of the stories below. #### 1. Epilepsy Blog Relay™: Greg Grunberg on why it is important to Talk About It! #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/03/Greg-Headshot-21-1024x683.jpg "Greg Headshot 2(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/greg-grunberg-on-handling-setbacks.html/attachment/greg-headshot-21) #### Greg’s Story Despite the fact that millions of people across the globe are living with epilepsy, there is still stigma attached to the condition. And as a result, people living with epilepsy can feel isolated and alone. This needs to change. Through my experiences as a parent of an adult son living with epilepsy, I feel strongly that curbing the stigma starts with patients and their loved ones talking openly and honestly about epilepsy. In my opinion, the more that people talk about epilepsy, the more others will understand the condition, and the faster the stigma will disappear. [Read the Story ](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/mar-17-ebr-posts/greg-grunberg-on-why-it-is-important-to-talk-about-it.html) #### 2. Gemma’s Story: It’s time for a change when you’re not seizure free anymore #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/08/me-1.jpg "me – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/personal-epilepsy-stories/gemmas-story-time-for-a-change.html/attachment/me-5)Gemma’s Story Today is the day I can no longer say ‘…but it’s okay, I’m seizure free’ when explaining my condition. I have been diagnosed with epilepsy for over 7 years. I am the first one to make light of the situation, ‘No I can’t drive 🙁 but I get free public transport!!’ When I was first diagnosed I was in my early 20’s and didn’t really take it too seriously. I continued partying most nights and rolling into work for the breakfast shift.I continued having seizures, but as lack of sleep, alcohol and not taking my medication regularly seemed to be a trigger I just shrugged my shoulders and told myself it’s my own fault. It was only 2 years ago when I took a long look in the mirror and realized a change was needed. [Read the Story ](https://livingwellwithepilepsy.com/2017/livingwell/gemmas-story-time-for-a-change.html) #### 3. Epilepsy Blog Relay™: Melanie Griffith on living with epilepsy #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/01/P22-988x1024.jpg "– Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/livingwell/looking-forward-to-a-fresh-start.html/attachment/p22)Abby’s Story I am not going to lie. I was absolutely shocked when my Twitter feed blew up with Tweets about [Actress Melanie Griffith](http://www.imdb.com/name/nm0000429/), while on a panel for Women’s Brain Health Initiative, revealed she too was battling epilepsy. I wanted to run up to her and give her a hug. Then, I got online to read about it. Turns out, she recalled two seizures in her public appearance that happened in 2011. 2011! Wow! [Read the Story ](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/nov-17-ebr-posts/melanie-griffith-living-with-epilepsy.html) #### 4. Epilepsy Blog Relay™: Jacob’s Not So Everyday Life #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/05/Jacob1.jpg "Jacob(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/portfolio/jun-5-jacobmundt/attachment/jacob1)Jacob’s Story Having epilepsy has taught me that anything can happen in life unexpectedly. I’ve learned that the way to deal with that is to slow down, take a deep breath, come up with a plan and keep charging forward. I’ve never been the kind of guy who accepts the status quo—or who backs down when someone tells me “no.” Pushing myself harder and harder to be the best I can be every day is just what makes me happy. These days, that means working with my doctors, managing stress, and meeting personal goals. Each day I make sure to NOT let epilepsy stop me from being the person I want to be. [Read the Story ](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/jacobs-not-so-everyday-life.html) #### 5. Traveling with Epilepsy: Does air travel altitude lower seizure threshold? [![](https://livingwellwithepilepsy.com/wp-content/uploads/2013/12/IMG_3072-1024x764.jpg "On top of the world – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2014/personal-epilepsy-stories/anonymous-story-good-life-despite-epilepsy.html/attachment/img_3072) #### Maureen’s Story Over 20 years ago, I told my neurologist that before menstruation, my number of seizures increased. I had never been told (or read) my monthly cycle could be a trigger, but my gut feeling said it was. My doctor assured me that menstruation was *not* a trigger and the increase in my seizures was mostly likely stress related. She stuck to the facts, as doctors do. 20 years later, The Epilepsy Foundation released that 50% of female patients of childbearing age, are likely to have an increase in seizures related to the hormonal changes that occur with menstruation; a physiological change. My story is not to discredit my doctor’s knowledge, but to show doctors are limited to what is scientifically proven at that given time. Our knowledge of epilepsy is constantly evolving. [Read the Story ](https://livingwellwithepilepsy.com/2017/livingwell/travel/traveling-epilepsy-air-travel-altitude-lower-seizure-threshold.html) #### 6. Facebook Says Epilepsy May Offend Users #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/09/ads-not-approved.png "ads not approved – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/livingwell/facebook-says-epilepsy-may-offend-users.html/attachment/ads-not-approved) #### Jessica’s Story If you have ever posted anything on Facebook and tried to reach a wide audience, you know you just have to bite the bullet and pay for advertising. But apparently Epilepsy is now potentially offensive to the Facebook community. This makes raising epilepsy awareness via the platform a bit of a challenge. Facebook has some rules and regulations advertisers need to follow. These are fair enough in most cases. For example, there can only be a certain amount of text in an image. Generally, I have found these rules inconvenient but not a real problem. But Facebook has finally take the rules and regs too far. *Note: I encourage you to read the comments under this story as well.* [Read the Story ](https://livingwellwithepilepsy.com/2017/livingwell/facebook-says-epilepsy-may-offend-users.html) #### 7. Epilepsy Blog Relay™: Caring for a sick spouse [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/04/fam-pic.jpg "fam pic – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/epilepsy-blog-relay-caring-for-a-sick-spouse.html/attachment/fam-pic) #### Shannon’s Story We have all felt it, that tiredness and loneliness that comes from taking care of a sick spouse. But when you have a spouse with epilepsy, life takes on a whole new meaning. My husband, Jake, of nineteen years, never took a day off & was never sick. Then in early 2015, Martin Luther King Day to be exact, he had the holiday off and was staying home with our baby at the time. My older 2 girls and I were getting ready to leave the house, when Jake ran into the bathroom after feeling like he was going to be sick. The next thing I knew, my oldest daughter, Andee, who was 16 at the time, came running and screaming that something was going on with Dad. I ran into the bathroom and found my husband in a full on grand mal seizure. I yelled at my girls to go get the neighbor and call 911. I stayed with Jake and ended up having to give him mouth to mouth as he never started breathing on his own after the seizure. [Read the Story ](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/epilepsy-blog-relay-caring-for-a-sick-spouse.html) #### 8. Karl’s Story: The Gift of Epilepsy [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/04/17634347_10158427295390052_1716418368015418758_n.jpg "17634347_10158427295390052_1716418368015418758_n – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/personal-epilepsy-stories/the-gift-of-epilepsy.html/attachment/17634347_10158427295390052_1716418368015418758_n) #### Karl’s Story In October 1997, when I woke up on a bed in the middle of a busy hospital I would not have said Epilepsy was a gift. In fact, I think my first words are not appropriate for this story, however that was when I was a 21 year old soldier on a peacekeeping mission in Bosnia. #### A Soldier Re-examines His Life Waking up that night, after having my first Tonic-Clonic seizure, I immediately began to think about my career as a soldier and of all the things I would not be able to do anymore. This experience was not my first exposure to epilepsy because I watched how it affected my younger sister’s life since she was 6 years old. Life was not easy for her, especially as she got older and so I imagined that in addition to not being able to fulfill my duties as a soldier, I was on my way to a drastically altered lifestyle. At that point of my life, I was a young adult, an infantry soldier, a hockey player, I loved to mountain bike and I never once gave thought to not being able to drive. As many of you reading this can relate, many of the important pieces of my life, those which have defined me, were swiftly taken away. [Read the Story ](https://livingwellwithepilepsy.com/2017/personal-epilepsy-stories/the-gift-of-epilepsy.html) #### 9. Emily challenges the status quo of her mood [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/01/15337523_1804808489772690_322827641510023194_n-e1483299819427.jpeg "15337523_1804808489772690_322827641510023194_n – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/aboutus-lwwe/emilys-perspective/emilys-perspective-looking-back-on-2016.html/attachment/15337523_1804808489772690_322827641510023194_n) #### Emily’s Story I know it’s been a while, things have been hard recently. In August I ended up in hospital again after having seizures without regaining consciousness. I also had intense vertigo which I have never experienced before. I felt like I was constantly on a roundabout that I couldn’t get off. I was signed off work for two weeks but got back into the swing of things again a few weeks ago. I feel like it is a huge balancing act at the moment, we’re trying hard to get the right medications to suit me so I can have a seizure free streak again. #### The urge to run Do you ever have the urge to run away? Not run away from home, not run away from the people you love, but to run away from the problems in your mind? Not the urge to pack your bags and go. I get this urge less frequently than I did in the past when I suffered from severe anxiety, but it still brews within my mind sometimes. I have a desire for adventure and trying new things, but at the minute I am stuck. A lot of things are hard when you’re feeling low. Getting up in the morning can be hard. Finding the energy to do everyday tasks can be hard. But changing yourself and your thoughts is especially hard. [Read the Story ](https://livingwellwithepilepsy.com/2017/livingwell/emily-challenges-the-status-quo-of-her-mood.html) #### 10. Epilepsy Blog Relay: When Giving Up Is Not An Option [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/03/12994440_881982351927265_371268824820668212_n.jpg "Alyssa profile – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/epilepsy-blog-relay-alyssas-story-shadow-light.html/attachment/12994440_881982351927265_371268824820668212_n)Photo credit Frank Yepiz#### Alyssa’s Story Haruki Murakami once said, “When you come out of the storm you won’t be the same person that walked in after.” When I was diagnosed with Epilepsy at the age of six, my life transformed into a monsoon. I started having trouble socially, academically, and physically. It seemed as if my world was in a downward spiral until I was introduced to softball. That is where I learned that giving up was never an option. Growing up I was an outgoing and troublemaking child. When I was prescribed my medication, the side effects made me a different person. At times my medication would cause me to be confused, which also caused me to urinate on myself. I remember being so upset; I was a twelve-year-old girl and knew that not everyone knew my story. I was always embarrassed and self-conscious around people because I would feel like the odd one out. If my shyness wasn’t bad enough, my grades were also not as good as I would have liked them to be. I was a child that enjoyed learning something new every day. I would always participate in class, raising my hand to share my answers until the moment I started struggling to understand what was being taught. I remember going home and my parents would ask me what we learned in school that day, but my memory was always hazy and I just couldn’t remember. It was stressful when it came time to take a test. No matter how hard I worked, I still received a low grade. There were only two subjects I did well in and they were art and music. [Read the Story ](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/epilepsy-blog-relay-alyssas-story-shadow-light.html) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Grand Mal / Tonic Clonic, Jessica's Posts, Side Effects **Tags:** 2017, top 10 --- ### [Epilepsy Blog Relay: Tips to feel less isolated and alone after an epilepsy diagnosis](https://livingwellwithepilepsy.com/epilepsy-stories/tips-to-feel-less-isolated-and-alone-after-an-epilepsy-diagnosis.html) **Published:** March 17, 2019 **Author:** Guest Contributor **Excerpt:** Michael shares how he feels isolated and alone since his diagnosis of epilepsy. He doesn't know anyone else living with epilepsy. **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/12/20181207_215147_Film3-7-e1552696972339-300x271.jpg "20181207_215147_Film3-7 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/20181207_215147_film3-7)This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) which will run from March 1 through March 31. Follow along!*** #### Michael’s Story My name is Michael I live in Long Island, New York and I have had epilepsy ever since I was 13 years old. I had movements prior to me having a seizure in school, but no one believed me. I also have hydrocephalus. That is a condition in which there is too much water built up in the brain. My doctor believes that is the reason why I have epilepsy. Nevertheless, I have had around 4 ‘s words’ (seizures) throughout the whole time I have had it. I am 20 years old now and take medications; that has kept it under control. Now, notice how I wrote ‘s word,’ I find it hard to even say. The word makes me feel bad every time I hear it. I would rather people just say I had a brain storm. I still live with epilepsy and I do get depressed at times. Sometimes I get tired easily and I have a bit of a learning problem due to my epilepsy. All through high school, I did feel like I was labeled as the kid with epilepsy. It’s hard to find people who support me. No one that I know of really has epilepsy. That is why I posted this blog, in order to get support and maybe help others. I hope others can read this and we can continue to help and raise awareness of epilepsy. #### If you are feeling alone, here are a few more articles that might help: - [Life with epilepsy in high school](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/nov-18-ebr-posts/epilepsy-in-high-school.html) - [Coping with depression, could it be a side effect?](https://livingwellwithepilepsy.com/2019/epilepsy-blog-relay/mar-19-ebr-posts/coping-with-depression.html) - [4 great reasons to exercise](https://livingwellwithepilepsy.com/2018/livingwell/4-reasons-to-exercise-when-you-have-a-chronic-illness.html) - [Tips for dealing with an epilepsy diagnosis](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/nov-18-ebr-posts/5-tips-for-dealing-with-an-epilepsy-diagnosis.html) #### If you were just diagnosed with epilepsy: - We’ve got articles on [getting used to your new normal](https://livingwellwithepilepsy.com/2015/aboutus-lwwe/emilys-perspective/new-to-epileptic-seizures.html) - Are you worried about how epilepsy is going to [affect your family](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/mar-18-ebr-posts/experience-with-epilepsy-creates-a-whole-new-family-of-supporters.html), [your loved ones](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/epilepsy-blog-relay-epilepsy-doesnt-just-affect-me.html) or just generally complicate [your dating scene](https://livingwellwithepilepsy.com/2018/livingwell/relationships/she-said-emily-and-dan-on-dating.html)? We have lots of stories that might help. - If [you are stressed](https://livingwellwithepilepsy.com/2018/aboutepilepsy/seizure-triggers/seizure-triggers-guide-resolutions.html) about dealing with [epilepsy at work](https://livingwellwithepilepsy.com/2015/leilas-ideas/leilas-ideas-stigma-in-the-workplace.html), don’t worry we’ve got you covered - Feeling like you are alone? Guess what, we have some pretty [honest posts to show you are not the only one dealing with seizures and side effects](https://livingwellwithepilepsy.com/2014/epilepsy-news/emilys-perspective-finding-good-gets-really-rough.html). - Do you have an EEG coming up and you are not sure what to expect? This one is [great for kids or anyone who has never had an EEG](https://livingwellwithepilepsy.com/2015/aboutus-lwwe/emilys-perspective/emilys-perspective-help-child-eeg.html)! --- ***NEXT UP:*** Be sure to check out the next post by Michael at [livingwellwithepilepsy.com ](http://livingwellwithepilepsy.com)for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay posts](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) you may have missed. [Share your story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Guest Posts, Mar 19 EBR Posts, Side Effects, Stigma --- ### [Emily's Perspective: The effects of epilepsy on the whole body](https://livingwellwithepilepsy.com/epilepsy-stories/emilys-perspective/effects-of-epilepsy.html) **Published:** January 29, 2015 **Author:** Emily Lawrence (Nee Donoghue) **Excerpt:** A diagnosis of epilepsy means that you have recurring seizures. It is important to remember that the effects of epilepsy can be felt throughout the body. **Content:** [![hospital](http://livingwellwithepilepsy.com/wp-content/uploads/2015/01/hospital-300x225.jpg "hospital – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/01/hospital.jpg)A diagnosis of epilepsy means that you have recurring seizures. It is a condition of the central nervous system; effects of epilepsy can be felt throughout the body. Most people don’t know a seizure is coming on, and due to this unpredictability, there can also be a great emotional toll, which I have experienced over the years. ### Circulatory and Respiratory Systems Epileptic seizures can interfere with your heart rhythm and breathing. Because of this, I experience a constantly high heartbeat of 130bpm resting heartbeat, after a seizure it reaches it highest at 240bpm. Over the long term, epilepsy increases risk of heart disease and stroke. ### Muscular and Digestive Systems During a seizure, signals from the brain can tell your muscles to contract and relax (as in convulsions, for example). A seizure may cause muscles to jerk uncontrollably. In some cases, you can lose muscle tone so quickly that you fall down. This is often referred to as a drop seizure. When muscles surrounding your vocal cords seize up, it pushes out air. As an example, when I have a seizure it sounds like a cry or a scream because of the air being pushed out. ### Effects of epilepsy on emotions and behavior Concerns about the effect of having recurring seizures on an individual’s emotional state and behavior are often raised. In most cases such changes are caused by the strains of dealing with our society’s attitude toward disability in general and epilepsy in particular. I want to show people that epilepsy is more than what it seems, and that it doesn’t change us as a person. That aside, though, medication and the seizures themselves can affect a person’s emotional state. Keppra medication personally effected me and my mind, I experienced a feeling of constant dread, distress & hopelessness. > Find a place inside where there’s joy, and the joy will burn out the pain – Joseph Campbell ### Fear of having a seizure I believe the fear of having a seizure can bring about emotional problems such as extreme anxiety. It is often the possibility of having a seizure, rather than the seizure itself, which may be distressing to the person with epilepsy. Paralyzed by a fear of having a seizure in public and the very real possibility of injury, a person living with epilepsy may seclude her- or himself. As a result that person can become very isolated. I have experienced this myself, and I know we’re not alone in this. A person living with seizures may be anxious about other people’s reactions to a seizure. Many people who witness a seizure may react by being afraid and embarrassed by the situation. Since the individual who has seizures has no control over other people’s reactions during a seizure, he or she may prefer to stay alone and in isolation, so nobody has to experience it other than them. ### Experiencing stigma Being stigmatized for having epilepsy is also an important aspect in the emotional toll of seizures. Popular misconceptions about epilepsy are still widespread. Again, other people’s negative responses may considerably add to the stress of the person with epilepsy and may lead them to choose isolation over social interaction. Always remember this: You may have epilepsy, but epilepsy does not have you! ### Seizure first aid If you ever see somebody having a seizure, would you know what to do? If no, then keep reading below: **For a tonic-clonic seizure** - move them away from anything that could cause injury – such as a busy road or hot cooker - cushion their head if they’re on the ground - loosen any tight clothing around their neck – such as a collar or tie, to aid breathing - when their convulsions stop, turn them so that they’re lying on their side - stay with them and talk to them calmly until they have recovered - note the time the seizure starts and finishes ***IMPORTANT:** Don’t put anything in the person’s mouth, including your fingers. They may bite their tongue, but this will heal. Putting an object in their mouth could cause more damage.- Source NHS* **Call for help (999/911/111) if:** - it’s the first time someone has had a seizure - the seizure lasts for more than five minutes - the person doesn’t regain full consciousness - the person has a series of seizures without regaining consciousness [Read more Emily’s Perspective articles ](http://livingwellwithepilepsy.com/category/emilys-perspective) ![author avatar](https://secure.gravatar.com/avatar/5523d28ae8bbaedc9d082d51d29393ca490379cd31464b99ab3c7d50a49362ac?s=300&d=mm&r=g) Emily Lawrence (Nee Donoghue) 25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England. Emily's Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10. Based in UK. [See Full Bio](https://livingwellwithepilepsy.com/author/emilyd) [ ](https://livingwellwithepilepsy.com/author/emilyd) **Categories:** Emily's Perspective, Side Effects --- ### [Epilepsy Blog Relay™: Leila's Ideas on Creatively Living Well](https://livingwellwithepilepsy.com/epilepsy-stories/leilas-ideas/creatively-living-well.html) **Published:** March 17, 2016 **Author:** Leila Shields **Excerpt:** Side effects from seizures and medication sometimes leave me feeling lost. I must get creative to be successful in my everyday life. **Content:** [![Controlling my seizures](http://livingwellwithepilepsy.com/wp-content/uploads/2014/02/IMG_361111.jpg "IMG_36111 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2016/emilys-perspective/home-treatment.html/attachment/img_36111)***This post is part of the [Epilepsy Blog Relay™](http://www.livingwellwithepilepsy.com) which will run from March 1 through March 31, 2016. Follow along!*** Growing up, I had many negative side effects as a result of my medications and seizures. In fact, I still deal with the impact of those 2 factors in my life. When I was young and today, I have to find ways to adapt to these difficulties. I must get creative to be successful in my everyday life. I’m going to share some of those adaptations in the hopes that you, too, will find them useful. #### **How I Creatively Helped Myself** Ever since I began medication, my memory has suffered. In middle school, I had so much trouble simply remembering daily tasks. My parents and teachers begged me to use an agenda, I was defiant. I never remembered to bring my agenda with me places and even if I did, I never thought to write things down in it. It was a tool that simply didn’t work for me. My solution was to write on my arm. Whenever I thought of a task or was given an assignment, I made sure it was somewhere I couldn’t ignore. It wasn’t the best solution, but it was what worked for me at the time. After a few years of having ink cover my arms, I matured and appreciated the function of an agenda. Especially handy in college, I didn’t go anywhere without my planner. Everything I needed to know or remember was written in there. I had a color coding system for all of my tasks and looked it over religiously. I continue to use a planner each day; I would be lost without it! I pair it with a large wall calendar that is color coded in the same way. Using both of these tools ensures that I always have somewhere convenient to look to find out what is going on in my world. The more often I look at my plans, the better chance I have to cement them in my mind. In the off chance I don’t remember to write something in my planner, or if I have a task/idea that isn’t planner-appropriate, I use post it notes. I have a group of sticky notes in each room and use them when a quick thought pops into my mind. I stick them wherever is most appropriate: on my desk, my laptop, on a folder, or in my car. #### **How Others Creatively Help Me** My parents have always been my biggest supporters. I recall my mom helping me exercise my memory when we went grocery shopping. She would verbally give me a list of 3 items to go and get in another part of the store. I had to work hard to remember each item and bring them back. It didn’t always work; I often came back with only 2 items or 3 items with one being incorrect. Still, it helped me figure out ways to remember lists: repeating them over and over again, inventing jingles and singing them to myself, and creating acronyms from the first letter of each word. Before I discovered the joy of post it notes for things that weren’t appropriate for my agenda, I needed a way to remember daily tasks. To help, my parents left notes around the house. For example, to remember to take medication, they taped a notecard to the bathroom mirror. That way, before I went to bed, I was always reminded to do that task! Plus, my parents weren’t constantly reminding me of something, which would have been frustrating for all parties. I always warn my friends and coworkers that I have a bad memory. At first it was hard to admit; no one likes to tell others their faults up front. But because I’m so honest, those around me are more forgiving when I forget something they told me or asked me to do. It also motivates me to prove myself wrong! Yes, I can be forgiven if I don’t recall something, but I don’t want to be in that situation and I work harder to store my memories. Even when I fail, having supportive people around me reminds me that I am so loved, regardless of my faults. As long as I have seizures and am on medication for them, I will have side effects that change my life. Some of those effects are bad, but they don’t have to drastically change my life. As long as I find creative ways to adapt and have the support of my loved ones, I can continue to be successful. #### **What creative ways have you adapted to your seizures and medications? Share what has been most helpful for you in the comments!** --- ***NEXT UP: Be sure to check out the* *Faye Waddam’s* *post March 18, which can be found at*** *********. For the full schedule of bloggers visit***[ ***the March Participants gallery.***](http://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-mar-2016-participants) ***You can still participate in the Epilepsy Blog Relay*** [***Thunderclap***](https://www.thunderclap.it/projects/38104-epilepsy-blog-relay-mar-16) ***to raise epilepsy awareness.*** ***And don’t miss your chance to connect with bloggers during our Twitter Chat using the hashtag #LivingWellChat on March 31 at 7PM ET.*** ![author avatar](https://secure.gravatar.com/avatar/4cebf381fbce646cb0dbabef2348282b941c67524a3f03f08d6e328fa6c976cb?s=300&d=mm&r=g) Leila Shields Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania. [See Full Bio](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/leila.zorzie) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://lzorzie) **Categories:** Epilepsy Blog Relay, Leila's Ideas, Life With Epilepsy, Mar 16 EBR Posts, Side Effects **Tags:** Creativity and Epilepsy, Epilepsy Blog Relay, epilepsy stigma, Leila's Ideas, Living Well With Epilepsy, living with epilepsy --- ### [Ever had to change medications to reduce side effects?](https://livingwellwithepilepsy.com/life-with-epilepsy/ask-an-epileptic-change-medications.html) **Published:** August 24, 2013 **Author:** Jessica K. Smith **Content:** ## **Ask an Epileptic:** “It’s time for me to change medications to reduce the side effects. Have any advice?” **DEAR EPILEPTIC: I have a question regarding the transition to a new medication. I have been taking Lamictal for over 10 years and I’m tired of the side effects. Memory loss, inability to focus clearly, etc. I think it’s time to explore other medications. Has anyone moved from Lamictal to another medication? Is anyone currently taking Lamictal with another medication? Any info would be appreciated. Thanks!** – David [![Lamictal](http://livingwellwithepilepsy.com/wp-content/uploads/2013/08/Lamictal-500x300.jpg "Lamictal – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2013/08/Lamictal.jpg)Photo by [grapefruitmoon](http://www.flickr.com/photos/grapefruitmoon/)DEAR DAVID: Thanks so much for your question. It’s a situation that many people with epilepsy struggle with. I am certain this post will encourage readers who have been on Lamictal and gone through the transition will have advice for you. Ultimately, of course, you will need to follow your doctor’s guidelines. ## Before you change medications I would encourage you to give your neuro as much info as you possibly can leading up to the change. For example, since memory loss is an issue, you may want to consider keeping a journal of [side effects](http://livingwellwithepilepsy.com/2013/08/generic-meds.html "Do generic meds differ from one manufacturer to another?"). Then be sure to bring the journal with you to the doctor’s office. I am on Topamax, which has similar side effects. I have been on [Topamax](http://www.drugs.com/topamax.html) for about as long as you have been on [Lamictal](http://www.drugs.com/lamictal.html). Honestly, I have to give you props for having the guts to make the change. I don’t know maybe I’m just lazy. I know a change FOR ME would involve a period of adjustment from the old meds to the new meds. Thankfully, my side effects are not enough to warrant a change. ## What makes the side effects worse I do know that when my stress level increases my memory worsens. I also know that when I don’t get enough sleep I’m not a happy camper. So, that brings me back to the journal. I would really encourage you write down the side effects that you just can’t live with and note how often you experience them. I also wanted to mention that your question prompted me to establish a set of [epilepsy forums](http://livingwellwithepilepsy.com/forums "Epilepsy Support Forums"). Please use them to ask questions of the community. It may help to get more immediate answers. Oh and make use of our facebook page! Thanks again for your question. ## Call for Questions You can submit questions for the next [Ask an Epileptic](http://livingwellwithepilepsy.com/2013/07/ask-an-epileptic-intro.html "Ask an Epileptic: A new column") until **August 29 at Noon ET** on [facebook](https://www.facebook.com/livingwellwithepilepsy) and [twitter, ](https://twitter.com/jessicaksmith)comment below, or you can use the form here. - If you have a question you want to ask now, just comment below. - If you have epilepsy and want to submit a question you are asked all the time – go ahead. - If there is one myth that you come across all the time submit it. (as a question) - If you have always wondered… submit it. You get how this works. I will gather up questions from the form below, comments, [twitter](http://twitter.com/jessicaksmith) and [facebook](http://facebook.com/livingwellwithepilepsy). The deadline to submit questions in this round is **August 29 at Noon ET**. \[contact-form to=’info@livingwellwithepilepsy.com’ subject=’Ask an Epileptic’\]\[contact-field label=’Name’ type=’name’ required=’1’/\]\[contact-field label=’Email’ type=’email’ required=’1’/\]\[contact-field label=’Your question’ type=’textarea’/\]\[/contact-form\] ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Life With Epilepsy, Side Effects **Tags:** #epilepsy #seizures, ask an epileptic, epilepsy forums, lamictal, topamax --- ### [Epilepsy Blog Relay: Coping with depression, could it be a side effect?](https://livingwellwithepilepsy.com/epilepsy-stories/coping-with-depression.html) **Published:** March 1, 2019 **Author:** Guest Contributor **Excerpt:** I hadn’t had a seizure in months so I should’ve been happy. But, I was miserable. I didn't realize my depression was a side-effect of my medication. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/01/img_558665-e1550800307956-300x300.jpg "img_558665 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=19805)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) ***which will run from March 1 through March 31. Follow along!*** #### Ana-Sophia’s Story Hi, my name is Ana-Sophia Beardsley and I fear that I’m overreacting. I’m a 17 year old senior at a small high school in the Appalachian foothills of southeast Ohio. On a field trip in the 8th grade, I collapsed into my first seizure in front of all the Jr. High students in my county. The oldest doctor I’ve laid eyes on ensured my panicked parents that it was a one-time thing. Two years later, he said the same thing. #### Bound for Barnard The summer of my sophomore year, I won a scholarship to study for one month at Barnard College–NYC, NY! Stoked, I showed up giddy. The first day, I had a seizure in the communal showers. I didn’t know it then, but that seemingly unfortunate event was a stroke of luck. The college was going to make me go home, but my mom wasn’t about to let that happen. She negotiated that if I saw a doctor and maybe started on medications, then I’d be able to stay. Barnard obliged. I went to a young, sarcastic doctor and she was incredibly well-versed in the world of epilepsy. She helped me understand what it means to be epileptic. The best doctor I’d seen, my confidence bolstered and I felt optimistic. She prescribed a fast-acting drug, and I continued my studies in the Big Apple. #### When depression takes over In my head, medications equaled solutions. I didn’t know that the drugs that claimed the ability to prevent an unexplainable condition, would destroy my mind. Depression was one of the side-effects. Each doctor’s visit they asked if I was experiencing side-effects; I always said no. I thought it was my fault. I didn’t leave my room for anything but food and volleyball practice. To me, the soul-crushing feelings ruling me were far from the idea of epilepsy. Honestly, I hadn’t had a seizure in months and I should’ve been happy. I was miserable. The spring of my [junior year in high school](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/nov-18-ebr-posts/epilepsy-in-high-school.html), I broke. I’d been on the same medication for about 10 months and I couldn’t do it anymore. My mom encouraged me to see a counselor and my new medical team switched me to a different anti-epileptic drug. Still, I figured my life would decline into a [dark chasm of despair](https://livingwellwithepilepsy.com/2018/aboutepilepsy/stigma/suicide-and-the-stigma-of-epilepsy.html). The summer between my junior and senior year, my life changed. After counseling, I was confident and wanted to go out. On a limb, I applied to a program to study in California and for three weeks discovered God’s bountiful creation of not only nature but people. I didn’t think before acting. I walked up to strangers and left with friends. Going into senior year, I felt reborn. Good spirits can’t cure epilepsy, so I had a seizure on the third day of school. And then in September and November and December. I’m frustrated but happier than I ever was seizure-free. Today, I want to throw up at the prospect of attending college with a disease and want to hide under my pink blanket most of the time. I’m bursting with contentedness, though. I want to live. It’s no longer a sentence, it’s a blessing. #### Resources: [https://twloha.com/ ](https://twloha.com/) [https://suicidepreventionlifeline.org/ ](https://suicidepreventionlifeline.org/) #### From one teen who’s been there Here’s the catch: my happiness isn’t necessarily codependent with my epilepsy struggles. It’s no coincidence that I was depressed only while on that first medication and now I’m transformed into the girl before the diagnosis. I’ve learned that you need to speak up–for me, it was almost the difference between life and death. You and I both know that we’re supposed to say that we’re fine. However, I’m so far from fine. I grapple with an incurable disease every day and I’d be lying if I said it isn’t taxing–and I have it good compared to most. As a teen, it’s terrifying to express sometimes very adult feelings, but I encourage teenagers, and adults, to take themselves seriously. I thought that my disease was a burden on others and I was oh-so wrong. I ask you to take a step back. How do you feel? I’m not trying to be Dr.Phil, but really, are you miserable? There’s a difference between circumstantial unrest and constant, gnawing pain. If you are depressed, don’t dismiss the possibility that your life-saving medications could be a contributor or cause. Please, you’re not crazy or lazy. The drugs we put into our bodies are chemicals, medically sanctioned concoctions created in a lab–they’re meant to be toxic. Sometimes instead of attacking your epilepsy, it attacks your mind. I invite you to be pushy. Ask if there’s an alternative route, be it a switch in medication or lifestyle, it’s worth pursuing. It’s different for everyone and that’s okay. The road is winding and uneven, so don’t blame yourself. You are worth more than depression tells you. You can control the direction of your journey. Happiness is attainable and you deserve it. Sometimes, it just takes kicking the bottle, not the bucket, to get there. --- ***NEXT UP:*** Be sure to check out the next post by Shonet at [livingwellwithepilepsy.com ](http://livingwellwithepilepsy.com)for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay posts](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) you may have missed. [Share your story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Mar 19 EBR Posts, Side Effects **Tags:** anticonvulsant side effects, depression --- ### [Time to go camping](https://livingwellwithepilepsy.com/epilepsy-news-and-research/time-to-go-camping.html) **Published:** July 28, 2010 **Author:** Jessica K. Smith **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/07/DSCN3874.jpg "DSCN3874 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/fitnessandepilepsy/4-reasons-to-exercise-when-you-have-a-chronic-illness.html/attachment/dscn3874)Ah, the warm summer breeze. The smell of cut grass and bug spray. It’s that time of year again when kids from all over will head to camp. But what about the kids that have seizures every day? These kids can’t go to camp, right? Or can they? Well, it turns out they can. The Epilepsy Foundation and chapters all over the country work with local camps to set a week or more that is dedicated to kids with epilepsy. This allows the camps to create a situation that is safe for the campers and still allows kids the freedom that comes from swimming, hiking, boating and more. For a list of camps in your area visit the [Epilepsy Foundation’s Spotlight on 2010 Summer Camps](http://www.epilepsyfoundation.org/epilepsyusa/magazine/Issue2-2010/summercamp2010.cfm). So pack your bathing suit, don’t forget your meds, and get ready to toast marshmallows around the fire. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Camp, News and Research --- ### [An inside look at Steve Wynn and Joey's Song](https://livingwellwithepilepsy.com/epilepsy-news-and-research/an-inside-look-at-steve-wynn-and-joeys.html) **Published:** November 27, 2010 **Author:** Jessica K. Smith **Content:**  [![](http://3.bp.blogspot.com/_E8vqQ--lvIQ/TO--GlZhr5I/AAAAAAAAAJ4/A5cPIyyQF1c/s200/2192377919_c6faa2ed0d_m.jpg)](http://www.stevewynn.net/)Steve Wynn [](http://stevewynn.net/)In March of 2010, Michael Gomoll lost his son suddenly to [Dravet’s Syndrome](http://www.ninds.nih.gov/disorders/dravet_syndrome/dravet_syndrome.htm), a rare form of epilepsy. Gomoll then established [The Joseph Gomoll Foundation](http://www.joeyssong.org/) to honor his son, and began preparing for the release of the Joey’s Song project. One of the leading supporters in the Joey’s Song project has been [Steve Wynn](http://www.stevewynn.net/). You may know Wynn from his work with The Dream Syndicate, a band that–along with REM and the Replacements–practically invented the American indie rock scene of the 1980s. Or maybe you tuned in when he played on the Late Show with David Letterman earlier this year. In 25 years, Wynn has released at least that many albums and has seen over 300 of his songs recorded. He has been prominently featured in Rolling Stone, Mojo, Uncut, Entertainment Weekly, People, The Los Angeles Times, New York Times and countless other publications all over the world. I took a few minutes to talk with Michael Gomoll about the [Joey’s Song](http://www.kickstarter.com/projects/122897883/joeys-song-putting-an-end-to-seizures-through-musi) project and Steve’s involvement. Mike told me, “I wrote Steve directly because I am a fan \[of his\] and Joey’s story hit home with him. I have only found a couple artists with a more direct tie to seizure disorders, most are just moved by our story. But really, we reached out to Steve because he is a music legend and Steve said yes.”   [![](http://livingwellwithepilepsy.com/wp-content/uploads/blogger/_E8vqQ--lvIQ/TOqdnCyQJjI/AAAAAAAAAJs/W_bMOyQP6dI/s200/splash_cover.jpg)](http://livingwellwithepilepsy.com/wp-content/uploads/blogger/_E8vqQ--lvIQ/TOqdnCyQJjI/AAAAAAAAAJs/W_bMOyQP6dI/s1600/splash_cover.jpg)Northern Agression In addition to Joey’s Project, Wynn has been busy working on his latest album titled, “[Northern Agression](http://www.stevewynn.net/northern_aggression.php).” When asked Steve said that, “We certainly had the freedom to let it fly [on this album]. This was me and the Miracle 3 doing what we do best–colliding against each other and our surroundings, not holding back and barely taking stock until all was done.” **US Release of Northern Agression: November 30** [To hear a clip of Resolution](http://www.stevewynn.net/splash.php), the lead trak visit [Pre-order album](http://www.stevewynn.net/northern_aggression.php) from Yep Roc Records [To buy album](http://www.stevewynn.net/northern_aggression.php) [To view Steve Wynn’s anthology](http://www.stevewynn.net/) Let me know if you want to hear more about Dravet Syndrome, Joey’s Song, or any of the artists participating in the project. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Dravet Syndrome, News and Research --- ### [Maria's Story: My Son Mark and His New Diagnosis of Epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/my-son-mark-and-his-new-diagnosis-of-epilepsy.html) **Published:** April 10, 2017 **Author:** Guest Contributor **Excerpt:** This personal epilepsy story was submitted by Maria. She's hoping for encouragement as her son and his new diagnosis of epilepsy. Comment to show support. **Content:** [![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/04/12239676_10206348262478730_9079788879928064810_n-300x169.jpg "12239676_10206348262478730_9079788879928064810_n – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/personal-epilepsy-stories/my-son-mark-and-his-new-diagnosis-of-epilepsy.html/attachment/12239676_10206348262478730_9079788879928064810_n)*The story below was submitted by Maria. She is hoping for a little support as her son was recently diagnosed with epilepsy. Encouraging comments are welcome!* #### Maria’s Story My youngest son Mark who is 30 years old with Down’s Syndrome and non-verbal was diagnosed with Epilepsy/Grand Mal seizures on March 18, 2017. He started having these episodes on January 9, 2017. After having a sleep study done, and many trips to the Neurologist he was finally admitted to St. Joseph’s Hospital in Phoenix on the EMU unit where he was finally diagnosed and we had some answers. I feel like I have been hit by a train and like I am living a nightmare. Has not been easy wrapping my head around this as I am a single mom and have been raising him by myself since he was born. No support system. Thank you for listening. #### New Diagnosis of Epilepsy For anyone who was recently diagnosed there are some great resources right here at Living Well With Epilepsy: - Get the basics at [Epilepsy 101](http://livingwellwithepilepsy.com/epilepsy-101) - Learn about [Finding a Treatment](http://livingwellwithepilepsy.com/finding-a-treatment) - Find out how the [Epilepsy Storylines App](http://livingwellwithepilepsy.com/epilepsy-storylines) can help #### Your turn Take a minute to show Maria she is not alone. You can submit your comments below. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Family, Grand Mal / Tonic Clonic --- ### [Epilepsy Blog Relay™: Caring for a sick spouse](https://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-caring-for-a-sick-spouse.html) **Published:** June 1, 2017 **Author:** Guest Contributor **Excerpt:** We have all felt it, that tiredness and loneliness that comes from taking care of a sick spouse. But when you have a spouse with epilepsy, life takes on a whole new meaning. **Content:** [![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/04/fam-pic-300x289.jpg "fam pic – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/epilepsy-blog-relay-caring-for-a-sick-spouse.html/attachment/fam-pic)***This post is part of the Epilepsy Blog Relay™ which will run from June 1 to June 30, 2017. Follow along!*** #### Shannon’s Story We have all felt it, that tiredness and loneliness that comes from taking care of a sick spouse. But when you have a spouse with epilepsy, life takes on a whole new meaning. My husband, Jake, of nineteen years, never took a day off & was never sick. Then in early 2015, Martin Luther King Day to be exact, he had the holiday off and was staying home with our baby at the time. My older 2 girls and I were getting ready to leave the house, when Jake ran into the bathroom after feeling like he was going to be sick. The next thing I knew, my oldest daughter, Andee, who was 16 at the time, came running and screaming that something was going on with Dad. I ran into the bathroom and found my husband in a full on grand mal seizure. I yelled at my girls to go get the neighbor and call 911. I stayed with Jake and ended up having to give him mouth to mouth as he never started breathing on his own after the seizure. The ambulance finally arrived after what seemed like forever. The EMT’s loaded Jake up in the ambulance and I rode with him to the Hospital. He didn’t come around for about another 45 minutes. Then he wanted to know what was going on, he had no short term memory. After spending 3 days in the hospital the Doctors knew nothing and sent us home. Since this time, Jake has had many more seizures and even spent 9 days in the hospital this last fall on [long term monitoring](http://livingwellwithepilepsy.com/2015/emilys-perspective/emilys-perspective-help-child-eeg.html). Still, we have no answers. [![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/04/samsumg-064-1024x768.png "samsumg 064 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/epilepsy-blog-relay-caring-for-a-sick-spouse.html/attachment/samsumg-064) #### Better Together The helpless feeling that comes with not being able to help your spouse is heartbreaking. I hate seeing him come home from work every night, being exhausted and only able to do about half of the work that he used to do. One thing this has all taught me, is to be more proactive and rely on those around me for help. I had to learn that it is okay for my 18 year old daughter to check cows or go with her Dad to make sure that he is safe. I have learned that I can drive in big cities on my own. I have learned so many things that I relied completely on Jake for in the past. While I know that he would rather be healthy and feel good, we are learning to adjust and find a rhythm for our new life. Don’t get discouraged with a sick spouse. Learn new things and find a new rhythm. You will find that no matter what happens, if you have a good attitude, together you can conquer anything. --- **NEXT UP:** Be sure to check out the next post tomorrow by Clair at . For the full schedule of bloggers visit [livingwellwithepilepsy.com](http://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). **TWITTER CHAT:** And don’t miss your chance to connect with bloggers on the #LivingWellChat on June 30 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, Grand Mal / Tonic Clonic, Jun 17 EBR Posts **Tags:** Epilepsy Blog Relay --- ### [Epilepsy Blog Relay™: A lifetime of epilepsy challenges](https://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-epilepsy-challenges.html) **Published:** November 14, 2017 **Author:** Guest Contributor **Excerpt:** Gail's Story: I've had epilepsy for over 45 years. I have grand mals and petit mals. I asked if seizures change over your lifetime and my doctor said "Yes!" **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/11/13903263_10206970662376053_232268446687342908_n-300x300.jpg "13903263_10206970662376053_232268446687342908_n – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/epilepsy-blog-relay-epilepsy-challenges.html/attachment/13903263_10206970662376053_232268446687342908_n)**This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from Nov. 1 to Nov. 30, 2017. Follow along!** #### Gail’s Story I’ve had epilepsy for over 45 years. I have grand mals and petit mals. Epilepsy never interfered with my life. I received my Bachelor’s degree, then married and had our daughter. I was always involved in school, church and the community. If I had a seizure I was always positive. #### A lifetime of epilepsy Recently, I asked my Epileptologist, “can seizures change over your lifetime because I was seizure free for so long. She said “Yes they can!”. I asked her this because over the past 7 years I haven’t been able to work and have had many medication changes. I have finally been 6 months seizure free. I have to thank my husband and daughter because they are worried and always watching over me. My family of mom, brothers and sister have also been watching over me too. I think the community, including nurses, teachers, firemen and parents need to learn first aid for grand mals. My prayer for you is to try and remain positive and put one foot in front of the other. --- **NEXT UP**: Watch for Carey’s story on [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com). For the full schedule of bloggers participating in the Epilepsy Blog Relay™ visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). **TWITTER CHAT:** And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, Grand Mal / Tonic Clonic, Nov 17 EBR Posts --- ### [Sarah's Story: Grand Mal Seizures](https://livingwellwithepilepsy.com/epilepsy-stories/sarahs-story-grand-mal-seizures.html) **Published:** March 17, 2013 **Author:** Jessica K. Smith **Content:** [![](http://livingwellwithepilepsy.com/wp-content/uploads/2013/03/photo-3.jpg)](http://livingwellwithepilepsy.com/wp-content/uploads/2013/03/photo-3.jpg)I was diagnosed with epilepsy at the age of 8 and have coped with it ever since. Initially, my epilepsy was a burden, however I am in the process of accepting what I have. I am also trying to help others do the same. At present, I take a drug called Keppra. The drug is currently keeping my seizures stable. I have been fortunate to be seizure-free for 4 years. But I do experience shaking episodes frequently that tire me a lot of the time. Either way, I know life must go on and am in a position to tell my story from my perspective. For further info you can go onto my blog. You can read more in Sarah’s own words at: ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Stories, Grand Mal / Tonic Clonic **Tags:** Grand Mal Seizure, Keppra --- ### [Epilepsy Blog Relay: Tiffany on Epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/tiffany-on-epilepsy.html) **Published:** November 23, 2018 **Author:** Guest Contributor **Excerpt:** My epilepsy may not consume my life, yet it keeps my adventurous and daring soul from running free. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/10/IMG_1530-225x300.jpg "IMG_1530 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/portfolio/nov-22-tiffany/attachment/img_1530)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) ***which will run from November 1 through November 30. Follow along!*** #### Tiffany’s Story As Susan Vreeland once said, “Where there is no human connection, there is no compassion. Without compassion, then community, commitment, loving-kindness, human understanding, and peace all shrivel. Individuals become isolated, the isolated turn cruel, and the tragic hovers in the forms of domestic and civil violence. Art and literature are antidotes to that.” With similar resolve, I am writing as part of a group of world-changers blogging to reduce the stigma of epilepsy at [**Living Well With Epilepsy**](https://livingwellwithepilepsy.com/). After reading the post below, please look forward to tomorrow’s post as well! Each blogger may have different stories, but our stories are all pieces of the same puzzle. #### How It Feels to be Epileptic Me (Written at Age 16) I am a blessed one. My epilepsy does not consume my life like many other patients, yet that does not mean that it does not affect my life. Its presence holds me back from letting my adventurous and daring soul run free. Yet meanwhile, it has molded the clay of my heart and personality. The day that I became epileptic was no different than any other spring day in Louisiana: warm, beautiful, and stuffed with humidity. At the computer in my fourth grade classroom I sat, when suddenly my mind began to stir like a root beer float, fizzy and filling quickly to the brim. Suddenly, a force propelled my body one way and then another. I became temporarily blind, mute, and almost deaf for I could barely hear screams and murmurs around me. I felt like I was falling backwards into a rabbit hole, as if just my head was doing a hundred backflips and front flips simultaneously. Finally I awoke, finding myself cradled in my teachers’ arms on the floor and surrounded by my classmates’ frightened faces. Some mouths gaped open while others shivered, but all looked at me like I was an alien from outer space. It was their fear that confirmed the instance that to me had seemed like an impossible nightmare as reality. I’ve had many more seizures since fourth grade. Over time I began to get used to the seizures. We began to learn which precautions I needed to take, and an increase of my dosage protected me for a wonderful, seizure-free FOUR years. Then, three days before my sixteenth birthday my epilepsy reemerged with new triggers and strength. I was upset as several new boundaries and limitations in my life were set. My excited plans to go to college in the future were discouraged and considered unwise in my condition. With every couple months of not having a seizure, I built up hope in my heart only to have it crushed by yet another seizure. Yet with these experiences I learned so many important lessons. You see, it is not the bad experiences that have inspired me to write about my epilepsy, but it is what I have learned from them that has formed my identity and made me into who I am. It was with every seizure that I saw the good in everyone around me. It didn’t matter who my classmates were in class; when I had a seizure, they wanted to help me. It was evident in their eyes, their arms outstretched to help me to the ground, the times they would ask afterwards if I was ok, or the quiet way they showed understanding and respect. Also, it made me realize how short and unpredictable life is. I could not wake up from a seizure one day. Just like after those seizure-free four years I thought I knew how the next days and months of my life were going to go, we all tend to see the future with eyes of today. Yet, life can change in an instant. This inspired me to give what I can to the world every day and try to inspire those around me to do the same. Lastly, my epilepsy has helped me realize the importance of positive thinking. Anyone can focus on their own individual struggles in their life; whether physical or spiritual, big or small we all have them, but we must strive to look at the blessings we have experienced and to encourage each other through life’s challenges. Sometimes people ask me why I smile so often and my explanation is simple: when you truly realize how much God loves you, how can you suppress the immense happiness within your heart? I have people in my life who love me, a comfortable home, a fantastic school, and plenty of food to eat. I believe that we can let the difficulties in our life shape us into better people. Many people look at epilepsy with a pessimistic view, but I can honestly say as an epileptic that for me it has been not just a struggle, but more importantly, a true blessing. --- ***NEXT UP:*** Be sure to check out the next post by Elaine at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com) for more on epilepsy awareness. For the full schedule of bloggers visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/epilepsy-blog-relay). **TWITTER CHAT:** Save the date for the #LivingWellChat on December 6 at 12 Noon ET. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/11/EBR-Nov18-150x150.png "EBR - Nov18 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/november-2018-participants)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our generous sponsors and partners! [Become a Sponsor ](https://livingwellwithepilepsy.com/2018-19-media-kit-_all) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Nov 18 EBR Posts --- ### [Epilepsy Blog Relay: Brain Tumor Survivor writes her first book](https://livingwellwithepilepsy.com/epilepsy-stories/brain-tumor-survivor-writes-her-first-book.html) **Published:** March 25, 2019 **Author:** Guest Contributor **Excerpt:** Sierra is 23 years old and is a brain tumor survivor. She was born with a Hypothalamic Hamartoma and had daily, gelastic laughing seizures. **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/01/image1-3-300x300.jpeg "image1-3 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=19666)This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) ***which will run from March 1 through March 31. Follow along!*** #### Sierra’s Story Hello Everyone! My name is Sierra. I am 23 years old and am a brain tumor survivor. I was born with a Hypothalamic Hamartoma and had daily, gelastic laughing seizures. I wasn’t diagnosed with epilepsy until I was 4. My tumor was “rare” at the time so it was hard finding a doctor to remove my tumor. Thankfully, we found Barrow Institute in Arizona, where my tumor got removed at age 8, in 2004. Since then I have been seizure free. However, it left me with social anxiety, poor social skills, and learning disabilities. I had a difficult time in school to learn, and had no friends. I got bullied nonstop and never had someone to be my friend. This happened from the day I returned to school without a tumor. I felt more insecure in myself. In high school it all continued. --- **Related: [Tips to feel less isolated and alone after epilepsy diagnosis](https://livingwellwithepilepsy.com/2019/guest-posts/tips-to-feel-less-isolated-and-alone-after-an-epilepsy-diagnosis.html)** --- However, I graduated high school 6 months early! Recently, I wrote my very first book that talks about all of my struggles and hardships. It is titled “Weird Girl With a Tumor”. It’s available on Amazon. I hope it helps and encourages those going through similar experiences like I have. Please Check it out! --- ***NEXT UP:*** Be sure to check out the next post by Abby at [livingwellwithepilepsy.com ](http://livingwellwithepilepsy.com)for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay posts](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) you may have missed. [Share your story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Mar 19 EBR Posts **Tags:** brain surgery, Brain tumor, Hypothalamic Hamartoma --- ### [Epilepsy Blog Relay: A chef shares his experience with epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/a-chef-shares-his-experience-with-epilepsy.html) **Published:** March 22, 2019 **Author:** Guest Contributor **Excerpt:** Stephen's job requires him to stand for more than 8 hours on his feet. This can be difficult since he is a chef with epilepsy. **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2014/06/STEPHENS-CHEF-CARd-300x267.jpg "STEPHENS CHEF CARd – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/stephens-chef-card)This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) ***which will run from March 1 through March 31. Follow along!*** #### Stephen’s Story As a chef, my job requires me to stand over 8 hours on my feet. I live with epilepsy and have poor circulation from my legs to my heart. I found the most difficult time of day was the end of my shift at home was when it was time to go to bed. A few months ago, I lost sleep every night through the summer. Then, one evening, I was at my work table and felt an aura. It was as if someone took a ball and passed it from my right head through to my left side. I spoke up and informed my supervisor of the bakeshop and she said I should sit and take a break. I drank a bottle of water in seconds and returned to work. I was working for an hour and it was time to take my half hour break. I gathered a little food and went out to the patio. As I sat down the sunset and thunder clouds were approaching. There was darkness and then the seizure. When I came to, it felt as though dozens of people were surrounding me, from Firefighters and EMS to people from work. I was taken from the sidewalk that seemed to hold me down. I just didn’t have the strength to rise. I was placed in an ambulance and the EMS asked what me my name and date of birth. After being brought to the emergency room, I was released to go home. As I was leaving I had a seizure that had me fall backward. I then was admitted to the hospital, stayed overnight and released the next day. I’m hoping to stay seizure-free but at the same time, I can’t believe it will not happen again. #### Stephen Piorkowski Epilepsy Scholarship I have started the Stephen Piorkowski Epilepsy Scholarship. This scholarship has supported 3 students on their journey to college in the last 2 years. It is an honor to see a scholarship recipient succeed and become more involved with Epilepsy. --- ***NEXT UP:*** Be sure to check out the next post by Angie at [livingwellwithepilepsy.com ](http://livingwellwithepilepsy.com)for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay posts](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) you may have missed. [Share your story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Guest Posts, Mar 19 EBR Posts --- ### [Epilepsy Blog Relay: Kat's take on medical marijuana and epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/kats-take-on-medical-marijuana-and-epilepsy.html) **Published:** March 18, 2019 **Author:** Guest Contributor **Excerpt:** Kathryn shares personal anecdotes about her seizures and memory loss. It includes a candid discussion about medical marijuana as a treatment for epilepsy. **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2015/05/Kathryn-Slagle-300x300.jpg "Kathryn Slagle – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/portfolio/june-6-kathryn-slagle/attachment/kathryn-slagle)This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) ***which will run from March 1 through March 31. Follow along!*** #### Kat’s Blog [Kat’s Temporal Lobe Diaries](https://ktslagle.wordpress.com/) is a blog by Kathryn Slagle, formerly known as Kat’s Faerie Tales. She covers personal issues including epilepsy and medical marijuana. Kathryn was diagnosed with temporal lobe epilepsy in 1997. She has been a vocal advocate since then. Kathryn lives in Pennsylvania with her husband, daughter, son, and two cats. She writes about her life with seizures, cannabis, and much more. #### Medicated “Medicated” is about the effects epilepsy and seizure meds have on memory and daily living. Kathryn shares personal anecdotes about her seizures and memory loss. It includes a candid discussion about medical marijuana as a treatment for epilepsy. Medical marijuana has drastically reduced the amount of seizures Kathryn has. Despite marijuana’s reputation for causing short-term memory loss, it helps control her seizures which reduces confusion and memory loss for Kathryn. This blog is about the fine line of hope and fear one must walk when living with seizures. That includes taking anti-epilepsy meds, vitamins, and cannabis. [READ MORE ](https://ktslagle.wordpress.com/) --- ***NEXT UP:*** Be sure to check out the next post by Jamie at [livingwellwithepilepsy.com ](http://livingwellwithepilepsy.com)for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay posts](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) you may have missed. [Share your story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Mar 19 EBR Posts, Treatments **Tags:** medical marijuana --- ### [Epilepsy Blog Relay: Brain surgery reminds Teo of the importance of adaptability](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-blog-relay-brain-surgery-reminds-teo-of-the-importance-of-adaptability.html) **Published:** March 11, 2019 **Author:** Guest Contributor **Excerpt:** Teo shares his story of brain surgery. He shares the importance of flexibility and the ability to adapt to every situation. **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/06/neurosurgery-2-e1552234859194-275x300.png "neurosurgery-2 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/neurosurgery-2)This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) which will run from March 1 through March 31. Follow along!*** #### Teo’s Story On March 15, 2012, I had brain surgery in Montreal. I was preparing for what would be my first neurosurgery and everyone was hoping that it would be the end of my epilepsy. (Since then I have had a second surgery at UCSF hospital in California.) Both times I remember being surprised at how I was feeling going into surgery. I was also surprised that everyone around me seemed to be more worried than I was. I felt like the star of some show; my surgery was all people were talking about. It was a strange feeling and didn’t seem real until the night before when I went to sleep in the rented apartment in Montreal then woke up early the next morning for surgery. #### Calm before the storm #### Epilepsy Surgery: [Epilepsy Surgery](https://www.mayoclinic.org/tests-procedures/epilepsy-surgery/about/pac-20393981) [Who should be evaluated for surgery](https://my.clevelandclinic.org/health/treatments/5015-who-should-be-evaluated-for-epilepsy-surgery) [Pediatric Epilepsy Surgery](https://www.chop.edu/treatments/epilepsy-surgery) [Study on costs and clinical outcomes](https://www.sciencedirect.com/science/article/pii/S0887899415002635) Somehow I knew everything would be ok but the level of anxiety in the atmosphere was hard to ignore. They were going to cut open my head and saw through my skull. That was the most disturbing part of the 10 hour long procedure. Sawing through the skull was like going to the dentist and having that drill vibrate throughout your head. It all sounds so loud, like when you’re on an airplane with headphones or swimming under water in noisy pool or feeling waves crash over you at the beach. This was my first experience with all this neurosurgery business and I’ll tell you about the 2nd surgery too but my experience with this and the lead up to the eventual flop was different from what you might expect. I remember more of the people around me and feeling unusually calm. Even though everyone around me was anxious and I could feel their panicky unease and nervousness, I felt like I was watching a movie or walking through a museum with someone explaining the art to me. Afterwards my mom and brothers came into see me in recovery. It was very emotional. I couldn’t help but laugh at my huge bandaged head. Family support makes the worst situation bearable and even fun. Memories I have of fun things we did as a family during the 2 weeks before my first surgery are some of the best times spent as a family, like the way everyone gets along at Christmas and all the arguments and disagreements between siblings are temporarily forgotten or put on pause. --- **Related: [Coping with Depression](https://livingwellwithepilepsy.com/2019/epilepsy-blog-relay/mar-19-ebr-posts/coping-with-depression.html)** --- #### Support is essential for brain surgery Brain surgery is definitely a serious procedure and going through it twice really made me appreciate the support from my family, friends and girlfriends at each time. All the preparation the doctors tried to organize was nothing compared to the love shown by the people around me. With a fight like neurosurgery on the line, having family who love you in your corner is priceless. Arguably one of the scariest experiences of my life and moments which seemed to freeze time was right after my second surgery in San Francisco in 2012. After my surgery, I was in recovery in a bed when the neurologist came in to check on me and see how I was doing. My operation was on the left side of my brain and had affected the right side of my body including my mouth which I’m still recovering from. My right side is less sensitive than my left and this applies to feeling heat, I first noticed this after my operation when washing my hands and not realizing how hot the water was until it started to steam! #### The scariest moment The scary moment I mentioned is when the neurologist came into my recovery room. He said hi and asked me a basic question like ‘how are you feeling?’ I wanted to tell him that I felt okay considering that they had just sewn my head back and I had 13 metal staples holding things together. I opened my mouth to speak but nothing came out. I had the words in my mind and I had understood the question but I couldn’t speak. My body felt suddenly covered in goosebumps and my world felt flipped upside down! The first thought I had was “please let this be temporary!” I felt terrified that I wouldn’t be able to speak again. I turned to my mom who was in the room with me. My face must’ve shown what I was thinking and feeling because she was immediately at my side asking me what was wrong and if I could speak. I shook my head trying to get the words out. They were on the tip of my tongue but I couldn’t get them out. I almost wished to have my seizures back if I could speak again. It was like the software was working but the hardware and muscles weren’t responding. Speech therapy, positive motivation and the will to get back to who I was helped me climb back up. This made me think about how difficult and stressful it must be to develop epileptic seizures later in life because of an accident or some other cause. I was diagnosed with epilepsy at 3 years old so seizures while I sleep is the life I know and what I’m used to. #### Flexibility and adaptability are essential My ex-girlfriend recently contacted me and told me that she started to have seizures in her sleep at age 39. Some of her doctors say she has epilepsy. She’s confused and upset. Stressed and afraid. It started as repetitive migraines then the nocturnal seizures started. This reminded me of the importance of flexibility and the ability to adapt to every situation. No matter how bad things seem it could always be worse. Look at the bright side of every situation. I had a taste of what a life-changing experience epilepsy can for some people. When life turns an unexpected way you always have more than one option. Adapt and learn to move with life’s natural flow --- ***NEXT UP:*** Be sure to check out the next post by Jade at [livingwellwithepilepsy.com ](http://livingwellwithepilepsy.com)for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay posts](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) you may have missed. [Share your story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Guest Posts, Mar 19 EBR Posts, Treatments **Tags:** brain surgery, epilepsy surgery, surgery --- ### [Epilepsy Blog Relay: Raising a child with multiple chronic conditions](https://livingwellwithepilepsy.com/epilepsy-stories/child-with-multiple-chronic-conditions.html) **Published:** March 8, 2019 **Author:** Guest Contributor **Excerpt:** Rachel's son Andrew has multiple chronic conditions including Cerebral Palsy, Lennox Gastaut Syndrome and Cortical Visual Impairment. She shares a sneak peek into raising a child with special needs. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/01/drew1811-e1552008153848-227x300.jpg "drew1811 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=19703)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) ***which will run from March 1 through March 31. Follow along!*** #### Rachel’s story Andrew is my first born, I was 30 years old and more than ready to begin my life as a mom when he came into the world. On the day Andrew was born, I was 38 weeks pregnant and was expecting a healthy baby. From the moment he was born Andrew was showing signs of distress. He was bruised, had a misshaped head, and he grumbled and grunted when he breathed. His cry was high pitched, but even with all of that he was perfect to me, and I was ecstatic. I was now a mom. When Andrew was two days old things would change dramatically. Unknown to me, Andrew had a seizure and turned blue in front of the nurse. He was rushed off to the NICU where he would remain for the next 14 days. For whatever reason, Andrew’s brain had bled. Andrew is now 18 years old and I am now a veteran mom. #### Multiple Chronic Conditions Andrew cannot talk or walk. Those brain bleeds damaged his brain and left him diagnosed with Cerebral Palsy, Lennox Gastaut Syndrome and Cortical Visual Impairment. He can do very little unless I am there to help him. With all of Andrew’s struggles, and even as I adjusted to life as a mom of a child with special needs, Andrew has always been first and foremost my child. He is a central part of our family of six, and we live a very full, active life. --- **Related:** [**8 valuable (and brutal) life lessons everyone should learn**](https://livingwellwithepilepsy.com/2018/livingwell/life-lessons-everyone-should-learn.html) --- #### Our nightly walk One of Andrew’s favorite activities is for me to push him outside in his wheelchair throughout our neighborhood. We usually take our walks after dinner-time, when the lighting is dim and the air is cool. Andrew is at his best then. I know Andrew enjoys our time together as we travel our usual route through the neighborhood. This is our happy time. I know this because Andrew sings most of the way. He’s content and that makes me happy. These moments when I know Andrew is content are when I am most at ease. We were out on a walk the other day and just about halfway through our walk, a car approached. The car passed. It was our neighbors, so I waved hello. In the car were a teenage boy and his dad. The boy was learning how to drive. And with the pass of that car, in that quick moment, the happy moment I was having walking with my son came to a screeching halt. It hits me. Just like that, I am taken somewhere else, I can feel my heart racing. I have tears coming from my eyes all because that boy is driving. Yet, my son is in his wheelchair and is being pushed by his mom. That boy is experiencing life like most everyone else. He is learning to drive. My son should be driving. He’s that age. He should be driving. The questions start to race through my mind. Why does Andrew not get to drive? Why did this happen? Why does this particular moment hit me so quick and so hard? I am after all a veteran mom. We’ve been through a lot. I’ve been told things that no mother wants to hear about their child and I’ve taken it all as it comes, but this moment that is so simple is knocking me off my feet and bringing tears to my eyes. Why? It takes me a few minutes and my mind has run through all sorts of emotions; sadness, pain, anger, resentment, and back to pure heartbreak. I want Andrew to experience everything every other boy does, and he won’t. I try to get myself together. We’re still on our walk except I’m not paying any attention to Andrew and to where we are walking. My mind is in a place far away. If I had been paying attention, I would see that right then we were at Andrew’s favorite part of our walk. We were around the block, where the pine trees line the road. Andrew doesn’t see much, but I know he looks up every night at that exact time, in that exact spot and follows with his eyes that row of pine trees that line the road. Andrew recognizing those trees during this part of our walk is a milestone for us. He is still singing too. He is delighted with our walk and that simple feeling that I can sense from him helps redirect all those emotions I am feeling. He is happy. Really happy. --- **Related:** [**When its okay to be a helicopter parent**](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/epilepsy-blog-relay-that-one-time-where-its-okay-to-be-a-helicopter-parent.html) --- #### What I learned One of the most important things I’ve learned over all these years as Andrew’s mom is that it is healthy for me to grieve my loss, and to feel sadness for what has happened. I can have temporary lapses. Emotions don’t necessarily surface during an obvious moment, they can sneak up on you when you least expect them. It is okay for me to let any emotions I am feeling to come to the surface. That is okay. It is actually needed. What I’ve learned most of all though, is that Andrew needs me now. He really needs me present in the moment with him. He deserves that, every child does. --- ***NEXT UP:*** Be sure to check out the next post by Rachel E. at [livingwellwithepilepsy.com ](http://livingwellwithepilepsy.com)for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay posts](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) you may have missed. [Share your story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** About Epilepsy, Epilepsy Stories, Mar 19 EBR Posts **Tags:** Lennox-Gastaut Syndrome, LGS, multiple chronic conditions, Special Needs --- ### [Epilepsy Blog Relay: Ways to help with medication costs](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-blog-relay-ways-to-help-with-medication-costs.html) **Published:** March 7, 2019 **Author:** Guest Contributor **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/01/leads-on-e1551964437454-300x255.jpg "leads-on – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2019/epilepsy-blog-relay/mar-19-ebr-posts/epilepsy-blog-relay-ways-to-help-with-medication-costs.html/attachment/leads-on)***This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) ***which will run from March 1 through March 31. Follow along!*** #### Alison’s Story Since my diagnosis with epilepsy in 2006, I feel like I’ve tried every medication possible to try and stop my seizures. My neurologist added Fycompa in 2016, I’m still not seizure free, but it’s helped decrease my seizures. When I started taking Fycompa, there were issues for the first few months relating to insurance pre-authorization and the cost of the medication. I had been taking the medication for two months without a problem. My neurologist had given me a discount card for the medication, which made it cost only $10 for those two months. #### An unwelcome surprise #### Resources: - [Eisai Patient Assistance Program](https://us.eisai.com/about-eisai-inc/eisai-assistance-programs) - [Sunovion Patient Assistance Program](http://www.sunovionsupport.com/) - [UCB Patient Assistance Program](https://ucb-usa.com/Patients/Financial-Assistance) - [LivaNova (VNS) Patient Assistance Program](https://us.livanova.cyberonics.com/patient-resources) - [Lundbeck Patient Assistance Program](https://www.lundbeck.com/us/our-commitment/patient-assistance) - [American Epilepsy Society Patient Assistance Resources](https://www.aesnet.org/clinical_resources/treatments/drug_assistance_program) - [Epilepsy Foundation Patient Assistance](https://www.epilepsy.com/living-epilepsy/247-helpline/patient-assistance) - [Partnership for Prescription Assistance](https://www.pparx.org/) - [RxAssist](https://www.rxassist.org/) The next time I went to pick up my medication, the pharmacist told me “That’ll be $600.” I was shocked. $600 for 30 pills?! I asked if my insurance covered this medication and it turned out since it wasn’t a generic medication, my neurologist had to fill out pre-authorization forms. I couldn’t afford $600, so I now had to go without my medication – the one that worked the best at keeping my seizures away. I informed my neurologist about this issue, and he filled out the pre-authorization paperwork for my insurance company. It took over a month for the insurance company to process the paperwork, so again, I was without my medication during this time. Once everything was processed, I went to pick up my medication, and the pharmacist told me “That’ll be $100.” I paid for it this time, since I wanted to start retaking it, but I didn’t have an extra $1200 to cover the medication for the year. I called my insurance company to see if the medication was covered why the cost was still so high, they told me because Fycompa fell into a specific medication category it would be $100 a month. I couldn’t afford the cost, and I was frustrated since this medication seemed to be working the best at limiting the number of breakthrough seizures I was experiencing. #### Finding resources I asked my neurologist if he knew of any way to bring the cost down since he had previously given me the $10 discount cards. He informed me of the Eisai Patient Assistance Program, which included Fycompa and a few other medications. I looked into the program, and I ended up applying to see if I would qualify for it. The application has a section for your doctor to fill out, you as the patient to fill out, and you must provide proof of income, if applicable. It took about a month to hear back from the program about my application, and I’ve now been paying $0 for Fycompa since 2016. I’m so thankful my neurologist informed me about the Eisai Patient Assistance Program as it’s made my medication affordable and I didn’t know anything about the program or programs like it. I want to make sure others know about it, so here are some resources about patient and medication assistance programs: **Patient Assistance Resources:** [Eisai Patient Assistance Program](https://us.eisai.com/about-eisai-inc/eisai-assistance-programs) [Sunovion Patient Assistance Program](http://www.sunovionsupport.com/) [UCB Patient Assistance Program](https://ucb-usa.com/Patients/Financial-Assistance) [LivaNova (VNS) Patient Assistance Program](https://us.livanova.cyberonics.com/patient-resources) [Lundbeck Patient Assistance Program](https://www.lundbeck.com/us/our-commitment/patient-assistance) [American Epilepsy Society Patient Assistance Resources](https://www.aesnet.org/clinical_resources/treatments/drug_assistance_program) [Epilepsy Foundation Patient Assistance](https://www.epilepsy.com/living-epilepsy/247-helpline/patient-assistance) [Partnership for Prescription Assistance](https://www.pparx.org/) [RxAssist](https://www.rxassist.org/) --- ***NEXT UP:*** Be sure to check out the next post by Rachel at [livingwellwithepilepsy.com ](http://livingwellwithepilepsy.com)for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay posts](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) you may have missed. [Share your story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** About Epilepsy, Epilepsy Stories, Mar 19 EBR Posts --- ### [Epilepsy Blog Relay: Epilepsy and Fear](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-blog-relay-epilepsy-and-fear.html) **Published:** March 6, 2019 **Author:** Guest Contributor **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/01/headshot-grey-e1551401484979-300x231.jpg "headshot-grey – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2019/epilepsy-blog-relay/mar-19-ebr-posts/epilepsy-blog-relay-epilepsy-and-fear.html/attachment/headshot-grey)****This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) which will run from March 1 through March 31. Follow along!*** #### Beth’s Story Beth tries to post regularly about a number of issues, ranging from her interests in business anthropology, talent management, career advice and her own journey with epilepsy. What is true, regardless of her post, is that she examines issues in a frank, but nurturing manner – trying to “tell it like it is,” while still providing an interesting, or different points of view on topics on her forum. Join Beth during the Epilepsy Blog Relay as she discusses her own journey with Epilepsy, and its impact on her own fears and struggles as she strives to be an active wife, mom, friend and co-worker, who just happens to have epilepsy. [READ BETH’S STORY](http://anthrosuit.blogspot.com/) ***NEXT UP:*** Be sure to check out the next post by Alison at [livingwellwithepilepsy.com ](http://livingwellwithepilepsy.com)for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay posts](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) you may have missed. [Share your story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Mar 19 EBR Posts --- ### [Epilepsy Blog Relay: Searching for my passion - my quarter life crisis](https://livingwellwithepilepsy.com/epilepsy-stories/searching-for-my-passion-my-quarter-life-crisis.html) **Published:** March 3, 2019 **Author:** Emily Lawrence (Nee Donoghue) **Excerpt:** You know how it is sometimes, you wake up feeling like your life is on repeat. Emily talks about finding your passion during a quarter-life-crisis. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/02/51974366_2245493142370887_8047449779787005952_o-e1550020655326-300x300.jpg "51974366_2245493142370887_8047449779787005952_o – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=19864)***This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) which will run from March 1 through March 31. Follow along!*** #### Emily’s Story January was a hard month. I went into the New Year with a very open mind. ‘2019 will be the one ‘ I said. Dan and I moved into our house in December, our wedding day is 24th February 2019. It felt good. I had this positive feeling, a glowing one. It will be the year I make time to do what I love. #### Quarter-life Crisis But you know how it is sometimes. Things happen, you have days where things get too much and some people think you just deal with things ‘wrong’ and you’re ‘too sensitive’ or you ‘expect too much.’ I have a high expectation for things and if things go slightly wrong I do beat myself up over it, but we are all different aren’t we? How many days do you wake up feeling like your life is on repeat? You wake up to your alarm, brush your teeth, take a shower, drink your tea or coffee, go to work, come home, eat dinner, watch TV if you have time, go to bed, and repeat. I am known by blogging friends and readers as the one who helped set up a support group but I feel I live a fairly ‘ordinary’ life. I work, I own a house, and I try to get on with life as an Epileptic in the most normal way possible. But, I do struggle to keep everything together when it feels like I’m not actually doing anything, going nowhere, and living some life I do feel disconnected from. I have some very close friends, I have a loving family and Dan is fantastic, but I still feel misunderstood. If I could stand in front of the whole population of this entire planet and beyond, and stress to them what life is really like with a medical condition, I honestly would. If there is some way I can express to everyone how it feels, I would jump for that opportunity. The opportunity to help people understand, to allow me and the other millions of people around the globe be heard. But I guess for now I will stick to my writing until I get that opportunity. I am a very outgoing individual, my passion is CHANGE. I want to be the change in the world of stigma. I want people to understand what it is like ‘Living the Purple life’ as I call it. Writing for Living Well with Epilepsy is a huge passion of mine and it has been since I first started. It is 7 years this year since I gained the title of a ‘Writer’, and it is all I have ever wanted to do. I have learned that your passion doesn’t always have to be your career, but something that you do in your spare time to keep you happy. #### Start now, start small If you’re truly passionate about something, you need to get started now. Don’t put things off. It doesn’t mean you have to quit your job; I work full time but make sure I give myself a bit of time each day to dedicate to writing. If you’re truly passionate, you need to carve out some regular time to do what you love. The key to following your passion is consistency. Maybe you have always wanted to be a dancer? That doesn’t mean you need to go out and buy all the equipment and expensive tap shoes–maybe look online, do some practice at home, or speak to a friend who maybe does dance. Do some steps at home and then pay for classes if you want to take it further. 15 minutes every day of some warm-ups to get you into the groove. It’s these small steps, done regularly, which will add up to huge results. Same with photography: don’t go out and spend thousands of pounds on equipment. Start with your camera phone or a cheap camera to see how you feel. Buy some books or take a look on the internet for ideas first. I am still searching for ways to enjoy the things I am passionate about and you know what holds me back the most? Time. I don’t make time for myself, my weekends are full of yes things I want to do like meeting friends, going out with Dan, seeing family. But I don’t give myself time to practice piano, take photos, write as much, and go walking. #### Leave space in your schedule A completely full schedule can make you feel stuck and unable to follow your dreams. Ask yourself, do you really need to do everything in your schedule? We often take on commitments that we don’t really need to do, and we continue to do them out of habit or guilt. Look back over your schedule from the past month. My calendar is full, every hour of the day is packed with meeting people, going out, wedding things that I could quite easily ask Dan to do but I don’t want to fill his days up, so out of guilt, I do them! Look in your diary–What items are you really excited about doing and love to do? Those can stay. Everything else should be scrutinised. Do you really have to do this task or can it be delegated (like my wedding jobs)? Is there a way you can do it faster, ask for help, or do it less often? Eliminating even one or two unnecessary activities per month can free up the time to follow your passion. #### What is your passion and does it help your life living with epilepsy? Writing and Photography help me a lot. SO let’s make time to do them! --- ***NEXT UP:*** Be sure to check out the next post by Soo at [livingwellwithepilepsy.com ](http://livingwellwithepilepsy.com)for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay posts](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) you may have missed. [Share your story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://secure.gravatar.com/avatar/5523d28ae8bbaedc9d082d51d29393ca490379cd31464b99ab3c7d50a49362ac?s=300&d=mm&r=g) Emily Lawrence (Nee Donoghue) 25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England. Emily's Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10. Based in UK. [See Full Bio](https://livingwellwithepilepsy.com/author/emilyd) [ ](https://livingwellwithepilepsy.com/author/emilyd) **Categories:** Epilepsy Stories, Mar 19 EBR Posts --- ### [Epilepsy Blog Relay: Creative ways to raise epilepsy awareness](https://livingwellwithepilepsy.com/epilepsy-stories/shonet-increases-epilepsy-awareness-in-new-ways.html) **Published:** March 2, 2019 **Author:** Guest Contributor **Excerpt:** Most people are not aware of an illness until it touches them personally. So, Shonet started thinking about creative ways to raise epilepsy awareness. **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2019/01/img-20181110-wa0014_3-e1550804814922-300x300.jpg "img-20181110-wa0014_3 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/4-ways-to-manage-exhaustion.html/attachment/img-20181110-wa0014_3-2)This post is part of the*** [***Epilepsy Blog Relay™***](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) ***which will run from March 1 through March 31. Follow along!*** #### Shonet’s Story It was a crisp fall evening when I heard the doorbell ring. Thinking it was an early ‘home from school’ surprise from my daughter, I ran up to the door to get my usual squeal and tight hug. Instead I was greeted by a young, energetic teenager talking to me about a donation program for girls. Being #thedayofthegirl and my passion around gender and equality, I was all ears. \[Especially, when he asked me to confirm if I am 21…why thank you, tell me more ;-)\] As we discussed the program, we got talking about how I spend my time these days. I mentioned the work I do around epilepsy awareness to which he uneasily said, “Oh, is that the thing with the lights?” While he was somewhat right, I found his answer to be quite interesting. But, I also understood how he could be unsure about what epilepsy was. #### Why is there a need to raise epilepsy awareness In reality, most people are not aware of an illness until it touches them personally. Given that epilepsy is not a disease that people disclose very readily, it stands to reason that the majority of our population would not know how many people are impacted by it. 1 in 100 people in Canada, just in case you were wondering. In the US, approximately 3.4 Million people are living with epilepsy and worldwide, well that number is estimated to be [1% of the population](https://www.census.gov/popclock/world). #### Information is power So I jumped at the opportunity to educate him about it and did a whole information session! He was amazed by all there was to it, thanked me for my openness in sharing my experience and went on his merry way feeling [more empowered](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/nov-18-ebr-posts/colleens-mom-reminds-us-that-knowledge-is-power.html). That interaction got me thinking about how we can use creative ways to spread the word about epilepsy and in turn help people understand epilepsy better. #### Share your story The biggest way I raise epilepsy awareness is by talking about it and by sharing my story. I am an open book as a person. What you see is what you get. So, it probably comes more naturally to me, than to someone who is more private. Whether it comes easy or not, there’s no denying that people love stories and what better way than to tell your own! Talk to your family, your friends, your co-workers, your neighbours or sometimes even strangers, like I did in my experience above. It will be a great emotional outlet for you and leave them with something to think about and share forward. [Share your story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) #### Share your time Another way is by volunteering with my local epilepsy non-profit. These organizations have several programs that support fellow epileptics, from social interaction/recreation groups to entertainment events and new initiatives that reach out to the public and educate them about epilepsy. Think about how your skills might contribute toward the cause and help them to further their message. You not only work towards a common cause and help the community, but you also welcome support, [make connections](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/mar-18-ebr-posts/experience-with-epilepsy-creates-a-whole-new-family-of-supporters.html) and enhance your own skills. I think about activities I like doing and try to incorporate ways of highlighting epilepsy within those aspects of my life. Whether it’s spending time with my daughter and painting a pumpkin purple or showcasing the book I am reading to de-stress, anything goes. So give a thought to the many interests you have and how epilepsy can play a role in some way. It fulfills your passion, initiates conversation and indirectly gets the word out. #### Spread the word online It goes without saying in this day and age that social media platforms are a given. I use every avenue I have, to get my message out there. I try to participate in online challenges/initiatives and promote them the best I can. I connect with people online who share the same interests as me and discuss how we can help the community move things forward. And the last one couldn’t be more obvious; it’s what I am doing right now! I write about my story and experiences with epilepsy through blogs and articles and share them with the world. I have always enjoyed reading and writing but blogging has never been something I have done before. Over the last year, in my attempts to get the word out, I decided to make the leap. I guess my education in English Literature finally paid off 😉 #### Your turn So there you go, that’s how I spread awareness in my own way. If you have any new ideas about raising epilepsy awareness, I would love to hear them as well. After all, there is always strength in numbers and our collective efforts will give power to more voices that need to be heard. So if you are ready, go ahead, [share your story](https://livingwellwithepilepsy.com/share-your-epilepsy-experience), the world is waiting to hear it! --- ***NEXT UP:*** Be sure to check out the next post by Emily at [livingwellwithepilepsy.com ](http://livingwellwithepilepsy.com)for more on epilepsy awareness. You can check out any of the [Epilepsy Blog Relay posts](https://livingwellwithepilepsy.com/category/epilepsy-blog-relay) you may have missed. [Share your story ](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** About Epilepsy, Epilepsy Stories, Mar 19 EBR Posts --- ### [Epilepsy Blog Relay™: Seeing Seizures from a New Perspective](https://livingwellwithepilepsy.com/epilepsy-stories/leilas-ideas/epilepsy-blog-relay-seeing-seizures-from-a-new-perspective.html) **Published:** November 29, 2015 **Author:** Leila Shields **Excerpt:** Though I've lived with Epilepsy for most of my life, watching a family member experience seizures for the first time was harder than I ever imagined. **Content:** [![044](http://livingwellwithepilepsy.com/wp-content/uploads/2015/11/044-300x225.jpg "044 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/11/044.jpg)***This post is part of the [Epilepsy Blog Relay™](http://livingwellwithepilepsy.com/) which will run from November 1 through November 30. Follow along and add comments to posts that inspire you!*** Happy Epilepsy Awareness month! I had a specific plan for my post this month. Life then smacked me in the face and reminded me that plans don’t always work out. Sometimes, you have to enjoy the ride with no plan. You see, earlier this year, my grandfather was diagnosed with cancer. Recently, he has started having seizures. I have a wide knowledge of seizures. I’ve had them. I’ve woken up in tears in a [postictal](http://www.epilepsy.com/learn/epilepsy-101/what-happens-during-seizure) state. I’ve spent weekends lying on the couch, missed events, and continue to battle my brain and my medications to live a [normal](http://livingwellwithepilepsy.com/2015/leilas-ideas/12975.html) life. I’ve watched seizures happen and felt the terror of knowing I can’t do anything to stop it. But when it’s my family, it’s different. Listening to my grandpa recall the fear he has during his aura is haunting. Knowing the exact frustration he feels when he can’t control his body saddens me. Commiserating with him, while it bonds us, is painful. You see, I can write about [Epilepsy Stigma](http://livingwellwithepilepsy.com/category/leilas-ideas). I can speak to my experiences and advocate for others. I can help others who are dealing with the complex thoughts and emotions that epilepsy brings. However, I have never had to do those things for immediate members of my family. I’ve never been so connected to someone who knows exactly what seizures are like. While I’ve always wished that I had someone so close who understood, I never would have willed it to happen. Now that my grandpa is that person, to be honest, it’s painful. I’m slowly learning how to manage my knowledge of seizures, my emotions about them and my grandpa, and how to best help him. It’s been therapeutic for both of us to have someone to complain to—he now understands the struggle that I have dealt with for most of my life and is thankful to have someone who can empathize. I’m realizing that my knowledge of seizures doesn’t replace the fear and uncertainty that they bring. To all those who care for those of us with seizures: thank you. Even if you don’t fully understand our experiences, your support of our physical, emotional, and mental health is immeasurably helpful. I understand it’s probably scary and confusing at times. That’s okay. Whether you’ve been a support for 10 months or 10 years, it can always be scary. Your willingness to always continue is a blessing. To all of those who have seizures and Epilepsy: make sure to thank your support systems. I realize that I probably don’t do that enough. It takes a lot to understand what is going on in my brain and then support efforts to fix it. Be patient with them. We may not realize how scary our seizures look from the outside. Regardless of the awareness we raise, seizures can always bring a certain amount of nerves with them. Educating people around us is important, but we also must understand that all the information in the world doesn’t replace our emotions…especially when it involves those we love the most. I’m so thankful to be able to spend time with my grandfather in this unique way. I’m also grateful to have the opportunity for a new perspective: that of a patient support, not just a patient. I more fully understand what life looks like for those who have aided me for so long and who aid [millions](http://www.cureepilepsy.org/aboutepilepsy/facts.asp) of individuals with Epilepsy around the world. Let’s all remember to raise awareness for Epilepsy, the seizures it brings, and the emotions it evokes. ***Thanks for following the Epilepsy Blog Relay™ all month and spreading Epilepsy Awareness. Did you miss a post? For the full schedule of bloggers visit [livingwellwithepilepsy.com/epilepsy-blog-relay](http://livingwellwithepilepsy.com/epilepsy-blog-relay). And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET.*** ![author avatar](https://secure.gravatar.com/avatar/4cebf381fbce646cb0dbabef2348282b941c67524a3f03f08d6e328fa6c976cb?s=300&d=mm&r=g) Leila Shields Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania. [See Full Bio](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/leila.zorzie) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://lzorzie) **Categories:** Epilepsy Blog Relay, Leila's Ideas, New Years Resolutions, Nov 15 EBR Posts **Tags:** epilepsy, Epilepsy Awareness Month, Epilepsy Blog Relay, epilepsy stigma, Leila's Ideas, seizures --- ### [The Americans with Disabilities Act and Epilepsy](https://livingwellwithepilepsy.com/aboutepilepsy/americans-with-disabilities-act-epilepsy.html) **Published:** December 10, 2018 **Author:** Soo Ihm **Excerpt:** Learn more about how the Americans with Disabilities or ADA, helped remove barriers for people with disabilities, and for people with epilepsy in particular. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/12/Screen-Shot-2018-12-09-at-3.01.29-PM-640x594.png "Screen Shot 2018-12-09 at 3.01.29 PM – Living Well With Epilepsy")](https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html) #### President George H.W. Bush and the Americans with Disabilities Act With the passing of Former President George H.W. Bush, it is a good opportunity to raise awareness of the Americans with Disabilities Act (ADA), which was signed into law in 1990 and was a huge first step to gaining equal rights for people with disabilities.1 The ADA, as it stands today, encompasses five titles, or provisions, that address various areas of concern to achieve equality.2 These include: 1. Employment 2. State and Local Government 3. Public Accommodations and Commercial Facilities 4. Telecommunications 5. Miscellaneous #### How the ADA is meant to work Following the signing of the ADA into law, the opportunities for people with disabilities, and for people with [epilepsy](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/nov-18-ebr-posts/5-tips-for-dealing-with-an-epilepsy-diagnosis.html) in particular, opened up. Discrimination on the basis of disability became illegal and a culture of inclusion became possible in the United States. Thanks to the ADA, [those of us with qualified disabilities in the US were could no longer be fired from employment](https://livingwellwithepilepsy.com/2018/livingwell/work/when-a-seizure-happens-at-work.html) and the simple fact of having epilepsy could no longer be a barrier to getting a position. We could even request reasonable accommodations to ensure our safety at work. #### A culture of discrimination persists Although this is the law now, much discrimination unfortunately still exists and goes unreported. People with disabilities are still under- or unemployed at higher rates than the general population. In particular, according to the Disability Statistics Report, in 2016 the employment gap between people with disabilities and those without was 41.1% and is on the rise.3 #### On the ADA and Epilepsy Regarding public accommodations, there has been much better progress. People with disabilities are allowed in most public institutions and businesses. Those institutions have had to make their buildings accessible to all. Still, there have been occasions where people have had to fight for the right to enter a public place. In the same way, state and local governments are required to provide equal access to programs and services to people with disabilities. This includes access to affordable housing and access to transportation. Many times, people with disabilities get left behind when it comes to housing and transportation, especially in high-rent neighborhoods or rural communities without good infrastructure. This provides a great challenge when you can’t drive and there is no reliable transportation system. The Telecommunications Relay Service provides an easy way for people with hearing and speech disabilities to communicate over the phone as well as have television access. This perhaps was the easiest Title to implement with the fewest problems. #### The ADA continues to evolve Since the signing of the ADA, there have been changes/updates to the law, which were signed into law by George W. Bush on September 25, 2008. In effect, he changed the law to broaden the definition of disability.4 I hope one day the we will come to realize the vision of President George H.W. Bush. In his words, “Let the shameful wall of exclusion finally come tumbling down.” --- #### References: 1. [https://en.wikipedia.org/wiki/Americans\_with\_Disabilities\_Act\_of\_1990](https://en.wikipedia.org/wiki/Americans_with_Disabilities_Act_of_1990) 2. 3. [https://disabilitycompendium.org/sites/default/files/user-uploads/2016\_AnnualReport.pdf](https://disabilitycompendium.org/sites/default/files/user-uploads/2016_AnnualReport.pdf) 4. [https://en.wikipedia.org/wiki/ADA\_Amendments\_Act\_of\_2008](https://en.wikipedia.org/wiki/ADA_Amendments_Act_of_2008) ![author avatar](https://secure.gravatar.com/avatar/d52fbb50f14201cb1c4aa52292adb331e89b5086a1db0c1711fed2af943b5367?s=300&d=mm&r=g) Soo Ihm Soo writes the blog Soo’s Epilepsy Corner and is a regular contributor to Living Well With Epilepsy. She lives in Orange County, California. She enjoys traveling, and has been to Europe three times. Her next journey will be just as interesting, with the RNS. [See Full Bio](https://livingwellwithepilepsy.com/author/sooihm) [ ](https://livingwellwithepilepsy.com/author/sooihm) **Categories:** About Epilepsy **Tags:** #discrimination, ADA, epilepsy --- ### [Epilepsy Blog Relay: The temporal lobe epilepsy (TLE) experience](https://livingwellwithepilepsy.com/epilepsy-stories/temporal-lobe-epilepsy-or-tle-experience.html) **Published:** November 16, 2018 **Author:** Guest Contributor **Excerpt:** Nancy remembers how her temporal lobe epilepsy (TLE) seizures always began with a feeling of deja vu and a sensation of falling. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/09/Nancy-Lowe-300x188.jpg "Nancy-Lowe – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/nancy-lowe)***This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from November 1 to November 30, 2018. Follow along!*** #### Nancy’s Story I was diagnosed with epilepsy at the age of 7 – both grand mal and temporal lobe. My mother also had temporal lobe epilepsy as a child and all of my four siblings were eventually diagnosed with it too. We all experience it in unique ways and this has given me a lifelong fascination with this type of epilepsy and – in common with a lot of others I think – an interest in consciousness, the mind and religious or ‘mystical’ experiences. --- Related article: **[Seizure education is a family affair](https://livingwellwithepilepsy.com/2016/epilepsy-blog-relay/nov16rachelehrhardt.html)** --- #### Temporal Lobe Epilepsy I am now 41, an organic gardener and garden designer and my epilepsy has mostly all faded away. However the impacts of my epileptic years are still quite strong. The main way it affected me as a child was through what I dubbed ‘[funny feelings](https://livingwellwithepilepsy.com/2010/epilepsy-news/picture-book-on-epilepsy-now-in-spanish.html)’. These are also referred to as ‘auras’ and I think ‘partial complex seizures’ – seizures in the temporal lobe. These experiences for me always began with a strong feeling of deja vu and a sensation a bit like falling off the edge of a roller coaster – an ‘oh no, here we go again’ feeling. When I was little, this would be quite frightening. Sometimes at the beginning, I would get a smell – I remember pepper. One time at least I got whispering voices, many, many voices all at once. Always, I would feel like half of my consciousness was split off into another place, leaving the other half in my body. In this other place, I would be able to look around, walk around, explore or sit and observe. They varied in strength and so I was sometimes able to ignore it enough to continue functioning in the real world – continue with a conversation, for example. Other times, it was too strong and so I would have to sit tight and go with it until it wore off. When I was in my late teens – I apologise now for what I’m about to admit – I had a mystical experience. I’ve got to be honest – I feel like I’m admitting to murder or something awful like that just by writing this down! I’ve always hidden this experience for fear of being thought a nutter! But I know what I felt and it was joyous, incredible, a feeling of one-ness and that I was in touch with the answer to everything – like the universe had taken a truth serum and all I had to do was think of the question and it would tell me. I felt euphoric, overwhelmed by the conviction that the universe is a loving thing. #### How TLE can manifest As strange as this might sound, it has brought meaning and direction for me. I think the insights I gained in that moment – and from subsequent similar experiences – have validity in the world, so I am not terribly interested in what electrical activity may or may not have been going on in my brain at that moment. But I am fascinated to know more about the experience of temporal lobe epilepsy and how it relates to other, historical descriptions of so called mystical experience or scientific revelation – eureka moments if you like. I have explored buddhist meditation and have researched the shamanic experience (through books only). I have spent the last 20 years learning about the science of ecosystem dynamics – how the world works. I am passionately driven to learn about the world and its consciousness, in order to discover whether the ideas that were impressed upon me through my epileptic experiences are true. Or perhaps more accurately – in an effort to remember what I learnt! I accept that perhaps I’m chasing phantoms, so to speak, but it’s a fascinating journey. Made challenging, of course by my hopeless epileptic memory! However, I enjoy my work and ongoing studies in ecology and I find satisfaction in my increasing ability to bring health and wellbeing to the world around me. #### Here are a few more stories on living with [Temporal Lobe Epilepsy](https://livingwellwithepilepsy.com/?s=TLE) --- **NEXT UP:** Be sure to check out the next post by Soo at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/start-here) **TWITTER CHAT:** Save the date for the #LivingWellChat on December 6 at 12 Noon ET. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/11/EBR-Nov18-150x150.png "EBR - Nov18 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/november-2018-participants)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our generous sponsors and partners! [Become a Sponsor ](https://livingwellwithepilepsy.com/2018-19-media-kit-_all) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Nov 18 EBR Posts, Temporal Lobe Epilepsy **Tags:** temporal lobe epilepsy, TLE --- ### [Epilepsy Blog Relay: A screenwriter shares her experience with epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/screenwriter-shares-her-experience-with-epilepsy.html) **Published:** November 14, 2018 **Author:** Jessica K. Smith **Excerpt:** Alisa Kennedy Jones, a screenwriter and author of GOTHAM GIRL INTERRUPTED found herself diagnosed with epilepsy at the age of forty. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/11/IMG_3722-e1542168093917-640x635.jpg "IMG_3722 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/fitsnstartspod)***This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from November 1 to November 30, 2018. Follow along!*** #### Alisa’s Story Alisa Kennedy Jones is a screenwriter and a brand strategist for many clients you may have heard of including Tommy Hilfiger, General Electric, Colgate-Palmolive, Coca-Cola, Sephora, Disney, Citibank, Golden Books, Electronic Arts, and Marvel. She is also an American memoirist, blogger, novelist, and in her words “an awkward public speaker”. In 2010, at the age of forty, Alisa was diagnosed with a severe form of epilepsy. Alisa notes, “my seizures are the kind most often portrayed in the media, meaning the afflicted person falls to the ground and thrashes around until some brave-hearted Samaritan comes to the rescue.” #### What is epilepsy? In Alisa’s words, “Simply put, it’s an overabundance of electricity in the brain. Less simply put, it’s a serious chronic neurological disorder characterized by sudden, recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated with atypical electrical activity levels in the brain.” According to the [Mayo Clinic](https://www.mayoclinic.org/diseases-conditions/epilepsy/symptoms-causes/syc-20350093), “Epilepsy is a central nervous system (neurological) disorder in which brain activity becomes abnormal, causing seizures or periods of unusual behavior, sensations, and sometimes loss of awareness.” #### Gotham Girl Interrupted Alisa has just released a collection of comedic essays [*GOTHAM GIRL INTERRUPTED* (Imagine!/Penguin Random House)](https://www.amazon.com/Gotham-Girl-Interrupted-Misadventures-Motherhood-ebook/dp/B079R3GYGY/ref=sr_1_1?s=books&ie=UTF8&qid=1535740673&sr=1-1&keywords=gotham+girl). Below you will find a brief excerpt: [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/10/41OeTqKX-sL-e1540935410290.jpg "41OeTqKX-sL – Living Well With Epilepsy")](https://www.amazon.com/Gotham-Girl-Interrupted-Misadventures-Motherhood-ebook/dp/B079R3GYGY/ref=sr_1_1?s=books&ie=UTF8&qid=1535740673&sr=1-1&keywords=gotham+girl)*I can’t really blink my answer to the EMT about having taken anything (mostly because I take everything), so I croak a whisper up to him as best I can, “I-nuh-staz . . .”* *“A what?” he says, leaning down now as though I am whispering a code word for entry into a secret society.* *I try again, “uh sppzzazzz . . .”* *He cocks his head, looking quizzical. “A spaz?”* *I close my eyes. I open my eyes.* *He suppresses a smile and says, “You’ve had a seizure.” To his partner, a guy I can’t quite see, he rattles off, “Status epilepticus . . . blah-blah-dee-blah-blah . . .” Everything sounds like molasses now. “. . . Dislocated jaw, compound facial, cranial, dental fractures and lacerations . . .”* *Processing his words, all I can do is blink in a Morse code of my own making: Good God, why couldn’t I have fallen on my big bag instead of my face? What’s the point of having a big bag if it doesn’t at least function as a pillow or a helmet?* *Then he is back talking to me, trying to channel his most upbeat but sorry self: “There are things they can do . . . implants, prosthetics . . .”* *Prosthetics? Dear me, prosthetic what? His words trail off again, and I can see him realizing that just before this moment, maybe only twenty minutes ago, I was probably a very differ- ent girl than I am now. And I just want to tell him, “Don’t be sad, hot-hair-ambulance guy. This isn’t my rst brush with the electric.”* #### Brand new podcast [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/11/FnS-300x300.jpg "FnS – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/fitsnstartspod/attachment/fns)I have teamed up with Alisa on a brand new project. We are starting a podcast about living with epilepsy. We’ll be talking about all the funny, weird, and sometimes uncomfortable things that happen to the millions of us living with epilepsy. Stay tuned for our first episode wherever you get your podcasts! --- **NEXT UP:** Be sure to check out the next post by Jess at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/start-here) **TWITTER CHAT:** Save the date for the #LivingWellChat on December 6 at 12 Noon ET. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/11/EBR-Nov18-150x150.png "EBR - Nov18 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/november-2018-participants)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our generous sponsors and partners! [Become a Sponsor ](https://livingwellwithepilepsy.com/2018-19-media-kit-_all) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Stories, Nov 18 EBR Posts **Tags:** temporal lobe epilepsy, TLE --- ### [Epilepsy Blog Relay: Déjà Vu and temporal lobe epilepsy in real life](https://livingwellwithepilepsy.com/epilepsy-stories/deja-vu-and-temporal-lobe-epilepsy.html) **Published:** June 25, 2018 **Author:** Guest Contributor **Excerpt:** At 29, I began to experience mysterious episodes of dé­jà vu followed by nausea and exhaustion. It took doctors 5 yrs and a tonic clonic seizure to diagnose these episodes as epilepsy. **Content:** **[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/05/sheilajohnson-1-300x290.jpg "sheilajohnson-1 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/portfolio/june-22-david-monnerat/attachment/sheilajohnson-1)This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from June 1 to June 30, 2018. Follow along!** #### Sheila’s Story At 29, I began to experience mysterious episodes of [dé­jà vu](https://livingwellwithepilepsy.com/2012/personal-epilepsy-stories/an-epilepsy-story-living-with-tle.html) and hallucinations followed by nausea and exhaustion. The only thing I could remember was stringing random words together to form incomprehensible sentences. Primary care physicians were useless. They did random tests and guessed at conditions. I received a different diagnosis with each new doctor: social anxiety disorder, a sulfite allergy, and my all-time favorite, early menopause. Seriously, I was once referred to a gynecologist but never to a neurologist. #### Temporal Lobe Epilepsy Five years later, I had my first and only [tonic-clonic seizure ](https://livingwellwithepilepsy.com/2018/livingwell/relationships/in-sickness-and-in-health.html)and got an accurate diagnosis: [temporal lobe epilepsy](https://www.mayoclinic.org/diseases-conditions/temporal-lobe-seizure/symptoms-causes/syc-20378214). Turns out the episodes were focalized seizures. Like I suspected, they had nothing to do with menstruation. Language comprehension, naming, and recall are cognitive functions regulated by the temporal lobe. Hence, the word problems. My brain was the culprit. Medication stopped the seizures but the language problems have gotten worse. I do not articulate well. In fact, I downright suck at it. Words leave my mouth like hippies climbing out of a Volkswagen bug: stumbling, nonconforming, and yes, at times, dirty. I mix up words. I say things backwards. I forget words. Words hang at the tip of my tongue. “Close the milk after you put away the fridge door.” Ugh. I randomly blurt out words I had been trying to recall hours or even days earlier. “Burnt Sienna!” It took me a week to remember a simple name for a Crayola crayon color. I once said congress of the cow instead of congregate. Oops. In the case of tip of the tongue, I ask for help. “What do you call average people who aren’t experts at something?” Novice? No. Layman? Yes! #### Living with it I recently told my boss to enjoy “hot gods and manburgers” over the holiday weekend. We had a good laugh. Years ago, such mistakes upset me. I hated sounding like a fool but I’m over it now. I found ways to cope with the disappointment and frustration. First and most importantly, I stopped beating myself up. Just because I say “hot gods” doesn’t mean I am stupid. The second is I stopped panicking and have slowed down. It’s not a race. If I blunder a sentence, I pause, regroup, and calmly start over. I used to ramble on trying to fix the mess, just making it worse. I used to just stop short. #### Stimulating my brain I’m trying to be proactive. I enrolled myself in “articulation boot camp” to stimulate my lazy brain. I read books on random topics, like entrepreneurialism. It was kind of a snoozer but the exposure to new ideas and words seems worthwhile. I recently discovered audio TED Talks. They are like verbal coaching. The presenters have a limited amount of time to articulate concepts. Last week, I listened to a talk on plastic manufacturing and one on the benefits of smiling. I subscribe to Webster’s Word of the Day. Today it’s slumgullion, which is a meat stew. Once in a while I try to explain why I like a piece of abstract art to someone. That is a lark. And I practice writing for an hour. Most of the time it is just prose that ends up in the trash but sometimes I churn out something pretty good. #### Are you living with TLE? [Share your story](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) or comment on Sheila’s experience. --- **NEXT UP:** Be sure to check out the next post by Alexis at . **TWITTER CHAT:** Save the date for the #LivingWellChat on June 30 at 7PM ET. [![epilepsy blog relay](https://livingwellwithepilepsy.com/wp-content/uploads/2018/05/june-2018-social-EBR1-150x150.png "june 2018 social EBR(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-participants/attachment/june-2018-social-ebr1)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our [generous sponsors and partners](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-sponsors-and-partners)! [Participate as a November Blogger ](http://bit.ly/Nov18EBRForm) [Become a November Sponsor ](http://bit.ly/1819EBRMk) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Jun 18 EBR Posts, Temporal Lobe Epilepsy **Tags:** deja vu, language comprehension, temporal lobe, temporal lobe epilepsy --- ### [Epilepsy Blog Relay: Alison's post on stigma](https://livingwellwithepilepsy.com/epilepsy-stories/alisons-post-on-stigma.html) **Published:** June 14, 2018 **Author:** Guest Contributor **Excerpt:** Alison writes about stigma and epilepsy on her blog Shed Light on Epilepsy. In her recent post she encourages us to think about our epilepsy in a new way. **Content:** **[![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/05/Facebook-photo-2-300x200.jpg "Facebook photo – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/epilepsy-news/__trashed-4.html/attachment/facebook-photo-3)This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from June 1 to June 30, 2018. Follow along!** #### Alison’s Story While embracing many aspects of life with epilepsy, many of the posts on [Shed Light on Epilepsy](http://www.shedlightonepilepsy.org/) are devoted to observations and constructive ideas about the stigma against epilepsy — culturally based, as well as a product of ignorance. It’s up to us, through open discussions and teaching others, to change the perceptions about epilepsy, eradicating the stigma. #### Excerpt from Alison’s blog “Innovating Strategies to Fight Stigma” explores the dynamic between negative [views about ourselves](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/mar-18-ebr-posts/epilepsy-blog-relay-epilepsy-isnt-my-only-story.html) and perpetuation of the stigma. Not only might [people with epilepsy](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/jun-18-ebr-posts/whitney-asks-the-hard-questions-about-epilepsy-clinical-trials.html) sometimes sense persecution when none exists, but we unwittingly may implant the idea of the stigma to those others who, in fact, don’t think less of us. The challenge is to leave negative self-perceptions behind and innovate the ways we demonstrate that we with epilepsy are as “typical” as anyone. [Don’t miss her latest post!](http://www.shedlightonepilepsy.org/) --- **NEXT UP:** Be sure to check out the next post by Leila at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com). **TWITTER CHAT:** Save the date for the #LivingWellChat on June 30 at 7PM ET. [![epilepsy blog relay](https://livingwellwithepilepsy.com/wp-content/uploads/2018/05/june-2018-social-EBR1-150x150.png "june 2018 social EBR(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-participants/attachment/june-2018-social-ebr1)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our [generous sponsors and partners](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-sponsors-and-partners)! [Participate as a November Blogger ](http://bit.ly/Nov18EBRForm) [Become a November Sponsor ](http://bit.ly/1819EBRMk) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Jun 18 EBR Posts, Stigma --- ### [Epilepsy Blog Relay: Building supportive relationships within the special needs community](https://livingwellwithepilepsy.com/epilepsy-stories/building-supportive-relationships-within-the-special-needs-community.html) **Published:** June 16, 2018 **Author:** Guest Contributor **Excerpt:** Jes now writes Wishes for Mercy to inspire families battling epilepsy and to build supportive relationships within the special needs community. **Content:** **This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from June 1 to June 30, 2018. Follow along!** #### Jes’s Story Jes began her blog, [Wishes for Mercy](http://wishesformercy.com), to share gratitude for all of the volunteers who made her daughter’s Make-A-Wish Trip come true. She now writes to inspire and advocate for families battling epilepsy and to build supportive relationships within the special needs community. Her blog also exists to promote epilepsy awareness and education. #### An excerpt from Wishes for Mercy: This blog post will touch on the tech that has helped in our fight against epilepsy the most routinely (daily). Without the past decade’s electronic [innovations](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/jun-18-ebr-posts/whitney-asks-the-hard-questions-about-epilepsy-clinical-trials.html), we would be years behind in our daughter’s progress towards healing. Not taking into account medical equipment, our first technological assistance came in the form of internet access to the epilepsy community. [Don’t miss her latest post!](https://wishesformercy.com/) --- **NEXT UP:** Be sure to check out the next post by Abby at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com). **TWITTER CHAT:** Save the date for the #LivingWellChat on June 30 at 7PM ET. [![epilepsy blog relay](https://livingwellwithepilepsy.com/wp-content/uploads/2018/05/june-2018-social-EBR1-150x150.png "june 2018 social EBR(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-participants/attachment/june-2018-social-ebr1)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our [generous sponsors and partners](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-sponsors-and-partners)! [Participate as a November Blogger ](http://bit.ly/Nov18EBRForm) [Become a November Sponsor ](http://bit.ly/1819EBRMk) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Family, Jun 18 EBR Posts --- ### [Epilepsy Blog Relay: One family pushing the boundaries of Lennox-Gastaut Syndrome](https://livingwellwithepilepsy.com/aboutepilepsy/family-pushing-boundaries-of-lgs.html) **Published:** June 21, 2018 **Author:** Guest Contributor **Excerpt:** Lili was diagnosed with Lennox-Gastaut syndrome (LGS), a rare and severe form of epilepsy, but therapeutic horseback riding was an activity she could enjoy. **Content:** **[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/06/Gilmore-Family-640x428.jpg "Gilmore Family – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=18511)** **This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from June 1 to June 30, 2018. Follow along! *Living Well With Epilepsy is grateful to Lundbeck, a [Sponsor](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-sponsors-and-partners) of the* [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay).** #### Natalie’s Story Seventeen years ago, I gave birth to a beautiful healthy baby girl who we named Lilias, after my beloved grandmother. We could not have been more thrilled. As new parents, we read and did everything we should for our sweet baby girl. I signed up for mommy and me classes to meet other moms and give Lili the social experience needed as a baby. Everything was great, but at five months old, I can clearly remember the moment I looked around class and thought, “Why does this seem to be getting harder caring for Lili? It should get easier as you progress month to month.” All the other moms were saying it’s getting easier with their babies. But this wasn’t how I was feeling with my baby. Lili seemed fussy and uncomfortable, and ever so slightly not as engaged with her toys. We chalked it off to her having her first ear infection and I’m sure that made her feel crummy. However, one month later, on October 21, 2001, Lili had her first seizure and was admitted to the hospital for six days, where she had spinal taps, EEGs, an MRI and blood draws … pretty much poked all over. On that very day, which I will never forget, the doctor came into the ER and told us our perfect, beautiful baby girl had a very serious and rare seizure disorder called [infantile spasms syndrome](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/epilepsy-blog-relay-miguel-cervantes-of-hamilton-chicago-tells-his-familys-epilepsy-story.html). We needed to start treatment right away. I felt like someone punched me in the gut. What was she saying to us? From that moment forward, Lili had numerous treatments to try and stop her hundreds of infantile spasm seizures, but she continued to seize and we continued to do everything humanly possible to make it better for our beautiful baby girl. Then, sadly, around the age of four, Lili was diagnosed with [Lennox-Gastaut syndrome (LGS)](https://livingwellwithepilepsy.com/2015/epilepsy-blog-relay/epilepsy-blog-relay-diagnosis-of-lgs.html), another rare and severe form of epilepsy. We were told seizures would most probably continue into adulthood and global delays would be imminent. We were then, and still are today, determined to give Lili the best quality of life regardless of how many seizures she has. However, it was a difficult, isolating and devastating time in our lives. She was our first and only child, and we were suddenly thrust into a world we didn’t know about. 17 years ago, we didn’t have the kinds of support for [LGS families](https://www.lgstogether.com/) that there is today. But we read a lot and I searched for ways to help our sweet Lili. #### Therapeutic Horseback Riding While searching, I read all about how therapeutic horseback riding could be an activity for Lili to enjoy while helping to strengthen her. I’ve always loved horses and riding, and thought this would be wonderful for her! I searched numerous places and came upon [Easter Seals](http://www.easterseals.com/) and their therapeutic riding program. I quickly signed Lili up, filled out all the paperwork and got the doctor’s permission. Lili was just three years old when we took her to the farm to ride a horse for the very first time! I so vividly remember this day, the first day of riding for Lili. I was anxious. Lili on a horse. Yikes, she had balance issues, low muscle tone and was on a lot of seizure medications. Never mind having numerous seizures. I suddenly felt panicked thinking, “What have I done!” All the mom worries came rushing forward, but then, suddenly, this charismatic and confident man named Matt came right up to us and said, “This must be Lili Gilmore.” And with that, he instantly took my little baby right away from me and he said, “Lili, we are going to go have fun and ride a horse today!” I’m sure Matt sensed my nervousness as he peeled Lili from my arms and cheerfully got his team ready to help Lili ride her horse. I’m very grateful for someone like that in our lives because I would have been too scared to allow her to do many of those programs. But Matt said to me, “She’s a kid. She can do all of this. There will be four adults with her. And she needs to have fun like everyone else.” I appreciated that from him and I still do. If it hadn’t been for Matt, I think I truly would have limited Lili over the years by not realizing how many adaptive activities she can participate in. His motto has always been that kids just want to have fun and that they can do anything. Some just need certain supports in place to help them achieve this. Without him, Lili would never have been skiing, tubing, or horseback riding. I think the impact that it’s had on us is that—yes, Lili has seizures. And we need to keep her safe. But that just means we need to add extra safety things in for her. But she can still do it. She can still get on a horse or go down a mountain. Matt is an amazing person who has really been a [Change Agent](https://www.lgschangeagent.com/) in our lives and shown us all that Lili can do anything! We are so grateful for Matt and his dedication. Seventeen years later, he continues to advocate and develop numerous programs for special needs kids so they can have fun and participate in sports activities. We are forever grateful to Matt, who has definitely been a clear and obvious Change Agent for our family. Thank you, Matt! *The June 2018 Epilepsy Blog Relay™ was sponsored by* [*Lundbeck*](http://www.lundbeck.com/us) *– a global pharmaceutical company committed to improving the quality of life for those living with brain disorders, including epilepsy. Lundbeck connects people living with challenging seizures at* [*www.LGSTogether.com*](http://www.lgstogether.com/) and through the* [*LGS Together Facebook page*](http://www.facebook.com/LGSTogether)*. If you would like to nominate a Change Agent who has made a difference in your life with Lennox-Gastaut syndrome (LGS), please visit* [*https://www.lgschangeagent.com/*](https://www.lgschangeagent.com/)*.* --- **NEXT UP:** Be sure to check out the next post by David at . **TWITTER CHAT:** Save the date for the #LivingWellChat on June 30 at 7PM ET. [![epilepsy blog relay](https://livingwellwithepilepsy.com/wp-content/uploads/2018/05/june-2018-social-EBR1-150x150.png "june 2018 social EBR(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-participants/attachment/june-2018-social-ebr1)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our [generous sponsors and partners](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-sponsors-and-partners)! [Participate as a November Blogger ](http://bit.ly/Nov18EBRForm) [Become a November Sponsor ](http://bit.ly/1819EBRMk) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** About Epilepsy, Family, Jun 18 EBR Posts, Lundbeck **Tags:** Lennox-Gastaut Syndrome, LGS --- ### [Seizure jokes aren't funny](https://livingwellwithepilepsy.com/epilepsy-stories/jessicas-posts/seizure-jokes-arent-funny.html) **Published:** February 3, 2013 **Author:** Jessica K. Smith **Content:** [![](http://livingwellwithepilepsy.com/wp-content/uploads/2013/02/beyonce-150x150.jpeg "beyonce – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2013/02/seizure-jokes-arent-funny.html/beyonce)I just watched Beyoncé strut her stuff during the SuperBowl Halftime Show. The show was full of so many strobes that the Twitterverse was a-buzz with snarky comments about seizures. I now have a headache after watching the show. But I have to say the headache is more from the comments on Twitter than from the strobes. Seriously, strobes can cause seizures. Seizures can kill. Not cool Beyoncé. Not cool NFL. The flood of bad seizure jokes makes me wonder how may football players, coaches, fans in the stadium and fans watching on television have photosensitive epilepsy. If you think epilepsy is no big deal check out [Epilepsy by the Numbers](http://livingwellwithepilepsy.com/epilepsy-by-the-numbers). You might be surprised. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Jessica's Posts, Photosensitive Epilepsy **Tags:** Seizure jokes, Strobelights --- ### [Epilepsy Blog Relay: Soo looks at how epilepsy treatment has changed over time](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-blog-relay-soo-looks-at-how-epilepsy-treatment-has-changed-over-time.html) **Published:** June 10, 2018 **Author:** Guest Contributor **Content:** **[![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/05/IMG_2893-e1496614362698-300x291.jpg "IMG_2893 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/portfolio/jun-8-sooihm/attachment/img_2893)This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from June 1 to June 30, 2018. Follow along!** #### Soo’s Story I live in Southern California and have had seizures all my life. I write [Soo’s Epilepsy Corner](https://soosepilepsycorner.blogspot.com/) to educate and tell my personal story. #### Excerpt from Soo’s blog We have come a long way in treating people with epilepsy. From crude medications and incantations we now know are useless, we now have an abundance of drugs specifically targeted toward different types of epilepsy. Also, we have surgery as an option as well as implants. Who knows what may be next? [Don’t miss her latest post!](https://soosepilepsycorner.blogspot.com/) --- **NEXT UP:** Be sure to check out the next post by Jessica at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com). **TWITTER CHAT:** Save the date for the #LivingWellChat on June 30 at 7PM ET. [![epilepsy blog relay](https://livingwellwithepilepsy.com/wp-content/uploads/2018/05/june-2018-social-EBR1-150x150.png "june 2018 social EBR(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-participants/attachment/june-2018-social-ebr1)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our [generous sponsors and partners](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-sponsors-and-partners)! [Participate as a November Blogger ](http://bit.ly/Nov18EBRForm) [Become a November Sponsor ](http://bit.ly/1819EBRMk) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Jun 18 EBR Posts --- ### [Epilepsy Blog Relay: Jewel prefers to Live Out Loud](https://livingwellwithepilepsy.com/epilepsy-stories/jewel-live-out-loud.html) **Published:** June 6, 2018 **Author:** Jessica K. Smith **Content:** **[![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/11/IMG_2403-300x298.jpg "IMG_2403 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/jewell-on-living-out-loud.html/attachment/img_2403)This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from June 1 to June 30, 2018. Follow along!** #### Jewel’s Story Jewel writes the blog, [Live out Loud](http://liveoutloud4epilepsy.org/). It is a lifestyle resource for the modern woman and mom. A space committed to building a community which inspires individuals to live healthier lives and conquer parenthood while [increasing awareness of epilepsy](https://livingwellwithepilepsy.com/2016/epilepsy-blog-relay/its-who-i-am.html) around the world. She writes, “In 2008, my life drastically changed. I was diagnosed with a seizure disorder. Over the past several years, I have endured several series of EEG’s, EKG’s and MRI’s in an attempt to classify the types of non-epileptic and epileptic seizures I was experiencing. Like many people diagnosed later in life I had little knowledge of what [Epilepsy](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/jun-18-ebr-posts/living-with-side-effects.html) was and an even limited knowledge about what life would be like living with it.” Today’s post is on family seizure safety. #### Excerpt from “A Checklist For Family Seizure Safety” “After I had [my first seizure](https://livingwellwithepilepsy.com/start-here), I constantly thought about all the possible scenarios that could occur if I had a seizure. My mind raced through the millions of terrifying feelings, all of the questions and possible outcomes that could happen. However, I never thought about what would happen if I were alone with my son during a [seizure](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/mar-18-ebr-posts/epilepsy-blog-relay-seizure-detection-and-prediction.html). Could I ensure my safety and the safety of my son? How could I possibly protect him in such a vulnerable state? Immediately, my mind went into auto drive and I decided to put together a checklist to help my family navigate through the possibility of my son being alone with me during a seizure. Our families are vital in helping manage our seizures so involving them to ensure the safety of everyone is important.” Don’t miss [her latest post!](http://liveoutloud4epilepsy.org/2018/06/06/a-checklist-for-family-seizure-safety/) --- **NEXT UP:** Be sure to check out the next post by Jennifer at . **TWITTER CHAT:** Save the date for the #LivingWellChat on June 30 at 7PM ET. [![epilepsy blog relay](https://livingwellwithepilepsy.com/wp-content/uploads/2018/05/june-2018-social-EBR1-150x150.png "june 2018 social EBR(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-participants/attachment/june-2018-social-ebr1)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our [generous sponsors and partners](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-sponsors-and-partners)! [Participate as a November Blogger ](http://bit.ly/Nov18EBRForm) [Become a November Sponsor ](http://bit.ly/1819EBRMk) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Stories, Jun 18 EBR Posts --- ### [Epilepsy Blog Relay: Kat and living with seizures](https://livingwellwithepilepsy.com/epilepsy-stories/living-with-seizures.html) **Published:** June 5, 2018 **Author:** Jessica K. Smith **Content:** **[![](https://livingwellwithepilepsy.com/wp-content/uploads/2015/05/Kathryn-Slagle-300x300.jpg "Kathryn Slagle – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/portfolio/june-6-kathryn-slagle/attachment/kathryn-slagle)This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from June 1 to June 30, 2018. Follow along!** #### Kat’s Story Kathryn writes the blog, [Kat’s Temporal Lobe Diaries](https://ktslagle.wordpress.com). Kat writes, “Unfortunately I have seizures. It’s simply a part of my life, as much as every other thing.” She goes on to write, “I live in the state of motherhood, just like I live in my tree lined neighborhood. My children keep me sane and drive me crazy.” #### Excerpt from Kat’s blog Kat has participated in the Epilepsy Blog Relay almost for as long as it has been running! Here’s an excerpt from last June’s post: “I went four whole months of consciousness and [normal sleep](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/jun-18-ebr-posts/living-with-side-effects.html) patterns. Now I am back to square one. Square negative one. My brain had an electrical storm and now I will be soft and squishy for days. Sleep will descend like a meteor. My windows are shattered from the impact. I don’t want to admit how quickly doing so much better can go to smashed face into the corner of the sink and bleeding broken on the floor. Fours month wasn’t forever, but I was starting to think it was. Maybe I could go six months without seizure. I would make a sign and take a selfie like all my [Epi Friends online](https://livingwellwithepilepsy.com/2018/epilepsy-blog-relay/jun-18-ebr-posts/epilepsy-blog-relay-life-with-epilepsy-in-kenya.html). Ten seconds later and all that shit has been destroyed. At least my husband was in the bathroom with me. This time I woke up on the floor confused and tired, but unharmed. There is always that at least. My tongue doesn’t even hurt. I didn’t wake up in the hospital naked.” Don’t miss her latest post! --- **NEXT UP:** Be sure to check out the next post by Jewel at [liveoutloud4epilepsy.org](http://liveoutloud4epilepsy.org). **TWITTER CHAT:** Save the date for the #LivingWellChat on June 30 at 7PM ET. [![epilepsy blog relay](https://livingwellwithepilepsy.com/wp-content/uploads/2018/05/june-2018-social-EBR1-150x150.png "june 2018 social EBR(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-participants/attachment/june-2018-social-ebr1)[Living Well With Epilepsy’s](https://livingwellwithepilepsy.com/start-here) **Epilepsy Blog Relay™** is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our [generous sponsors and partners](https://livingwellwithepilepsy.com/epilepsy-blog-relay/june-2018-sponsors-and-partners)! [Participate as a November Blogger ](http://bit.ly/Nov18EBRForm) [Become a November Sponsor ](http://bit.ly/1819EBRMk) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Stories, Jun 18 EBR Posts, Seizure Triggers --- ### [Epilepsy Blog Relay: Seizure Detection and Prediction](https://livingwellwithepilepsy.com/epilepsy-blog-relay/mar-18-ebr-posts/epilepsy-blog-relay-seizure-detection-and-prediction.html) **Published:** March 15, 2018 **Author:** Jessica K. Smith **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/02/epilepsy_dad_profile_pic1-300x300.jpg "epilepsy_dad_profile_pic(1) – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy_dad_profile_pic1)March 14***This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay) which will run from March 1 to March 31, 2018. Follow along!*** #### David’s Story David’s blog, [Epilepsy Dad](http://www.epilepsydad.com/), shares the family’s journey with epilepsy which started in 2014. We were visiting Philadelphia ahead of a move to the city when their son had his first focal seizure. The first seizure is always the scariest, largely because it comes out of the blue and you never know what to expect or what to do when it happens. Since that first seizure, the family has spent months in the hospital, tried countless epilepsy medications, started the ketogenic diet, explored CBD, and they are still trying to figure out what is causing the seizures and get them under control. [Check out David’s Post ](http://www.epilepsydad.com/epilepsy/epilepsy-seizure-detection-prediction/) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Mar 18 EBR Posts --- ### [Epilepsy Blog Relay™: From a Grieving Parent on Graduation Day](https://livingwellwithepilepsy.com/epilepsy-blog-relay/jun-16-ebr-posts/grieving-parent-on-graduation-day.html) **Published:** June 28, 2016 **Author:** Shelby McGrath Myers **Excerpt:** For a grieving parent who has lost a child, the thoughts of an upcoming graduation day (and the day itself) – there are no words to express the pain. **Content:** [![shelby graduation](http://livingwellwithepilepsy.com/wp-content/uploads/2016/06/20160609_082344-e1467076991344-169x300.jpg "– Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2016/epilepsy-blog-relay/jun-16-ebr-posts/grieving-parent-on-graduation-day.html/attachment/20160609_082344)*This post is part of the [Epilepsy Blog Relay™](http://livingwellwithepilepsy.com/epilepsy-blog-relay) which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!* #### Shelby’s Story I always end my blog posts by stating, “Epilepsy will not win”; although, on the day of what would be Clay’s high school graduation this June, Epilepsy will win (at least on that particular day). Clay will not be seated with his classmates in a cap and gown. He will not be grinning, that priceless grin, as he is surrounded by his lifelong friends. He will not be throwing his cap in pure joy, as they announce the graduating class of 2016, and we (his family) will not be crying tears of joy. We, instead, will be imagining what could have been. There are a multitude of graduation ceremonies that will transpire this time of year (kindergarten, elementary, middle school, high school and college). All are events which bring mixed emotions, as they symbolize an end of an era in our childrens’ lives. They are one step closer to “letting go” and, as parents, our thoughts are flooded with memories of their younger years – “where did the time go”, we say? Though, we are excited for what their future will hold and imagine those coming memories. But, for the parents who have lost a child, the thoughts of this upcoming day (and the day itself) – there are no words to express the pain. #### A grieving parent As I sat to write my blog for this month and come up with an idea, there was nothing more that I wanted than to covey my thoughts on upcoming graduation events for the parents (and family members) which are going through grief, just as I and my family are experiencing. My heart goes out to the bereaved parents, for which graduations will never occur, as I am “that parent”, as well. I have found with grief that the anticipation of an event is sometimes worse than the actual day. I am hoping for this to be the case. I will remember that it is a date on a calendar – one day. I will get through this, just like the other milestones that didn’t occur. Our family will survive, and our son Clay, will live on through us and those whose lives which he touched. I will cry the day of graduation and hug our other children a little tighter than usual. I am certain that I will have a lump in my throat, a knot in my stomach and, I am certain, will clutch my “Clayton necklace” a little tighter that day. I will imagine what could have been and how unbelievably sad it is that I (and my family) have to imagine all of these events. “I” am only 1 of so many parents, sadly, who will be doing the same. Remember those graduates that aren’t able to experience this momentous event – and their families who wish that they could. Although, as sad of a day as it will be, I will wait for photographs to appear on social media the day of graduation. I, honestly, cannot wait to see them. The children and families who were a part of Clay’s life and continue to be a part of ours. I will not be “looking” for my son in the crowd, I will be imagining him there celebrating. I have no doubt that he will be looking down with his incredible grin and his memory will live on with each member of his graduating class that was privileged to be a part of his life. …and the day after graduation, “Epilepsy will not win” because his memory and spirit will live on. My family and I will have the joy of celebrating our other childrens’ graduations and, I have no doubt, that he will be right by our side in spirit at those events. --- **NEXT UP:** *Be sure to check out the next post tomorrow at for more on Epilepsy Awareness. For the full schedule of bloggers visit [livingwellwithepilepsy.com](http://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-jun-2016-participants).* **DON’T MISS IT:** *Don’t miss your chance to connect with bloggers on the #LivingWellChat on June 30 at 7PM ET.* ![author avatar](https://secure.gravatar.com/avatar/73af112fa6d5f3cf5fbcb47918045c16eca83822f27c5cdfc1c3279ca6a793cd?s=300&d=mm&r=g) Shelby McGrath Myers Shelby McGrath Myers is the mother to 5 wonderful children – one of whom became an angel due to Epilepsy in Aug 2012. She's founder of Clayton’s Hope Org. Based in USA. [See Full Bio](https://livingwellwithepilepsy.com/author/shelby-mcgrath-myers) [ ](https://livingwellwithepilepsy.com/author/shelby-mcgrath-myers) **Categories:** About Epilepsy, Jun 16 EBR Posts **Tags:** Epilepsy Blog Relay, SUDEP --- ### [Paula's Story: Sage advice from a mom with epilepsy](https://livingwellwithepilepsy.com/life-with-epilepsy/family/paulas-story-mom-with-epilepsy.html) **Published:** February 28, 2015 **Author:** Guest Contributor **Excerpt:** I was born in 1952, and back then, it was still illegal for a woman with epilepsy to get married. When I was young, all I could think about was getting married and becoming a mother. **Content:** > [![Vanessa's Family 065](http://livingwellwithepilepsy.com/wp-content/uploads/2015/02/Vanessas-Family-065-e1425075468548-282x300.jpg "Vanessa's Family 065 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/02/Vanessas-Family-065.jpg)*Vanessa at the Zoo* *The following guest post was submitted by Paula Apodaca. Her site [E. is for Epilepsy](http://epilepsy-paula.blogspot.com/) has been around since 2006. Paula was kind enough to contribute her story on the early days of being a mom with epilepsy.* #### Paula’s Story I have had epilepsy since I was three years old and I would like to share my experience with [epilepsy](http://livingwellwithepilepsy.com/epilepsy-101). I was born in 1952, and back then, it was still illegal for a woman with epilepsy to get married. When I was a young girl, all I could think about was getting married and becoming a mother. Growing up I wanted wedding dolls, or “bride dolls” as we called them. But, my mother and grandmother gently coaxed me away from those ideas. When I grew older, in my teen years, my mother sat me down one day and told me that I could not get married or have children and that I should think of some other goals for my life. #### Pregnancy was not an option Doctors told me that a pregnancy would be debilitating on my body and probably provoke seizures. With new seizures, I would be physically unable to care for a family or children. It wasn’t until years later that doctors admitted this was an erroneous view and that women with epilepsy would have no more risk of being pregnant and delivering a baby than any other woman. Then when I got pregnant, I expected congratulations from my friends and family. However, none of them were pleased. In fact, they did not even throw me a baby shower. They asked me questions like “What if you have a seizure and drop the baby?” or “What if the baby ‘catches’ your epilepsy?” Overall, this depressed me greatly. When I had Vanessa, I went to live with my mother for a while. She was concerned about my skills as a new mother. I suppose she would have been concerned about this anyway. I probably would have wanted her to help with the new baby, but the whole time I keep thinking she didn’t trust me because of my epilepsy. After about a month, she came to the conclusion that I knew what I was doing and she agreed I should go home. I promised I would call if I ran into any difficulties. #### Mom with epilepsy My daughter is now 42 years old and she has two daughters and two grandchildren. I have always been pleased with my decision to go ahead and have my daughter. She means the world to me, is healthy and well, and has been her entire life. I never dropped her and she did not “catch” my [epilepsy](http://livingwellwithepilepsy.com/epilepsy-101). #### Words of wisdom The most important thing for a mother with epilepsy is that she eat well, get plenty of rest and avoid as much stress as she can. My advice is simply: find a good doctor, do what he says, and prepare for the biggest joy of your life. [Share your story ](http://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Family, Mothers Day **Tags:** motherhood, Pregnancy --- ### [Epilepsy and Transportation: How an electric bike saved the day for one mom in Portland](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-and-transportation-how-an-electric-bike-saved-the-day-for-one-mom-in-portland.html) **Published:** January 18, 2018 **Author:** Guest Contributor **Excerpt:** Sara's Story: Getting around without a car (with kids!) If someone had told me a year ago that in 12 months we would be doing most of our daily traveling by electric bike, I would have laughed. I live in Portland, and have a 3-year-old and a 5-year-old. It rains here for about 5 months out of the year. But, it happened. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/01/Mommy-and-Max-1024x683.jpg "Mommy-and-Max – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/mommy-and-max) #### Sara’s Story: Getting around without a car (with kids!) If someone had told me a year ago that in 12 months we would be doing most of our daily traveling by electric bike, I would have laughed. I live in Portland, and have a 3-year-old and a 5-year-old. It rains here for about 5 months out of the year. It gets cold. I’m not in good enough shape to drag two small children around on a bike: one, yes – the Yepp seat that we have attached to my cruiser is fine (although I’ll admit that going uphill is quite a challenge) – but two? I don’t think so. #### Uber and public transportation: thumbs down But, it happened. I crashed my car, and, as I have epilepsy and now cannot drive, we started looking at other ways to get around. Financially, we can’t just take an Uber everywhere. (Also, practically it doesn’t make sense. Put the car seats in the Uber, get the car seats out of the Uber, and then what? Lug them around?) My husband works full time, so I am the one who takes the kids to school and picks them up, takes them to swimming lessons and taekwondo. I have to get to the grocery store, the gym, the hardware store – I have places to go and things to do. Walking everywhere is not an option. And public transportation in Portland? Let’s just say, they are still working on it. #### Electric bike: thumbs up! Then we found it: an electric bike, “eBike” for short. Ebikes are bikes that come with batteries, so you can get places faster, and with less effort than a regular bike. This means that people who otherwise couldn’t ride long distances in a reasonable period of time now can. And, someone figured out that they are not only great for running around town by yourself, but that they can carry things – including people. I bought the pedal-assist [Yuba Spicy Curry](https://www.rei.com/product/128007/yuba-spicy-curry-bosch-electric-bike?CAWELAID=120217890004393480&s_kwcid=PS_Google|401_3662732|REI_DSA|NB|51e3b0e7-ac2e-41b9-a0e5-7e1f4a3dbe09|dsa-192212121845&gclid=EAIaIQobChMIg7nClYTY2AIVwUwNCh2TVATfEAAYASAAEgJhGfD_BwE) with a padded seat attached for my 5-year-old son to sit on, “monkey bars” for him to hold on to, and a [Yepp seat](https://www.rei.com/product/815613/thule-yepp-maxi-rear-bike-child-carrier) for my daughter. Suddenly, what did not seem possible before – carrying the kids all around the city on a bike without being drenched in sweat – was possible. It became my new minivan. #### Learning to ride The learning curve was rather steep. We did not have any biking raingear when we started except for a few ponchos. I don’t know if you have ever ridden on a bike wearing a poncho, but it doesn’t keep you dry. What it does do is billow out behind you like a cape, slowing you down, and hitting the little guy on the padded seat behind you in the face. So, we invested in some biking rain gear for the whole family. The bike also has to be charged, so it is inadvisable to let the battery wear down to the point where you are praying as you ride that it will not die on you because there is a huge hill at the end of this path. After a few times of the bike tipping over, we bought a kickstand that keeps it upright while putting the kids on. (Everyone is fine, by the way.) But, once these kinks were ironed out, my Spicy Curry has been a great car replacement. #### Becoming a one-car family We didn’t become a one-car family on purpose; we had to do it, but with the eBike it has worked. My kids love it. I have already put 500 miles on the bike. That’s 500 miles that I got where I needed to go without driving. 500 miles where I didn’t have to pay for gas, pay for maintenance, pay for a car. Sometimes, when it is pouring outside and 40 degrees, I miss my car. I miss the climate-controlled environment, the heated seats, the protection from the elements. But, then I look at the clock, realize that I have to get the kids to school, stop the pity party (at least for the moment), and march downstairs to bring their raingear up, so we can get back on my bike. Feel free to share your comments below or [submit your own story here](https://livingwellwithepilepsy.com/share-your-epilepsy-experience)! ***\*\* This writer and Living Well With Epilepsy are NOT sponsored to mention these two products, they are just products that work for this writer. Sara, and the Living Well team, simply believe others could benefit from learning about these services.\*\**** ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Family, Life With Epilepsy, Mothers Day **Tags:** ebike, electric bike, transportation --- ### [Epilepsy Blog Relay: Sharing happy moments with a special needs child](https://livingwellwithepilepsy.com/life-with-epilepsy/family/happy-moments-with-special-needs-child.html) **Published:** March 2, 2018 **Author:** Jessica K. Smith **Excerpt:** Jes Armstrong is back again to share an update from her blog Wishes for Mercy, a blog about her experiences as mother to a special needs child who looks normal at first glance. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/10/Screen-Shot-2017-10-26-at-4.37.21-PM-300x300.png "Screen Shot 2017-10-26 at 4.37.21 PM – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-nov-2017-participants/attachment/screen-shot-2017-10-26-at-4-37-21-pm)***This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay) which will run from March 1 to March 31, 2018. Follow along!*** #### Day 2 of the Epilepsy Blog Relay™ Jes Armstrong is [back again](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/nov-17-ebr-posts/jessica-on-wishes-for-mercy.html) to share an update from her blog [Wishes for Mercy](https://wishesformercy.com/), a blog about her experiences as mother to a special needs child who looks normal at first glance. Jes writes, “Though this journey often feels very lonely, I know that is an illusion. So many will relate to what our family experiences. So many suffer much more than we do.” [Wishes for Mercy](https://wishesformercy.com/) shares Jes’ family’s joys, frustrations, happy moments and sorrows with those who care and those who relate. [Read Jes’ Post ](https://wishesformercy.com/) --- **NEXT UP**: Watch for Yarrow’s story on [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). For the full schedule of bloggers participating in the Epilepsy Blog Relay™ visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). **TWITTER CHAT:** And don’t miss your chance to connect with bloggers on the [\#LivingWellChat on April 2 at 7PM ET](https://www.facebook.com/events/205528086692429/). ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Family, Mar 18 EBR Posts, Mothers Day --- ### [Epilepsy Blog Relay™: Faye on Epilepsy and Motherhood](https://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-faye-on-epilepsy-and-motherhood.html) **Published:** March 11, 2017 **Author:** Jessica K. Smith **Excerpt:** Faye writes the blog Epilepsy, Pregnancy, Motherhood and Me which follows the impact of epilepsy and AED's on her pregnancy and motherhood. **Content:** #### [![](http://livingwellwithepilepsy.com/wp-content/uploads/2015/10/fairyfaye-300x300.jpeg "fairyfaye – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/portfolio/nov-9-faye-waddams/attachment/fairyfaye)Day 11 of the Epilepsy Blog Relay™ Faye Waddams is 30 years old and from London. She writes the blog [Epilepsy, Pregnancy, Motherhood and Me](http://fairyfaye1986.weebly.com/). This blog follows the impact of epilepsy and AED’s on her pregnancy and motherhood. #### Faye’s Story I knew there would be lots about becoming a Mum that I didn’t know. I had no idea it was possible to love someone so much it hurt. And I was not aware how the sound of my son’s cry could be the most beautiful thing I had ever heard or equally, that it would be enough to nearly drive me crazy. [Read Faye’s Story ](http://fairyfaye1986.weebly.com/) --- ***[![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/02/epilepsy_dad_epilepsy_blog_relay_picture-150x150.jpg "epilepsy dad – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/portfolio/mar12-david-monnerat/attachment/epilepsy_dad_epilepsy_blog_relay_picture)NEXT UP: Be sure to check out the next post tomorrow by [David Monnerat](http://www.epilepsydad.com/) for more on epilepsy awareness. For the full schedule of bloggers visit*** [***livingwellwithepilepsy.com***](http://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-march-2017-participants)***.*** ***TWITTER CHAT: Don’t miss your chance to connect with bloggers on the [\#LivingWellChat](http://twubs.com/livingwellchat) on March 31 at 7PM ET.*** ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Blog Relay, Mar 17 EBR Posts, Mothers Day, Pregnancy **Tags:** Epilepsy Blog Relay, Mar 17 EBR Posts, Pregnancy --- ### [Mother's Day: A note of thanks to Mum](https://livingwellwithepilepsy.com/epilepsy-stories/note-of-thanks-to-mum.html) **Published:** May 12, 2018 **Author:** Emily Lawrence (Nee Donoghue) **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/05/dear-Mum-2--240x300.jpg "dear Mum 2 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/livingwell/mothers-day/note-of-thanks-to-mum.html/attachment/dear-mum-2)Dear Mum, You were there to hold my hand on my way to the first of many tests for Epilepsy diagnosis. The one who smiled at me with so much love to ease my fears through the old door window as I lay there [all wired up to the EEG](https://livingwellwithepilepsy.com/2015/aboutus-lwwe/emilys-perspective/emilys-perspective-help-child-eeg.html). You laughed with me as we sat waiting for hours on end for appointment after appointment in hospital. You have driven hundreds and hundreds of miles to and from the Hospital over 14 years. You were there to [wipe away my tears](https://livingwellwithepilepsy.com/2014/epilepsy-news/emilys-perspective-finding-good-gets-really-rough.html) as I lay in the emergency department confused and scared after my first Tonic-Clonic seizure. You still hold my hand, you still continue to smile with me, you still wipe away my tears and sit with me on uncomfortable chairs whilst I lay there unconscious, whilst I lay there awake and scared waiting for a hospital bed. Not only are you there for me through these hard, hard times. You are here with me on this terrifying journey, hoping to get things under control as much as I hope. You have sleepless nights when you know how unwell I have been, yet you still smile. You’re also on this amazing journey with me through the good times. You have attended awards with me-cried happy tears with me when I have achieved all I have dreamed of. You’ve taken part in charity runs when you HATE running. > Thank you Mum, for being my biggest fan. I am forever grateful for you. You really are my biggest supporter in my life, and it means the world to me. Thank you for being a wonderful role model. You are such a strong, kind, independent and caring woman and an even more amazing Mum. If I am even half as amazing of a woman as you are, I will be satisfied. Thank you for setting a wonderful example for me to follow throughout the years. Thank you for providing the best advice. Your words of wisdom are so insightful. I know I’ve left home now, but I love our silly conversations and heart to hearts more than before because of this. I was only 10, a little girl, when my journey started, and 14 years later you still remain so strong and your strength gives me strength. Your smile makes me smile. Your laugh is infectious. Your heart is so pure and true. Above all [I love that you are my Mother](https://livingwellwithepilepsy.com/2018/livingwell/mothers-day/special-thanks-for-mothers-day.html). Not only my Mum, but forever my Friend. So Dear Mum-thank you. ![author avatar](https://secure.gravatar.com/avatar/5523d28ae8bbaedc9d082d51d29393ca490379cd31464b99ab3c7d50a49362ac?s=300&d=mm&r=g) Emily Lawrence (Nee Donoghue) 25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England. Emily's Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10. Based in UK. [See Full Bio](https://livingwellwithepilepsy.com/author/emilyd) [ ](https://livingwellwithepilepsy.com/author/emilyd) **Categories:** Emily's Perspective, Epilepsy Stories, Mothers Day --- ### [Epilepsy Blog Relay: Maureen's experience taking the SATs](https://livingwellwithepilepsy.com/epilepsy-blog-relay/mar-18-ebr-posts/epilepsy-blog-relay-maureens-experience-taking-sats.html) **Published:** March 9, 2018 **Author:** Maureen Knorr **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/11/2017-06-26-15.59.15-2-e1511032407985-300x211.jpg "2017-06-26 15.59.15 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/maureen-on-exploring-hawaii-with-epilepsy.html/attachment/2017-06-26-15-59-15-3)March 8***This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay) which will run from March 1 to March 31, 2018. Follow along!*** Over one million students take the SAT each year. This is my story of the SATs with epilepsy. Every American teenager dreads the SATs. We learn the test format, memorize test makers tricks, and even review previous years questions. Despite preparing months in advanced, I never felt 100% ready and thoughts of the test day sent adrenaline pumping through my veins. Some say that your future depends on this test as it ranks us against our peers determining university choices. Scholarships are given to those that do exceptionally well and 4 years later this will make a difference in our career options. Teachers drilled these messages into our heads, SAT study groups parroted the importance, and my peers had already determined what score they needed to attend their university of choice. It’s fair to say I was nervous to take the SATs! There is a ‘before the test’ regime that we all learn: be well rested, eat a healthy breakfast, don’t inhale copious amounts of coffee, etc. I followed this advice meticulously. Arriving early to my testing center at East High School on University Ave. and checking in with hundreds of other grim, zombie teens also following this advice. I was miserable for the forced punctuality on my Saturday morning and unfortunately at the time I had no idea that stress, fear, and fatigue were dangerous seizure triggers. It started while I was walking up the marble staircase to the second floor. I could feel myself slipping out of consciences and beginning to fall but I flashed back to reality fast and attempted to catch myself. But before I could regain power to catch my fall, everything was black again. Dark to light to dark again, like a strobe light. My fall felt like an eternity, like slow motion, and the world around me seemed to be paused. Finally, my chin hit the floor and I was back in reality out of my time warp. My TI82 Calculator went flying down the hall. A girl retrieved my bulky (hopefully not broken) calculator and placed her hand on my back as I got to my feet. “Are you ok?” She asked with concerned eyes. “Yeah, I’m fine. Thanks.” I blushed and lumbered down the hall to find my room. “How embarrassing,” I thought as I ducked into my room rubbing my scratched chin. I placed my three #2 pencils, two erasers, and my TI82 calculator neatly on my desk. The proctor was a young teacher that looked almost as melancholy as the exam takers. She closed the door and began to read the instructions in a monotone, nasal voice. I watched her pace back and forth and that’s the moment that I felt myself slipping back into slow motion. “Not again…” I thought. A humiliating fall to the floor flashed through my mind. But this time was different. I didn’t flash back into conscious. My head fell back and I slipped right out of my desk onto the floor and started convulsing uncontrollably. And I assume 30 students watched paralyzed as I lashed back and forth. I imagine some thought, “Is this a joke? Will she get in trouble?” And others thought, “how do I help her?” Unprepared students probably felt relieved thinking; “hopefully this gets me out of the SATs today!” I don’t know if they took the test that day. I woke up in the hospital over 24 hours later unaware that I had attempted to take the SATs, unaware of where I was, and unable to answer what year it was. It makes me ponder all the terrible possibilities of how that day ended for me. It’s possible I stood up and ran out of the room in a postictal psychosis state (psychosis after a seizure.) My behavior could have reflected a person with severe schizophrenia. I could have been wandering around the city for hours unaware of who I was or what was happening. Or, what I hope happened, is that the proctor called 911 and did her best to make sure I didn’t hit injure myself. But, I have no idea. That time has been lost and deleted from my memory. Which may be for the best! I also share this story to encourage those with epilepsy to speak up and ask for test taking modifications. Something as simple as having the test in the afternoon could help thousands of students. I also share this story to encourage people to learn and teach seizure first-aid. I want to emphasize the confusion, humiliation and time loss seizures can cause. Seizure first-aid should be something everyone is familiar, after all 1 in 10 persons will have a seizure in their lifetime. What would you do if a peer had a seizure during class or a meeting? --- **NEXT UP:** Be sure to check out the next post tomorrow by Rachel at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com). For the full schedule of bloggers visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com). **TWITTER CHAT:** And don’t miss your chance to connect with bloggers on the #LivingWellChat on April 2 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/21dd1cb76084b50fb7cccc4f2b6135cd43d1c082e5b039d6d4a99606803dc749?s=300&d=mm&r=g) Maureen Knorr I’m Maureen, and I have epilepsy. You’re probably reading this because either you have epilepsy, or you love someone that has epilepsy. Whatever sparked your curiosity, I am happy to be sharing my experiences with you. From having seizures in foreign countries to begging pharmacists that don’t speak English for medication, I can definitely say that it's been an interesting journey. Hopefully reading about my ups and downs, and my everyday and not so everyday adventures will inspire you too! Welcome to my life of living well with epilepsy! [See Full Bio](https://livingwellwithepilepsy.com/author/maureen-knorr) [ ](https://livingwellwithepilepsy.com/author/maureen-knorr) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://maureenknorr) **Categories:** Mar 18 EBR Posts --- ### [Epilepsy Blog Relay: Rachel on epilepsy technology](https://livingwellwithepilepsy.com/epilepsy-blog-relay/mar-18-ebr-posts/rachel-on-epilepsy-tech.html) **Published:** March 9, 2018 **Author:** Rachel Ehrhardt **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/01/IMG_7651-e1515263953188-1024x493.jpg "IMG_7651 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2018/aboutepilepsy/seizure-triggers/seizure-triggers-guide-resolutions.html/attachment/img_7651)March 9 ***This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay) which will run from March 1 to March 31, 2018. Follow along!*** The theme for this week’s blog relay is all about different types of technology that involved in epilepsy. This technology has a personal connection to me actually; my sister Meredith had a VNS, Vagal Nerve Stimulator implanted last year. #### RNS The first type of technology is the RNS that I researched. According the Center for Disease Control, the device is created by NeuroPace for seizure disorder patients over the age of eighteen. While this is not the first implant of its kind created for patients in this situation; this device is the first that can respond to brain activity directly on its own. According to the manufacturer, the device is looking for unusual brainwaves, also it is taught to detect what is unusual for you and then, the device within a millisecond will end the seizure activity. #### EEG During my blog last year throughout March’s relay I discussed an EEG, electroencephalography and it’s usage in testing for abnormalities. This year, I found something really cool as a follow up. According to an article by MIT, Engineers at The Imperial College of London are now testing an inner ear EEG system that would be worn like a hearing aid. The original intent of the device was for multiple different situations. The first of which was for infants that struggle keeping the electrodes on their heads. The second situation was for when an EEG is need for multiple days a time where the patient cannot be in the hospital setting. Both situations make the results more reliable for the patient #### Pulse Guard Lastly, is a product that I’ve been interested in lately. It’s called the Pulse Guard. The product was created because a mother was concerned about her son at night that had seizures at night. The product was created to monitor the pulse rate of a patient during the night. The product includes a wrist or ankle band that communicates by Bluetooth on an Apple IPad product. The product is known for not disturbing the person’s sleep pattern. If the patient’s pulse rate drops or increases at all the iPad will raise an alert immediately. This is something that I am very interested in personally due to the fact that my neurologist has suspected that I have had issues in my sleep in the past. You can purchase the product on the company’s website directly. --- **NEXT UP:** Be sure to check out the next post tomorrow by Emma at [littlemamamurphy.co.uk](http://Www.littlemamamurphy.co.uk). For the full schedule of bloggers visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com). **TWITTER CHAT:** And don’t miss your chance to connect with bloggers on the #LivingWellChat on April 2 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/82d406d4460971f22d36968d14d1294a2a0c55c719c5b66a09acb2d2ad3872f2?s=300&d=mm&r=g) Rachel Ehrhardt Rachel Ehrhardt Streelman is from Houston , Texas. She has been a writer and contributor to Living Well with Epilepsy for two years. Rachel has had epilepsy since 9 months old. She comes from a family where her father, sister, and herself all have different forms of epilepsy. Rachel is married to Casey and they have a Cavapoo named Sheldon. [See Full Bio](https://livingwellwithepilepsy.com/author/rachel) [ ](https://livingwellwithepilepsy.com/author/rachel) **Categories:** Mar 18 EBR Posts --- ### [Researchers discover common genetics in autism and epilepsy](https://livingwellwithepilepsy.com/epilepsy-news-and-research/researchers-discover-common-genetics-in.html) **Published:** April 8, 2011 **Author:** Jessica K. Smith **Content:** [![](http://livingwellwithepilepsy.com/wp-content/uploads/blogger/-8mVCZ-RCPmw/TZ8uRcMQKlI/AAAAAAAAARM/3_k0pSXaWws/s200/9_cover.gif)](http://livingwellwithepilepsy.com/wp-content/uploads/blogger/-8mVCZ-RCPmw/TZ8uRcMQKlI/AAAAAAAAARM/3_k0pSXaWws/s1600/9_cover.gif) Below is a story that was originally produced for the [Journal of Human Molecular Genetics (May 2011)](http://hmg.oxfordjournals.org/content/early/2011/03/25/hmg.ddr122.abstract?sid=397c50a7-4df5-48ca-a7bf-624115b685c3). The research is so groundbreaking that the story has already been picked up by [Science Daily](http://www.sciencedaily.com/releases/2011/04/110408075031.htm), The [Toronto Sun](http://www.torontosun.com/life/healthandfitness/2011/04/08/17919546.html), [The Ottowa Sun](http://www.ottawasun.com/life/healthandfitness/2011/04/08/17919616.html), [A Health Blog](http://www.ahealthblog.com/researchers-identify-common-genetic-cause-of-autism-and-epilepsy.html), [BioQuick News](http://www.bioquicknews.com/node/455?utm_source=twitterfeed&utm_medium=twitter), [PhysOrg](http://www.physorg.com/news/2011-04-world-discovery-common-genetic-autism.html) and is spreading across the globe swiftly. **What’s the story?** Led by the neurologist Dr. Patrick Cossette, the research team at Département de Médecine, Université de Montréal, CHUM-Hôpital Notre-Dame found a severe mutation of the synapsin gene (SYN1) in each member of a large French-Canadian family suffering from epilepsy, including individuals also suffering from autism. This study also included an analysis of two cohorts of individuals from Quebec, which made it possible to identify other mutations in the SYN1 gene among 1% and 3.5% of those suffering respectively from autism and epilepsy, while several carriers of the SYN1 mutation displayed symptoms of both disorders. “The results show for the first time the role of the SYN1 gene in autism, in addition to epilepsy, and strengthen the hypothesis that a deregulation of the function of synapse because of this mutation is the cause of both diseases,” notes Cossette. He adds that “until now, no other genetic study of humans has made this demonstration.” **The Whole Deal** To read the full study go to the source at the [Journal of Human Molecular Genetics](http://hmg.oxfordjournals.org/content/early/2011/03/25/hmg.ddr122.abstract?sid=397c50a7-4df5-48ca-a7bf-624115b685c3). I can’t wait to hear your thoughts on this story. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Autism and Epilepsy, News and Research --- ### [World Autism Day: Perspective Is Everything](https://livingwellwithepilepsy.com/epilepsy-stories/world-autism-day-perspective-is-everything.html) **Published:** April 2, 2018 **Author:** Guest Contributor **Excerpt:** In the early days I sometimes came across the statistic that up to one third of individuals with autism will also eventually be diagnosed with epilepsy. I never dismissed it, but I never dwelled on it, either - until it became a reality for us. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/03/AE13F225-5B00-456A-ADE9-9D103990FB0B-e1522672494804-300x300.jpeg "AE13F225-5B00-456A-ADE9-9D103990FB0B – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/ae13f225-5b00-456a-ade9-9d103990fb0b)Alex’s Story Our son, Alex, was diagnosed with [autism](https://livingwellwithepilepsy.com/2011/epilepsy-news/researchers-discover-common-genetics-in.html) in 1998. Before he acquired language, he made noises all day, every day. When he started to speak around the age of three, a lot of it was echolalia – repetition of things we had read to him or he had heard on a video. These days, Alex’s vocabulary is professorial, his language spontaneous and entertaining. He also still scripts a lot. However, this is now a great source of comfort since he was diagnosed with [epilepsy](https://livingwellwithepilepsy.com/epilepsy) three and a half years ago, because I know that if I hear him talking, he’s not having a seizure. #### Epilepsy and Autism In 1998, I knew nothing about autism so I started reading. In twenty years I’ve studied a LOT. Occasionally, I came across the statistic that up to one third of individuals with autism will also eventually be diagnosed with epilepsy. I never dismissed it, but I never dwelled on it, either. Our child has also had to deal with overwhelming anxiety and Tourette Syndrome, so in my mom mind, there was just no way he would be saddled with anything else. But, in 2014 out of nowhere, epilepsy barged into his life. It was loud. It was bloody. It was horrifying. Alex had been doing so great. He’d graduated from high school the year before, was a volunteer at our local library and his high school library, and cleaned at his dad’s office three days a week. #### The first seizure That morning, the next to last day of July, was a low key one with plans to go to a local fair in the afternoon. Alex was hanging out in his room. I was upstairs on the phone with my son, Patrick, while looking for customer information on his laptop, and just steps away from Alex’s room. I heard a crash and Legos falling to the floor. I really thought he had simply dropped one of his new Lego projects. But, when I called his name, he didn’t answer. I rushed in and found him unconscious, seizing on the floor. There was blood everywhere from a gash on his head. I just started screaming and told Patrick to hang up. I only knew that I needed to call 9-1-1 and could not even relay to poor Patrick what was going on. I will regret that forever because he must have been so frightened for his little brother, not knowing what the heck was happening. I’ve calmed down a lot since that day when faced with a seizure. #### The diagnosis The week following Alex’s [tonic-clonic seizure](https://livingwellwithepilepsy.com/2013/personal-epilepsy-stories/tonic-clonic-seizures.html) was filled with many tests. We were then referred to a neurologist at a major medical center far from our home. Two weeks later in her office, she gave us the news that he had epilepsy, as the EEG had shown irritability on the right side of his brain. #### Everyday life with Epilepsy I HATED that he tried so hard at everything he did, but now had to deal with yet another hurdle. However, we WERE glad to have an answer and medication that the doctor was confident would keep him seizure free. Except for the initial adjustment period, Alex did well on it for two years. Because of some of the other limitations Alex faces in his life due to his autism, controlling his epilepsy is a family effort. While he is very articulate and certainly knows how he feels, it is up to us to make sure he gets enough sleep, help him manage his days to lessen his anxiety, and keep him safe. #### More changes in search of control In February of 2017, however, he had another seizure. Another followed in June, and then two more, each one month apart. It was a difficult summer for our guy who loves to swim and bike, because when you have a seizure those activities are put on hold for safety. We were finally able to reach a therapeutic level with Alex’s medicines and he has now been seizure free since August 2017, but I still worry daily. I recently asked him if the possibility of having one worried him. He matter-of-factly replied, “Well, no, because I know now that when I get that ‘heavy head’ or ‘abnormal dizziness’ feeling, I should lie down on the floor in a fetal position and I’ll be okay.” #### Talking about it With his last seizure, he knew it was coming on and got himself to the couch. The next day, we discussed an even safer option of immediately lying on the floor on his side next time. It wasn’t until this year that we felt comfortable talking about his epilepsy. We came to realize that just like educating others about autism has helped people better understand Alex, providing as much information about epilepsy and what his seizures look like can only help keep him safer if others aren’t afraid to help. --- [Share your own Autism and Epilepsy story](https://livingwellwithepilepsy.com/share-your-epilepsy-experience) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Autism and Epilepsy, Epilepsy Stories **Tags:** autism, tonic clonic --- ### [Don’t miss another #LivingWellChat on April 2 at 7pm ET](https://livingwellwithepilepsy.com/epilepsy-blog-relay/mar-18-ebr-posts/livingwellchat-april18.html) **Published:** April 1, 2018 **Author:** Jessica K. Smith **Excerpt:** At the end of every Epilepsy Blog Relay, we close with a live #LivingWellChat. Join us on April 2, at 7pm ET/6pm CT/5pm MT/4pm PT to celebrate and connect with some of our fantastic bloggers. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2016/10/LWC1-300x251.png "lwc1 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/portfolio/nov30-16-3/attachment/lwc1)At the end of every *[Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay),* we close with a live #LivingWellChat. Join us on April 2, at 7pm ET/6pm CT/5pm MT/4pm PT to celebrate and connect with some of our fantastic bloggers. The chat lasts about 1 hour. Just use the hashtag #LivingWellChat to filter out all the other social noise on twitter and join the conversation! #### How does the chat work? Lots of Twitter chats have a formal structure, only allowing a few minutes per question, but #LivingWellChat is more open. You will find #LivingWellChat is very simple: We start with a general topic, and the conversation flows from there. We encourage spontaneous discussion with tons of Q&A. #### This Month’s Topic*: Epilepsy in real life* Throughout the chat we will touch on the following: Q1: Introductions Q2: What does [Epilepsy](https://livingwellwithepilepsy.com/epilepsy) in real life look like to you? Q3: Do you think the reality is different from what other people assume or expect of someone living with epilepsy? Q3: How does memory loss affect your social and work life? Q4: How does fatigue affect your daily activities? Q5: Does epilepsy impact decisions you make? In what way? Q6: What would you like people to know about living with epilepsy? #### Participating in the next #LivingWellChat 1\. Go to OR 2\. Be sure to **log in** using your twitter account \*\*IMPORTANT\*\* 3\. Set the chat speed as fast or slow as you prefer 4\. The Twitter feed will pop up with all the #LivingWellChat tweets. 5\. Be sure to introduce yourself when you come on the chat 6\. Join the conversation I really like Twubs, but some people prefer Tweetchat. Others prefer to participate within Twitter. It’s up to you! #### **Follow along even if you don’t have a twitter account** You won’t be able to chime in with your own comments but here are two ways to follow along: Option 1: Go to the Living Well With Epilepsy Facebook page and click on the [Twitter tab](https://www.facebook.com/livingwellwithepilepsy/app/294627540601598/). Option 2: Go to and watch the chat in the footer of the home page. #### Can anyone join in the conversation? Join in the conversation! Whether you have been living with epilepsy for decades, or if you are newly diagnosed, you and your loved ones will find something of interest on the next #LivingWellChat. #### Click below to participate [\#livingwellchat](http://twubs.com/livingwellchat) --- **NEXT UP:** In April we will cover Autism and [Epilepsy](https://livingwellwithepilepsy.com/epilepsy) in honor of Autism Awareness Month.[ Feel free to share your story](https://livingwellwithepilepsy.com/share-your-epilepsy-experience). We will also provide updates from epilepsy around the world. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Mar 18 EBR Posts **Tags:** #LivingWellChat --- ### [Epilepsy Blog Relay: On sharing a love of creativity](https://livingwellwithepilepsy.com/life-with-epilepsy/family/on-sharing-a-love-of-creativity.html) **Published:** March 30, 2018 **Author:** Guest Contributor **Excerpt:** A passion for creativity was something I hoped to pass on to Colleen. From a child to adult, I have always had a love for drawing, music, paint…anything in which I could create something of my own. **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/10/image3-225x300.jpeg "image3 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-nov-2017-participants/attachment/image3-3)This post is part of the Epilepsy Blog Relay™ which will run from March 1 to March 31, 2018. Follow along!*** Jennifer writes [Building Castles](https://timetobuildcastles.wordpress.com/) where she shares her family’s experiences with epilepsy. Jennifer writes, “we all have hopes and dreams, and mine changed dramatically when Colleen was born. There has been an incredible amount of uncertainly of just what Colleen will be able to do, and questions on her progress is met with ‘we’ll just have to wait and see’.” Below you will find an excerpt of Jennifer’s story. #### Excerpt A passion for creativity was something I hoped to pass on to Colleen. From a child to adult, I have always had a love for drawing, music, paint…anything in which I could create something of my own. As Colleen has gone through school, her works of art decorate our home’s walls. Whenever music plays, she’s dancing, and even when it’s not playing, I want to ask her what music she has in her head as a smile alights her face as she bops back and forth. [Read more](https://timetobuildcastles.wordpress.com/2018/03/30/creativity-epilepsy/) --- NEXT UP: Be sure to check out the next with instructions on how to participate in the #livingwellchat at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com). TWITTER CHAT: And don’t miss your chance to connect with bloggers on the [\#LivingWellChat](http://twubs.com/livingwellchat) on April 2 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Family, Mar 18 EBR Posts --- ### [Epilepsy Blog Relay: Susanna writes about how epilepsy has made her more creative](https://livingwellwithepilepsy.com/epilepsy-blog-relay/mar-18-ebr-posts/epilepsy-blog-relay-susanna-writes-about-how-epilepsy-has-made-her-more-creative.html) **Published:** March 27, 2018 **Author:** Jessica K. Smith **Excerpt:** Being diagnosed with epilepsy at the age of three means it has always been a significant part of who I am. A lot of people tell you ‘don’t let your condition define who you are’ but you can’t stop it from doing so. The simple fact is, as human beings, the experiences we have alter the way we develop. And I believe epilepsy has, in more ways than one, driven me to be the creative person I am today. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/03/20139709_10213881712333856_6667810095498449908_n.jpg "20139709_10213881712333856_6667810095498449908_n – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/home/attachment/20139709_10213881712333856_6667810095498449908_n)***This post is part of the Epilepsy Blog Relay™ which will run from March 1 to March 31, 2018. Follow along!*** Susanna writes skfantoni.com where she shares here experiences living with epilepsy. At the age of 3, Susanna was diagnosed with Epilepsy. She suffers from what is now described as Focal Impaired Awareness Motor Seizures. Then at the age of 15, she was diagnosed with High Functioning Autism, frequently referred to as Asperger Syndrome. Before she received this second diagnosis, however, Susanna went through 6 years of constant bullying. Below you will find an excerpt from her story. #### Excerpt Being diagnosed with epilepsy at the age of three means it has always been a significant part of who I am. A lot of people tell you ‘don’t let your condition define who you are’ but you can’t stop it from doing so. The simple fact is, as human beings, the experiences we have alter the way we develop. And I believe epilepsy has, in more ways than one, driven me to be the creative person I am today. --- NEXT UP: Be sure to check out the next post by Leila at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com). For the full schedule of bloggers visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com). TWITTER CHAT: And don’t miss your chance to connect with bloggers on the #LivingWellChat on April 2 at 7PM ET. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Autism and Epilepsy, Mar 18 EBR Posts --- ### [Epilepsy Blog Relay: Drake raises his voice for epilepsy research](https://livingwellwithepilepsy.com/epilepsy-blog-relay/mar-18-ebr-posts/epilepsy-blog-relay-drake-raises-his-voice-for-epilepsy-research.html) **Published:** March 26, 2018 **Author:** Guest Contributor **Excerpt:** Drake Abramson was thirteen when he was diagnosed with epilepsy. Ever since, he has made it his mission and his passion to bring about substantive change in the world for people with epilepsy. For instance, he created his own nonprofit, ThinkBrave, to fund scholarships for students with health challenges within his community. **Content:** *[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/03/Drake-Abramson-Photo.jpg "Drake Abramson Photo – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/home/attachment/drake-abramson-photo)**This post is part of the Epilepsy Blog Relay™ which will run from March 1 to March 31, 2018. Follow along!*** *Drake Abramson was thirteen when he was diagnosed with epilepsy. Ever since, he has made it his mission and his passion to bring about substantive change in the world for people with epilepsy. For instance, he created his own nonprofit,* [ThinkBrave](http://www.thinkbrave.org/)*, to fund scholarships for students with health challenges within his community.* #### Drake’s Story In 2011, I had my first seizure. After a period of being withdrawn and depressed about my diagnosis, I began speaking out about my epilepsy. Through my efforts to speak out and raise awareness, I met with many legislators on the state and federal level. I also met many people who need a voice to speak up for them. More importantly, they need a CURE! While raising awareness is important and I will continue to speak out to help improve the quality of life for those living with epilepsy, I have also seen the need for research to help find what causes seizures and how to stop them. That would truly improve the quality of life for so many! I am a recent recipient of an [Education Enrichment Fund scholarship](https://www.cureepilepsy.org/about-epilepsy/epilepsy-resources/scholarship) from CURE and Lundbeck. This[ scholarship](https://www.cureepilepsy.org/about-epilepsy/epilepsy-resources/scholarship) has had a huge impact on my ability to do the extra things in college such as study abroad. I am majoring in Political Science with a minor in International Relations. Thanks to this scholarship I will have the chance to study in Ireland next year for a semester. I plan on studying in a few other countries as well over the course of my four years. This is a very special opportunity that I feel very privileged to be able to take advantage of. Ideally, I would love to help [CURE](https://www.cureepilepsy.org) on the legislative level. But for now I would like to work with CURE on two specific projects and anything they would like to include me in. The first is following a trend that many communities have engaged in. The “rocks.” You paint a rock and hide it in your community for someone else to find. I would like to do this on my college campus but with a twist. I want to do Research Rocks that have a fact or statistic about epilepsy and seizures on them. This will help raise awareness and educate anyone who finds one. On the back of each Research Rock would be the CURE website address for them to learn more. Second, is a project that would involve getting college students with epilepsy to join in and visit our Indiana State House to talk with legislators about how they can impact the needs of the epilepsy community. *The March 2018 Epilepsy Blog Relay™ was sponsored by* [*Lundbeck*](http://www.lundbeck.com/us) *– a global pharmaceutical company committed to improving the quality of life for those living with brain disorders, including epilepsy. Lundbeck connects people living with challenging seizures at* [*www.LGSTogether.com*](http://www.lgstogether.com/) and through the* [*LGS Together Facebook page*](http://www.facebook.com/LGSTogether)*.* *The Citizens United for Research in Epilepsy (CURE) and Lundbeck* [*Education Enrichment Fund (EEF) Scholarship*](https://www.cureepilepsy.org/about-epilepsy/epilepsy-resources/scholarship) *is a one-time scholarship (up to $5,000) to cover tuition, books, and course materials for those living with epilepsy, or for family members and caregivers of those impacted by the disease. The scholarship is to be used toward coursework advancing personal knowledge in research, health education, advocacy and/or awareness in relation to the recipient’s experiences with epilepsy. Learn more about applying for the 2018 scholarship:* [*http://bit.ly/2nSV6ac*](http://bit.ly/2nSV6ac)*.* --- NEXT UP: Be sure to check out the next post by Susanna at [www.skfantoni.com](http://www.skfantoni.com). For the full schedule of bloggers visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com). TWITTER CHAT: And don’t miss your chance to connect with bloggers on the #LivingWellChat on April 2 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Mar 18 EBR Posts --- ### [Epilepsy Blog Relay: The race against time](https://livingwellwithepilepsy.com/epilepsy-blog-relay/mar-18-ebr-posts/epilepsy-blog-relay-the-race-against-time.html) **Published:** March 22, 2018 **Author:** Guest Contributor **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/03/Maternity-80-200x300.jpg "Maternity-80 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/maternity-80)***This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay) which will run from March 1 to March 31, 2018. Follow along!*** Before you become a parent, you are continuously told “it goes by so fast”, “cherish every moment”, “Before you know it, your children will be out of the house”, and so many other phrases that insinuate life is about to move a whole lot quicker. You smile and nod at everyone who tells you these phrases and you might even think you understand what this means, but then your child is born, and you realize, you had no idea. From the minute your first child is born you are instantly placed into a lifelong game of tug and war, wishing time would speed up yet begging for it to slow down. Then if you are one of the chosen parents who are gifted a child with epilepsy, all the above takes on a whole new meaning. #### Sonya’s Story www.sonyasstory.com is a blog written by a mom as she sails through life with 5 children. Her 4th child, Sonya, has a rare genetic disorder, CDKL5, that causes intractable epilepsy, cortical vision impairment, gastrointestinal difficulties, profound developmental delays, and many other deficits. The blog was established shortly after Sonya’s diagnosis in 2015 when she was 2 months old. In 2016, Sonya’s Story was turned into a non-profit organization in hopes to raise awareness and critical funds for CDKL5 and Epilepsy research. --- **NEXT UP:** Be sure to check out the next post tomorrow by Emily at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). For the full schedule of bloggers visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). **TWITTER CHAT:** And don’t miss your chance to connect with bloggers on the [\#LivingWellChat](https://www.facebook.com/events/205528086692429/) on April 2 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Mar 18 EBR Posts --- ### [Epilepsy Blog Relay: Epilepsy through the generations](https://livingwellwithepilepsy.com/epilepsy-blog-relay/mar-18-ebr-posts/epilepsy-through-the-generations.html) **Published:** March 20, 2018 **Author:** Guest Contributor **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/02/Us-300x225.jpg "Us – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/us)This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay) which will run from March 1 to March 31, 2018. Follow along!*** Desiree writes, [Brain Blips: An Epilepsy Journey](https://brainblipjourney.blogspot.com/2018/03/epilepsy-from-generation-to-generation_19.html), where she writes about their family and having a child with epilepsy. #### Excerpt from post At some point, after I met and married my husband, I learned that his father (whom we’ll call Paul), a successful chemical engineer, had epilepsy. Back then I knew very little about epilepsy. And sadly, the little bit I thought I knew–which came by word of mouth and from TV–was mostly wrong. I wish I could say that having a relative with epilepsy caused me to become more informed, but it didn’t. Acknowledging epilepsy’s presence in our extended family, let alone discussing it, I soon learned, was unwelcome. Talking about epilepsy was perceived as uncomfortable in an unkind way. The message was clear: epilepsy was a private health concern best kept private. Because my father-in-law Paul’s epilepsy was very well controlled for most of his adult life, it was easy to forget that it was there. The code of privacy, secrecy, and silence surrounding seizures was very strong. On the rare occasions that Paul had break-through seizures (twice in two decades), the information that came through to us was minimal. It was enough to know that Paul had had a seizure; we didn’t need to know more, except as it might impact plans that included us. Read more at [Brain Blips: An Epilepsy Journey](https://brainblipjourney.blogspot.com/2018/03/epilepsy-from-generation-to-generation_19.html) --- **NEXT UP:** Be sure to check out the next post tomorrow at [theworldofgorgeousgrace.com](http://theworldofgorgeousgrace.com). For the full schedule of bloggers visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). **TWITTER CHAT:** And don’t miss your chance to connect with bloggers on the [\#LivingWellChat](https://www.facebook.com/events/205528086692429/) on April 2 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Mar 18 EBR Posts --- ### [Epilepsy Blog Relay: Things to know about life as an Lennox-Gastaut Syndrome family](https://livingwellwithepilepsy.com/life-with-epilepsy/family/things-to-know-about-lennox-gastaut-syndrome.html) **Published:** March 19, 2018 **Author:** Guest Contributor **Content:** ***This post was written by Darla Davison, mom to Aaron who has Lennox-Gastaut Syndrome (LGS), a rare and severe type of epilepsy. Living Well With Epilepsy is grateful to Lundbeck, [Champion Sponsor](https://livingwellwithepilepsy.com/epilepsy-blog-relay/march-2018-sponsors-and-partners) of the [March 2018 Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay).*** Thrilling, Inspiring, Better together **[![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/03/DarlaDavison_Photo1-1024x576.jpg "DarlaDavison_Photo1 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/home/attachment/darladavison_photo1)** *“This photo was taken just a day or two after the 2016* [LGS conference](http://www.lgsfoundation.org/conference) *in Denver. We were already on a high from seeing all of our LGS friends, and then we were blessed to see some gorgeous sights.”* #### Things to know - Families affected by Lennox-Gastaut syndrome (LGS) are “normal” families. No one expects or deserves something like this to happen to anyone in their family. - LGS individuals and families will need a lot of support and understanding as they navigate through the ups and downs of daily life. There will be times when plans need to be changed or rescheduled, often at the last minute. Any progress in an LGS child’s development or improvement in their condition brings much celebration and gratitude. However, setbacks often come, bringing disappointment and discouragement. - Individuals with LGS are generally happy and content with their lives. They love their families, friends, and community. They love to laugh and be given your full attention. They don’t feel different from anyone else and enjoy being treated the same. - You are blessed if you know someone with LGS. You are privileged to meet someone who is likely stronger and more resilient than you are. We can learn much from individuals and families who experience life with a great amount of difficulty and suffering. They tend to appreciate the simpler things in life and cherish each day with their loved ones. - The top strengths of the LGS community: The commitment to fight and advocate for everyone’s loved ones Resilience to extreme ups and downs Supportiveness and the instant connection with other LGS families *The March 2018 Epilepsy Blog Relay™ was sponsored by* [Lundbeck](http://www.lundbeck.com/us) *– a global pharmaceutical company committed to improving the quality of life for those living with brain disorders, including epilepsy. Lundbeck connects people living with challenging seizures at* [www.LGSTogether.com](http://www.lgstogether.com/) and through the LGS Together Facebook page (*[www.facebook.com/LGSTogether](http://www.facebook.com/LGSTogether)*).* --- **NEXT UP:** Be sure to check out the next post tomorrow by Desiree at For the full schedule of bloggers visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). **TWITTER CHAT:** And don’t miss your chance to connect with bloggers on the [\#LivingWellChat](https://www.facebook.com/events/205528086692429/) on April 2 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Family, Mar 18 EBR Posts **Tags:** LGS --- ### [Epilepsy Blog Relay: Joe on living with uncontrolled seizures](https://livingwellwithepilepsy.com/epilepsy-blog-relay/mar-18-ebr-posts/epilepsy-blog-relay-joe-on-living-with-uncontrolled-seizures.html) **Published:** March 15, 2018 **Author:** Jessica K. Smith **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/02/P4171564-A-Low-Res-3.jpg "OLYMPUS DIGITAL CAMERA – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/home/attachment/olympus-digital-camera-2)March 13***This post is part of the Epilepsy Blog Relay™ which will run from March 1 to March 31, 2018. Follow along!*** #### Joe’s Story Joe’s blog, [The Epileptic Man](https://epilepticman.com/about/), aims to start showing those who lack epilepsy awareness who we are, what we manage, and why we need them to start offering a little more support. ##### Excerpt “Although I’m still hoping to recall what happened in February, right now I feel I should be honest and tell you how I’m just struggling to communicate at the moment. As of late, I’ve been feeling very drowsy, and have had to deal with what feels like a real lack of concentration. ” [Check out Joe’s Post ](https://epilepticman.com/2018/03/06/number-49-uncomfortable-update/) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Mar 18 EBR Posts --- ### [Epilepsy Blog Relay: Diminishing the Burden](https://livingwellwithepilepsy.com/epilepsy-blog-relay/mar-18-ebr-posts/epilepsy-blog-relay-diminishing-the-burden.html) **Published:** March 24, 2018 **Author:** Guest Contributor **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/02/20170919_223801000_iOS-240x300.jpg "20170919_223801000_iOS – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/20170919_223801000_ios)***This post is part of the Epilepsy Blog Relay™ which will run from March 1 to March 31, 2018. Follow along!*** #### Jade’s Story I was diagnosed with Epilepsy 30 years ago at the age of eight. The word burden was not part of my vocabulary all those years ago when this journey with Epilepsy began. Yet by the time I entered my twenties burden was all I felt. This was never a feeling my family put upon me and nothing I felt as a child. As I grew up and learned firsthand about medication costs, insurance struggles and personal sacrifice. I could see what my family had to deal with. With age brought a different understand of my diagnosis and it shifted everything for me. I had always been determined to be independent and self-sufficient but I felt even more so with age. [Read Jade’s Post](http://www.jadenelson.net) --- NEXT UP: Be sure to check out the next post by Allison at . For the full schedule of bloggers visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com). TWITTER CHAT: And don’t miss your chance to connect with bloggers on the #LivingWellChat on April 2 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Mar 18 EBR Posts --- ### [Epilepsy Blog Relay: What it really feels like to have epilepsy](https://livingwellwithepilepsy.com/epilepsy-stories/epilepsy-blog-relay-what-it-really-feels-like-to-have-epilepsy.html) **Published:** March 15, 2018 **Author:** Guest Contributor **Excerpt:** I find myself trying to make the best of my hell-a-coaster days because it takes almost everything in me to function at full potential these days. It's like my mind and body are working on two different universes and working against each other. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/03/1521037001933-486034413-1-e1521077775893-267x300.jpg "1521037001933-486034413-1 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/1521037001933-486034413-1)***This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay) which will run from March 1 to March 31, 2018. Follow along!*** #### Alexis’ Story A day in the life of an epileptic social butterfly with social anxiety. Hmm where do i start…. My day can start off pretty rocky just trying to remember to take my meds. Then what to wear, heck what was i just thinking about 5 minutes ago. I’ve noticed that some of my teeth have relocated in different spots in my mouth on while others have simply left the party without even letting me know. My headaches can be banging like hip hop and R&B. I’ve grown too love my lazy eye and crooked smile that comes with the territory. Focusing can can be overwhelming. Sometimes I’m all over the place then other days I’m all in. Going from super charged, too cranked out, helpless, super happy, depressed, auras off can make or break you. #### Hell-a-coaster days I find myself trying to make the best of my hell-a-coaster days because it takes almost everything in me to function at full potential these days. It’s like my mind and body are working on two different universes and working against each other. My head feels like a 100 rounds of fireworks going off at the same time, while my body feels like jelly without any control over my limbs. My body can sometimes be so sore you would have thought i bench pressed a Buick. I’ve even picked up vampire sleeping hours, wired for sound at 3am and needing mandatory power naps daily. Then there’s the whole thing where you don’t look sick so what is wrong with you? That’s when I sit people down and describe to them what it feels like to have epilepsy. My mood goes from super emotional to no emotion, being confused, mouth sore, chewed up tongue, bruising, headaches, body aches, mood swings all comes along with epilepsy. I make it my business to put my best foot forward and grab epilepsy by the head and tackle it to the floor daily. I refuse to allow epilepsy to take me out #strong proud purple survivor# --- NEXT UP: Be sure to check out the next post by Stephanie at [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com). For the full schedule of bloggers visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com). TWITTER CHAT: And don’t miss your chance to connect with bloggers on the #LivingWellChat on April 2 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Mar 18 EBR Posts --- ### [Epilepsy Blog Relay: Emma shares the family's VNS story](https://livingwellwithepilepsy.com/epilepsy-blog-relay/mar-18-ebr-posts/epilepsy-blog-relay-emma-shares-the-familys-vns-story.html) **Published:** March 11, 2018 **Author:** Jessica K. Smith **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/02/emma-murphy-255x300.jpg "emma murphy – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/home/attachment/emma-murphy)March 10***This post is part of the Epilepsy Blog Relay™ which will run from March 1 to March 31, 2018. Follow along!*** #### Emma’s Story Emma’s blog, [Little Mama Murphy](http://www.littlemamamurphy.co.uk/2018/03/hughs-vagus-nerve-stimulator-vns-story.html), shares stories from a family living with the *‘medical mystery’*, of an undiagnosed child. Stories include stressing about coming to terms with the lack of a diagnosis to videos showcasing recent successes. Emma jokes, “I’m basically using the Internet as free counselling! So far it seems to be working as I haven’t had a nervous breakdown. Yet!” Emma Murphy’s 7 year old son Hugh has complex, drug resistant epilepsy and life threatening seizures as a result of his recently diagnosed genetic condition FOX G1 Syndrome. She blogs about their journey towards a diagnosis and their triumphs and challenges with epilepsy at [Little Mama Murphy](http://www.littlemamamurphy.co.uk/2018/03/hughs-vagus-nerve-stimulator-vns-story.html). [Check out Emma’s Post ](http://www.littlemamamurphy.co.uk/2018/03/hughs-vagus-nerve-stimulator-vns-story.html) --- NEXT UP: Be sure to check out the next post by Naomi at . For the full schedule of bloggers visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com). TWITTER CHAT: And don’t miss your chance to connect with bloggers on the #LivingWellChat on April 2 at 7PM ET. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Mar 18 EBR Posts --- ### [Epilepsy Blog Relay: Heidi shares tips with the epilepsy community](https://livingwellwithepilepsy.com/epilepsy-blog-relay/mar-18-ebr-posts/epilepsy-blog-relay-heidi-shares-tips-epilepsy-community.html) **Published:** March 7, 2018 **Author:** Jessica K. Smith **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/02/hshafer-300x300.jpg "hshafer – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=17499)March 7#### Day 7 of the Epilepsy Blog Relay™ Epilepsy Education and Support was created to provide information and support for people with Epilepsy, caregivers and those who are interested in Epilepsy all over the world. #### Heidi’s Story I realize that more people need information about Epilepsy that is why I started the page Epilepsy Education and Support. [Read Heidi’s Story ](https://www.facebook.com/Epilepsy-Education-and-Support-555528831203718/) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Mar 18 EBR Posts --- ### [Epilepsy Blog Relay: Amanda Roper's Battle With Epilepsy](https://livingwellwithepilepsy.com/epilepsy-blog-relay/mar-18-ebr-posts/epilepsy-blog-relay-amanda-ropers-battle-epilepsy.html) **Published:** March 6, 2018 **Author:** Guest Contributor **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/11/1509732091772-2111952133-e1518909349317-210x300.jpg "1509732091772-2111952133 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/1509732091772-2111952133)March 6***This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay) which will run from March 1 to March 31, 2018. Follow along!*** My name is Amanda Roper! I’m here to share with you about my battle with epilepsy! I was born 6 weeks premature, and the doctors thought the umbilical cord was wrapped around my neck. I had hydrocephalus, and bleeding on my brain, which resulted in me having a hydrocephellic shunt placed when I was a baby. When I was in grade school at about age 6, or 7, I had my first grand-mal seizure, and my mom, and grandma had to rush me to the hospital. Since then, I’ve been on several different medications, but I still have petit-mal seizures! At age 12, I had a petit-mal seizure in front of my psychiatrist and my mom. My psychiatrist convinced my pediatrician to take me off all of my medications, and told her that they were just migraines. Though I did get migraines after the seizure ended, I knew that they were seizures the whole time! I went from age 12, to age 19 having petit-mal seizures until one night at a restaurant with my family, I had a grand-mal seizure, that lasted for about 45 minutes. I had to be taken to the hospital via ambulance. I’ve been on many different medications since then. I’m now 40 years old! Just this past March, I had surgery for a Vagal Nerve Stimulator Placement to try to reduce my seizures! I hate having epilepsy! But, I’m grateful to be alive today! --- **NEXT UP:** Be sure to check out the next post tomorrow by Heidi at . For the full schedule of bloggers visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com). **TWITTER CHAT:** And don’t miss your chance to connect with bloggers on the #LivingWellChat on April 2 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Mar 18 EBR Posts --- ### [Epilepsy Blog Relay: Diagnosed with epilepsy later in life](https://livingwellwithepilepsy.com/epilepsy-blog-relay/mar-18-ebr-posts/epilepsy-blog-relay-diagnosed-epilepsy-later-life.html) **Published:** March 4, 2018 **Author:** Jessica K. Smith **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/11/IMG_2403-300x298.jpg "IMG_2403 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/jewell-on-living-out-loud.html/attachment/img_2403)March 5***This post is part of the Epilepsy Blog Relay™ which will run from March 1 to March 31, 2018. Follow along!*** #### Living Out Loud In 2008, Jewell’s life drastically changed. She was diagnosed with a seizure disorder and since then, she has endured many EEG’s, EKG’s and MRI’s in an attempt to classify the types of non-epileptic and epileptic seizures Jewell experiences. Like many people diagnosed later in life Jewell had little knowledge of what Epilepsy was, and an even more limited knowledge about what life would be like living with it. Jewell hopes her blog gives women living with epilepsy some tips to make life a little easier. [Read Jewell’s Post ](http://liveoutloud4epilepsy.org/2017/11/23/3-lesson-learned-became-mother/) --- NEXT UP: Be sure to check out the next post tomorrow by Amanda at [livingwellwithepilepsy.com](http://livingwellwithepilepsy.com). For the full schedule of bloggers visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com). TWITTER CHAT: And don’t miss your chance to connect with bloggers on the #LivingWellChat on April 2 at 7PM ET. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Mar 18 EBR Posts --- ### [Epilepsy Blog Relay: Sarah Louise shares her experience with uncontrolled seizures](https://livingwellwithepilepsy.com/epilepsy-blog-relay/mar-18-ebr-posts/epilepsy-blog-relay-sarah-louise-shares-experience-uncontrolled-seizures.html) **Published:** March 4, 2018 **Author:** Jessica K. Smith **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/02/fff3ec_9f942a3b9a5245e88da162d36ec75a03mv2.png "fff3ec_9f942a3b9a5245e88da162d36ec75a03~mv2 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/home/attachment/fff3ec_9f942a3b9a5245e88da162d36ec75a03mv2)March 4***This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay) which will run from March 1 to March 31, 2018. Follow along!*** #### Day 4 of the Epilepsy Blog Relay™ Sarah Louise joins the Epilepsy Blog Relay with an update from her site, [Miss Sarah Louise’s Masterpieces and Munchies](https://misssarahlouise3591.wixsite.com/sarahlouisecooking). She shares her experiences with epilepsy, as well as tips on living with food allergies. As of February 28, Sarah Louise was back in the hospital again. Sarah Louise writes, “The whole month of February my seizures have been off the charts more so than during the past 6 months. [Read Sarah Louise’s Post](https://misssarahlouise3591.wixsite.com/sarahlouisecooking) --- **NEXT UP**: Watch for Jewel’s story on [liveoutloud4epilepsy.org](http://liveoutloud4epilepsy.org). For the full schedule of bloggers participating in the Epilepsy Blog Relay™ visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). **TWITTER CHAT:** And don’t miss your chance to connect with bloggers on the [\#LivingWellChat on April 2 at 7PM ET](https://www.facebook.com/events/205528086692429/). ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Mar 18 EBR Posts --- ### [Relationships and Epilepsy: Rachel on life with a chronic illness](https://livingwellwithepilepsy.com/epilepsy-stories/relationships-and-epilepsy-rachel-on-life-with-a-chronic-illness.html) **Published:** February 21, 2018 **Author:** Rachel Ehrhardt **Excerpt:** There are many reasons why people are either fearful or nervous to try romantic relationships with a chronic illness. I thought the best way to explain this would be to share some tips that I have found along the way. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2018/02/IMG_0509.jpg "IMG_0509 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=17523)Happy February, lovely readers! I hope you had a great January and are finding your stride this year. #### Relationships I wanted focus on romantic relationships this month because I believe people with seizure disorders struggle with many different facets of this world. There are many reasons why people are either fearful or nervous to try romantic relationships with a chronic illness. I thought the best way to explain this would be to share some tips that I have found along the way. If you haven’t followed me before, my name is [Rachel Ehrhardt](https://livingwellwithepilepsy.com/author/rachel). Hi, I’m so glad you are here. I am thirty-two years old and live in Houston, Texas. I have suffered with a seizure disorder for most of my life, as have two other family members. Here are a few things I’ve learned about having relationships while also having a chronic illness: #### Be comfortable with yourself You must be okay with yourself first and foremost. This means do not rush into relationships until you are comfortable with who you are, the things you enjoy doing, the foods you enjoy, the values that you stand for, and most importantly make sure that you are okay with your diagnosis on your own without bringing someone else into the mix. #### Communication is key This is something I have struggled with in the past. You must make sure that when you enter into any type of relationship that you are open with that person about expectations, what you are looking for, what your long term goals are, how quickly you want to move in the relationship #### Have a life on your own This is the one that I see affecting people the most early on in relationships. So many times we enter relationships head on and we forget that we had a life before the person came into our lives. You must remember the things you enjoy, the people you enjoy being around, and the alone time that we all so desperately need throughout the day. This can actually be the most detrimental to relationships because people that are struggling with communication in their relationship in the beginning tend to hide the fact that they are leaving portions of their lives behind. #### Epilepsy is something you have. It’s not who you are. When you enter into a relationship you need to be open and honest about your diagnosis. I personally have found that when you are not open in the beginning with your illness it leads to the opportunity for it to be harder as the relationship progresses. Epilepsy is something that we have. It is not who we are. You have to be okay with the fact that not all people are as comfortable with this diagnoses as we are (we probably have had a lot more time to get used to its facets than they have). Answer the questions they have, help them with understanding how it affects your life, but know that if they do not receptively accept this part of your life that there is someone out there is worthy of you. #### Compromise makes a difference Going into any adult relationship whether it is friendship or romantic you must realize that sometimes you may not always get the outcome that you are wanting. Sometimes you have to go into a situation and realize that the topic is very important to the other person or vice versa and that this is something that is not worth it to fight over in the grand scheme of life. #### Make time for mental and physical health I think this is one of the most important tips I can provide. As a person with epilepsy there are times in my life where I can pinpoint that I was not focusing on my physical or mental health and it slowly caused me issues with my ability to control my seizures. You must listen to your body. If you feel like you need sleep; get sleep. If you feel like you are not feeling right emotionally; go speak to a professional immediately. If you feel like your diet is struggling; make your diet a priority. #### The man in my life Now finally, I want to talk to you about the man in my life. Casey and I met rather unconventionally. We met online. We both had gotten out of tough relationships and were ready to start dating again. I had learned in the relationship before Casey that I had to be open and honest with my diagnosis and my faith. I decided after our second date that I needed to tell him about my diagnosis and how members of my family had the diagnosis as well. I was expecting him to run for the hills quite honestly, but ironically he acted the complete opposite. He wanted to know more and how he could help and support me. This slowly led to us having more and more conversations about parts of our lives, our goals, the things that we both enjoyed doing, and what we wanted out of a relationship. We began travelling, fishing, and attending church together on weekends that we were home. I think it hit me about two months in that I wanted to spend the rest of my life with him. He is the person that I call on my best and worst days. He is the most supportive person in my life even when sometimes I do not even believe in myself. He is my best friend. I will be upfront and honest that not every day in every relationship is perfect, but it is realizing at the end of the day that we can talk out any and every difficulty that we have together even when we do not get the outcome that we want. I have never been happier personally than I have in this relationship and I’m grateful for him in my life. So with this being said, WE ARE ENGAGED! We traveled to Puerta Vallarta, Mexico last month to celebrate my birthday. While we were there he surprised me with a proposal on a semi-private beach. We are beyond thrilled and excited to start this next phase of our lives! #### Check out the [other relationship stories here](https://livingwellwithepilepsy.com/category/livingwell/relationships). Or [submit your own story here](https://livingwellwithepilepsy.com/share-your-epilepsy-experience). ![author avatar](https://secure.gravatar.com/avatar/82d406d4460971f22d36968d14d1294a2a0c55c719c5b66a09acb2d2ad3872f2?s=300&d=mm&r=g) Rachel Ehrhardt Rachel Ehrhardt Streelman is from Houston , Texas. She has been a writer and contributor to Living Well with Epilepsy for two years. Rachel has had epilepsy since 9 months old. She comes from a family where her father, sister, and herself all have different forms of epilepsy. Rachel is married to Casey and they have a Cavapoo named Sheldon. [See Full Bio](https://livingwellwithepilepsy.com/author/rachel) [ ](https://livingwellwithepilepsy.com/author/rachel) **Categories:** Epilepsy Stories, Relationships --- ### [2nd Annual Epilepsy Netathon on Sat May 6](https://livingwellwithepilepsy.com/epilepsy-news-and-research/2nd-annual-epilepsy-netathon-on-sat-may-6.html) **Published:** May 4, 2017 **Author:** Jessica K. Smith **Excerpt:** Mark your calendar for the online event this Saturday May 6, 10am-6pm pst ( 1-9pm est ) , the “TALK ABOUT IT for Epilepsy” Netathon **Content:** [![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/05/Screen-Shot-2017-05-03-at-9.08.15-PM-e1493860501187.png "Screen Shot 2017-05-03 at 9.08.15 PM – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2017/epilepsy-news/2nd-annual-epilepsy-netathon-on-sat-may-6.html/attachment/screen-shot-2017-05-03-at-9-08-15-pm) #### 2nd Annual Netathon Mark your calendar for the upcoming online event **this Saturday May 6, 10am-6pm pst (1-9pm est)**, the “TALK ABOUT IT for Epilepsy” Netathon, sponsored by [Sunovion](http://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-mar-2017-sponsors-partners), to spread awareness and raise funds for epilepsy. This unique event, hosted by [Greg Grunberg](http://livingwellwithepilepsy.com/2017/blog-relay/greg-grunberg-on-why-it-is-important-to-talk-about-it.html) and centered around the epilepsy community, drew over 835,000 viewers last year. It will feature musical performances and interviews with stars from stage, screen, and music on why talking about epilepsy is so important. The event will also include epilepsy and seizure experts talking about key epilepsy-related topics. **For more information on the featured celebrities, bands and physicians, or how to tune in, visit the website, [www.epilepsy.com/Hollywood](http://www.epilepsy.com/Hollywood).** #### View the Live Event The event can be viewed live on **[www.epilepsy.com/hollywood](http://www.epilepsy.com/hollywood), [www.talkaboutit.org](http://www.talkaboutit.org%20)** and **[www.CBSlocal.com/epilepsy ](http://www.CBSlocal.com/epilepsy)** ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** News and Research, Sunovion **Tags:** Netathon --- ### [Epilepsy Blog Relay™: Spreading the word with Thunderclap](https://livingwellwithepilepsy.com/epilepsy-blog-relay/spreading-word-with-thunderclap.html) **Published:** March 5, 2016 **Author:** Jessica K. Smith **Excerpt:** Living Well With Epilepsy has created our very own using Thunderclap to spread the word about the Epilepsy Blog Relay™. **Content:** [![_EpilepsyBlogRelay2](http://livingwellwithepilepsy.com/wp-content/uploads/2016/03/EpilepsyBlogRelay2-300x157.png "_EpilepsyBlogRelay2 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2016/epilepsy-blog-relay/spreading-word-with-thunderclap.html/attachment/_epilepsyblogrelay2)Ever heard of Thunderclap? It is a new online crowdsourcing tool that has been used by TOMS, SONYPictures, Self Magazine, BBC among other brands and organizations. Living Well With Epilepsy has created our very own Thunderclap to spread the word about the [Epilepsy Blog Relay™](http://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-mar-2016-participants). #### What is Thunderclap? This is a tool that lets a message be heard when you and your friends say it together. Think of it as an “online flash mob.” Join the [Epilepsy Blog Relay Thunderclap](https://www.thunderclap.it/projects/38104-epilepsy-blog-relay-mar-16), and you and others will share the same message at the same time, spreading an idea through Facebook, Twitter, and Tumblr that cannot be ignored. #### What’s the goal? We have set a goal of 100 supporters (that social supporters NOT $$ supporters). At this writing we have reached 90% of our goal with 16 days to go. We just need 10 more: - epilepsy advocates - epilepsy caregivers - friends or family of those living with epilepsy And it only takes a few seconds. #### What exactly am I agreeing to when I authorize my Facebook or Twitter account? You’re allowing Thunderclap to share a SINGLE message on your behalf. This is only the case when you click the button on the campaign page to support with Twitter, Facebook, or Tumblr. #### Will you join the Thunderclap? Just visit our Thunderclap and show your support thru your FB or Twitter account (not dollars just social). ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Blog Relay, Mar 16 EBR Posts **Tags:** Epilepsy Blog Relay --- ### [Epilepsy Blog Relay™: It's time for another #LivingWellChat](https://livingwellwithepilepsy.com/epilepsy-news-and-research/its-time-for-another-livingwellchat.html) **Published:** November 30, 2017 **Author:** Jessica K. Smith **Excerpt:** We are coming to the end of our November Epilepsy Blog Relay™. As always, we will close with a live #LivingWellChat on Nov 30, at 7pm ET. **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2016/10/LWC1-300x251.png "lwc1 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/portfolio/nov30-16-3/attachment/lwc1)This post is part of the Epilepsy Blog Relay™ which will run from Nov 1 to Nov 30, 2017. Follow along!*** #### Don’t miss #LivingWellChat At the end of every *Epilepsy Blog Relay™,* we close with a live #LivingWellChat. Join us on Nov 30, at 7pm ET to celebrate and connect with some of our fantastic bloggers. The chat lasts about 1 hour. Just use the hashtag #LivingWellChat to filter out all the other social noise on twitter and join the conversation! #### This Month’s Topic*:* **Epilepsy and Stigma** Throughout the chat we will touch on the following: Q1: Do you believe there is a positive or negative stigma around epilepsy? Q2: What kind of stereotypes do you think exist about people with epilepsy? Q3: Are you willing (is it easy for you) to talk about epilepsy? Q4: What did it feel like when you (or your loved one) were first diagnosed? Q5: What are some pretty common worries you think people with epilepsy live with today? Q6: How can we change the conversation to make the discussion more open? #### **Click below to participate** #### How does the chat work? Lots of Twitter chats have a formal structure, only allowing a few minutes per question, but #LivingWellChat is more open. You will find #LivingWellChat is very simple: We start with a general topic, and the conversation flows from there. We encourage spontaneous discussion with tons of Q&A. #### Participating in the November #LivingWellChat 1\. Go to OR 2\. Be sure to **log in** using your twitter account \*\*IMPORTANT\*\* 3\. Set the chat speed as fast or slow as you prefer 4\. The Twitter feed will pop up with all the #LivingWellChat tweets. 5\. Be sure to introduce yourself when you come on the chat 6\. Join the conversation I really like Twubs, but some people prefer Tweetchat. Others prefer to participate within Twitter. It’s up to you! #### **Follow along even if you don’t have a twitter account** You won’t be able to chime in with your own comments but here are two ways to follow along: Option 1: Go to the Living Well With Epilepsy Facebook page and click on the [Twitter tab](https://www.facebook.com/livingwellwithepilepsy/app/294627540601598/). Option 2: Go to and watch the chat in the footer of the home page. #### Can anyone join in the conversation? Join in the conversation! Whether you have been living with epilepsy for decades, or if you are newly diagnosed, you and your loved ones will find something of interest on the next #LivingWellChat. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** News and Research --- ### [Epilepsy Blog Relay™: Natalie on Angels of Epilepsy](https://livingwellwithepilepsy.com/epilepsy-news-and-research/natalie-on-angels-of-epilepsy.html) **Published:** November 30, 2017 **Author:** Guest Contributor **Excerpt:** Day 30 of the Epilepsy Blog Relay: Today’s post comes from Natalie Y. Beavers, founder of Angels of Epilepsy. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/10/img_5962-e1509053282804-296x300.jpg "img_5962 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-nov-2017-participants/attachment/img_5962)Day 30 of the Epilepsy Blog Relay™ Today’s post comes from Natalie Y. Beavers, founder of [Angels of Epilepsy](http://www.aoepilepsy.org/angels_of_epilepsy_004.htm). #### From Natalie Angels Of Epilepsy Foundation was founded by Natalie Y. Beavers in 2008. Born and raised in Atlanta, GA, she is a proud and dedicated mother to her two boys. Natalie has had several experiences throughout her life dealing with this medical condition. Going through these experiences is what encouraged her to start the “Angels Of Epilepsy Foundation.” [Read Natalie’s Post ](http://www.aoepilepsy.org/angels_of_epilepsy_002.htm) --- NEXT UP: Don’t miss your chance to connect with bloggers on the #LivingWellChat tonight, November 30 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, News and Research, Nov 17 EBR Posts --- ### [Epilepsy Blog Relay™: Jade on embracing her diagnosis](https://livingwellwithepilepsy.com/epilepsy-blog-relay/jade-on-embracing-her-diagnosis.html) **Published:** November 29, 2017 **Author:** Guest Contributor **Excerpt:** Jade on living with Epilepsy: Embracing my diagnosis doesn’t mean giving up the fight. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/05/IMG_9720-e1496018973440-285x300.jpg "IMG_9720 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/portfolio/jun-4-jadenelson/attachment/img_9720)Day 29 of the Epilepsy Blog Relay™ Today’s post comes from Jade Nelson who writes [jadenelson.net](https://jadenelson.net/). #### From Jade Embracing my diagnosis doesn’t mean giving up the fight. I am not sure what I am fighting for anymore, so the word fight just isn’t in my vocabulary. Living 30 years with my Epilepsy diagnosis has been a roller coaster and I surely don’t feel the same way I did years ago. I can tell you it wasn’t just one thing that changed my view but many things. The simple fact is I came to this place of acceptance and it didn’t happen overnight. [Read Jade’s Post ](https://jadenelson.net/blog/) --- NEXT UP: Be sure to check out the next post tomorrow by Natalie at http://livingwellwithepilepsy.com. For the full schedule of bloggers visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/). TWITTER CHAT: And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, Nov 17 EBR Posts --- ### [Epilepsy Blog Relay™: Guess Who's Back](https://livingwellwithepilepsy.com/epilepsy-stories/leilas-ideas/guess-whos-back.html) **Published:** November 27, 2017 **Author:** Leila Shields **Excerpt:** Guess who's back on the Living Well With Epilepsy site and sharing her recent go-round with seizures...Read on to find out if your guess is right! **Content:** ![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/11/LeilaMatt-Sneak-Peek-5-200x300.jpg "Leila+Matt Sneak Peek-5 – Living Well With Epilepsy")*A peek at our beautiful wedding day Photo by httpwwwjoeltphotographycom****This post is part of the Epilepsy Blog Relay™ which will run from November 1 to November 30, 2017. Follow along!*** Cue [Slim Shady:](https://www.youtube.com/watch?v=YVkUvmDQ3HY) Guess who’s back, back again… If you guessed “Leila,” you’re right! It’s been a few months since I [shared a piece](https://livingwellwithepilepsy.com/author/leila-zorzie) on here. I’ve been busy with [work](https://livingwellwithepilepsy.com/2017/leilas-ideas/leilas-ideas-starting-new-job.html), wedding planning (then the wedding!!), and managing my [stress](https://livingwellwithepilepsy.com/2017/livingwell/emily-challenges-the-status-quo-of-her-mood.html) level to prevent any episodes from occurring. That last part brings me to my next point. If you guessed “seizures,” you are also right. After more than a decade without a tonic clonic seizure, one broke through my medications and occurred in October. Thankfully, my sweet, new husband was there and took care of me in the perfect way. He followed all the precautions & did everything right…I told him he should start training others! 🙂 There was no clear trigger and we’re all kind of puzzled about it. We hoped it was a fluke and that life could go on as normal. You can probably guess that life has not gone on as normal. The week after my seizure was filled with questions and constant micromanagement of my feelings. After continued brain issues, my neurologist determined that my medication was no longer effective at stopping seizures and I needed to switch meds. We racked our brains trying to figure out a trigger. Did the stress of work and wedding planning finally come to a point? I’ve been having daily migraines for a year now…was my brain trying to tell me that the meds weren’t working all that time? Were we (me, my health team, family, etc) too quick to explain away my symptoms by stress? Or do I have a new trigger, one that we can’t identify by just 1 seizure? There are so many questions. At the end of the day, the only thing that matters is that my medications are no longer working and I need a change. I’m back on the journey of endless questions and not enough answers. I had an MRI a few weeks ago which did not yield any immediate answers. I will be having an EEG in December that will hopefully give us some clues. Until then, I’m switching medications, noting every odd feeling down (hey, at least I’m completing a [New Year’s resolution](https://livingwellwithepilepsy.com/2017/livingwell/leilas-ideas-epilepsy-resolutions.html)), and praying that advances in technology will help solve this puzzle. I hope you’ll stick with me as my epilepsy journey gets a little more bumpy. I’ll be keeping you all updated. --- NEXT UP: Be sure to check out the next post tomorrow by Alison at . For the full schedule of bloggers visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/). TWITTER CHAT: And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/4cebf381fbce646cb0dbabef2348282b941c67524a3f03f08d6e328fa6c976cb?s=300&d=mm&r=g) Leila Shields Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania. [See Full Bio](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/leila.zorzie) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://lzorzie) **Categories:** Epilepsy Blog Relay, Leila's Ideas, Nov 17 EBR Posts **Tags:** eeg, Epilepsy Awareness Month, Epilepsy Blog Relay, Leila's Ideas, Living Well With Epilepsy, MRI, Tonic Clonic Seizures --- ### [Epilepsy Blog Relay™: Randi on Sonya's Story](https://livingwellwithepilepsy.com/epilepsy-blog-relay/randi-on-sonyas-story.html) **Published:** November 25, 2017 **Author:** Jessica K. Smith **Excerpt:** From Randi: I'm looking forward to everything that comes with having a newborn baby, but there is a cloud of guilt and sadness hanging over me. **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/11/21230808_701777556690930_2802189508317804213_n-300x300.jpg "21230808_701777556690930_2802189508317804213_n – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=17032)This post is part of the Epilepsy Blog Relay™ which will run from November 1 to November 30, 2017. Follow along!*** #### Excerpt from Sonya’s Story Within the next 2 weeks or so our little bear is going to become a big sister. I am eager and excited about this new addition to our family, yet I have not even packed my bag. (Full disclosure, I packed for Sonzee while in labor and running out the door). I really am looking forward to everything that comes with having a newborn baby, but despite the typical massive amount of pregnancy hormones circulating within my body, there is a cloud of guilt and sadness hanging over me. I do not want to assume everyone who follows Sonya’s Story understands the needs of a child like our dear Sonzee bear. I do not want to assume everyone knows how much care she requires. I try not to mention the sleepless nights encountered due to her constant alarming pulse oximeter letting me know her heart rate has skyrocketed (or on some occasions her oxygen has plumeted) and she is having another seizure. She is dependent on every level. She is unable to be left alone, she has to be buckled into swings and bouncers at all times. She is unable to be placed on the ground in a seated position “for just one minute” so something can be grabbed. She is unable to feed herself, and in fact in her case, her food bypasses her stomach and goes directly into her intestines so she doesn’t eat in the typical fashion. Her tube feedings are prepared in advanced and placed in the fridge and refilled periodically throughout the day and the night due to a continuous 20 hour a day feed. She requires medications, patching, and various position changes throughout the day on top of the daily needs of a child. Her needs are that of a newborn baby, in all ways, literally. [Read Randi’s Post ](http://www.sonyasstory.com/) --- NEXT UP: Be sure to check out the next post tomorrow by Dave at . For the full schedule of bloggers visit [livingwellwithepilepsy.com](http://livingwellwithepilepsy.com). TWITTER CHAT: And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Blog Relay, Nov 17 EBR Posts --- ### [Epilepsy Blog Relay™: Jewell on Living Out Loud](https://livingwellwithepilepsy.com/epilepsy-blog-relay/jewell-on-living-out-loud.html) **Published:** November 24, 2017 **Author:** Guest Contributor **Excerpt:** Jewell hopes her blog gives women who are pregnant the sense that they are not alone with a few lifestyle tips thrown in. **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/11/IMG_2403-300x298.jpg "IMG_2403 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=17019)This post is part of the Epilepsy Blog Relay™ which will run from November 1 to November 30, 2017. Follow along!*** #### Excerpt from Living Out Loud When we find out we’re expecting a new bundle of joy in our lives we begin to plan play dates, buy cute clothing and search for the coolest baby gear currently available. However, we don’t necessarily think about all the lessons built into motherhood. The daily interactions with our children that test, prepare, mold and uplift who we are. Throughout this journey of motherhood, I have experienced many lessons. Some of which, challenged my own experiences as a child, those that helped me become a better woman and a few that forced me to grow up. Jewell hopes her blog gives women who are pregnant the sense that they are not alone with a few lifestyle tips thrown in. [Read Jewell’s Post ](http://liveoutloud4epilepsy.org/2017/11/23/3-lesson-learned-became-mother/) --- NEXT UP: Be sure to check out the next post tomorrow by Randi at . For the full schedule of bloggers visit [livingwellwithepilepsy.com](http://livingwellwithepilepsy.com). TWITTER CHAT: And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, Nov 17 EBR Posts --- ### [Epilepsy Blog Relay™: Clair on Becoming a Mum with Epilepsy](https://livingwellwithepilepsy.com/epilepsy-blog-relay/clair-on-becoming-a-mum-with-epilepsy.html) **Published:** November 23, 2017 **Author:** Guest Contributor **Excerpt:** Clair writes, Becoming a Mum with Epilepsy. She hopes women will be given the information & support to feel more confident and less alone in becoming a Mum **Content:** ***[![](https://livingwellwithepilepsy.com/wp-content/uploads/2016/02/CRLeAR5WoAA_LL-.jpg_large-e1477752589926-300x300.jpg "CRLeAR5WoAA_LL-.jpg_large – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/portfolio/mar-19-clair-cobbold/attachment/crlear5woaa_ll-jpg_large)This post is part of the Epilepsy Blog Relay™ which will run from November 1 to November 30, 2017. Follow along!*** #### Day 23 of the Epilepsy Blog Relay™ Clair writes the blog, Becoming a Mum with Epilepsy. Clair hopes by sharing her experiences through her blog, women will be given the information and support to make them feel more confident and less alone in becoming a Mum. She wants women to remember, “You are a mum first and epilepsy is just a challenge to overcome.” Clair hopes her blog gives women who are pregnant the sense that they are not alone and that pregnancy is one of the most amazing experiences you can ever have whether or not you also have epilepsy. The site is also now a blog about her life as a mum and how epilepsy impacts her life including, all the fun times and the challenges. [Read Clair’s Post ](http://becomingamumwithepilepsy.blogspot.co.uk/) --- **NEXT UP:** Be sure to check out the next post tomorrow by Jewel at [liveoutloud4epilepsy.org](http://liveoutloud4epilepsy.org/). For the full schedule of bloggers visit [livingwellwithepilepsy.com](http://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). **TWITTER CHAT:** And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, Family, Nov 17 EBR Posts --- ### [Epilepsy Blog Relay™: Jessica on 'Wishes for Mercy'](https://livingwellwithepilepsy.com/epilepsy-blog-relay/jessica-on-wishes-for-mercy.html) **Published:** November 22, 2017 **Author:** Guest Contributor **Excerpt:** When our daughter was first diagnosed we were told that epilepsy would be easy to manage. Two years later and that has not come true. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/10/Screen-Shot-2017-10-26-at-4.37.21-PM.png "Screen Shot 2017-10-26 at 4.37.21 PM – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-nov-2017-participants/attachment/screen-shot-2017-10-26-at-4-37-21-pm)***This post is part of the Epilepsy Blog Relay™ which will run from November 1 to November 30, 2017. Follow along!*** #### Day 20 of the Epilepsy Blog Relay™ ***Excerpt from Wishes for Mercy:*** When our daughter was first diagnosed (and I mean within seconds and hours of her diagnosis, while we were still in the ER) we were told that epilepsy could be easy to manage and would not cause significant fallout in her life. These comments came from doctors, nurses, and families of those who’d been diagnosed with epilepsy in the past. They knew people or had learned in medical school that epilepsy was manageable and normal lives could be lived. Halfway through my daughter’s first week long stay in the PICU with unrelenting seizures, I remember looking at one of the young, pediatric interns who had just delivered one of these medically-minimizing speeches, on the heels of yet another medication increase, and asked him quietly through tears, “Sir, do you have children? Have you ever watched your own child suffer like this?” Tears filled his eyes as he finally took a moment to look beyond his clinical, rote response into the humanity of our current situation. “No, ma’am, I don’t have children yet. \[Pause. Then.\] I understand what you’re saying. This is not easy.” Fast forward nearly two years, and unfortunately those rote assurances have not yet applied in our child’s case. My daughter’s life has been anything but normal. She’s endured so much suffering that extends beyond the daily seizures themselves. In the beginning, trying to honor her pain and protect her privacy, we shared very little about what she was going through, her treatments, and what her days entailed. But, as the months rolled by, we began to realize that people did not have a clue what this disorder involved. They thought her days were relatively unaffected unless it was a day when a “big” (tonic clonic) seizure struck. Otherwise, they believed she was living her normal childhood. [Read Jessica’s Post ](https://wishesformercy.com/) --- **NEXT UP**: Watch for Clair’s story on . For the full schedule of bloggers participating in the Epilepsy Blog Relay™ visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). **TWITTER CHAT:** And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, Family, Nov 17 EBR Posts --- ### [Epilepsy Blog Relay™: A letter of thanks to caregivers](https://livingwellwithepilepsy.com/epilepsy-blog-relay/letter-of-thanks-to-caregivers.html) **Published:** November 17, 2017 **Author:** Guest Contributor **Excerpt:** Danielle's letter of thanks: When I was diagnosed with Epilepsy 6 yrs ago, a lot changed. I’m glad I had all of you there for me every step of the way. **Content:** **[![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/05/12801464_10205982883476928_5964141362359396488_n-300x300.jpg "12801464_10205982883476928_5964141362359396488_n – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/portfolio/jun-22-danielledaley/attachment/12801464_10205982883476928_5964141362359396488_n)This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from Nov. 1 to Nov. 30, 2017. Follow along!** #### A letter of thanks to my mom and my friends When I was diagnosed with Epilepsy almost 6 years ago, a lot changed and I’m glad I had all of you there for me every step of the way. Mom, I’m very thankful for you & everything you’ve done for me to fight epilepsy the best we could. Thank you for helping me on my worst of days.. From showering me and making my food for me to getting me dressed and ready for school. You even help me fight for the things I absolutely needed, when I couldn’t do it myself because I had allowed Epilepsy to take over my entire life. Thank you for the hundreds of dollars you had to spend to make sure I had all of my pills every month. I’m also extremely thankful for all of the research you did for the alternative medicines to help me, as well. To all of my friends, I am very thankful to each and every one of you that’ll be reading this. A few years ago none of you thought I’d ever be back to the same old Danielle. Thank you, to all of you that helped me walk when I refused to even be in a wheelchair. Thank you to everyone that carried me up & down flights of stairs. Thank you to all my friends who came over to my house and teamed up with my mom to help take care of me. You helped my mom get the break she definitely deserved. Thank you for all the years you helped me gain myself back, and grow stronger as a person, cheering me on and telling me I CAN do the things I want to. “Epilepsy should never change you.” --- **NEXT UP**: Watch for Soo’s story on . For the full schedule of bloggers participating in the Epilepsy Blog Relay™ visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). **TWITTER CHAT:** And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, Nov 17 EBR Posts --- ### [Epilepsy and AIDS: too much in common](https://livingwellwithepilepsy.com/epilepsy-news-and-research/epilepsy-and-aids.html) **Published:** December 23, 2013 **Author:** Jessica K. Smith **Content:** [![Some rights reserved by Steve Millar (UK)](http://livingwellwithepilepsy.com/wp-content/uploads/2013/12/9253457206_bdc08a4961_c-150x150.jpg "epilepsy/aids – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2013/12/9253457206_bdc08a4961_c-e1387819420564.jpg)Some rights reserved by Steve Millar UKThis year marks the 20th anniversary of the movie *Philadelphia*, which was a turning point in the AIDS movement. In 1993, people were dying as a result of HIV and AIDS related causes in great numbers. Those infected were living with such severe stigma that people were afraid to tell loved ones, afraid to get treatment, there was even fear of being associated with someone who was diagnosed with HIV or AIDS. The movie changed the conversation that was happening here in the US. However, it never would have happened without a band of activists who made enough noise to be heard. ## Now 20 years later a new movement is beginning. People with epilepsy are living with a frighteningly similar stigma. They are dying as a result of seizure and epilepsy related causes in great number. Often people living with epilepsy are afraid, with good cause, to tell employers tell loved ones, and to seek treatment for fear they will be ostracized from their community. Does all this sound familiar? It should. ## Epilepsy and AIDS Let’s take a look at the prevalence and mortality statistics of epilepsy and AIDS. [![Screen Shot 2013-04-03 at 11.41.19 PM](http://livingwellwithepilepsy.com/wp-content/uploads/2013/04/Screen-Shot-2013-04-03-at-11.41.19-PM.png "Epilepsy Awareness – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2013/04/Screen-Shot-2013-04-03-at-11.41.19-PM.png) > The disease is scarier than death itself. The disease is so messy, so devastating, so pervasive. It robs you of everything you hold dear. > > – Larry Kramer on AIDS This quote is interesting as it applies to both epilepsy and AIDS. ## A little history Although epilepsy has been around for centuries, people have only recently begun to talk about it. In the not too distant past people with epilepsy were: - Euthanized in Nazi Germany and US in early 20th century - Sterilized in the US through the mid 20th century - Not allowed to marry according to laws in states throughout the US until 1980 Again, sound familiar? Similar human rights infringements impacted the AIDS community. ## The Irony > **Plague:** A widespread affliction or calamity, especially one seen as divine retribution. There clearly have been parallels between the epilepsy and AIDS and epilepsy communities for a long time. Ironically, we just heard news that a drug which was developed to treat epilepsy has the potential to block the AIDS virus. In fact, Dr. Warner Greene, of Gladstone Institutes will begin a Phase II study on the drug next year. So now it’s time that the epilepsy community learns a few lessons from the AIDS community. We need to band together. We need to support one another. This is not a one man war. Nothing will change if we each stay quiet in our little corner of the world. It’s time to make some noise. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** News and Research --- ### [An epilepsy e-book with tips you can use](https://livingwellwithepilepsy.com/shop/downloads/epilepsy-ebook.html) **Published:** January 19, 2014 **Author:** Jessica K. Smith **Excerpt:** This epilepsy e-book comes packed with facts, tips on handling uncomfortable situations and great stories from people who are living well. **Content:** ## [![The Basics_Cover](http://livingwellwithepilepsy.com/wp-content/uploads/2014/01/The-Basics_Cover-231x300.png "The Basics_Cover – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/01/The-Basics_Cover.png)Book One: The Basics ### An epilepsy e-book This resource comes packed with facts, tips on handling uncomfortable situations and great stories from people who are living well with epilepsy. Get strategies to help guide how and when you tell your colleagues about your epilepsy. Hear from others living with it themselves. And learn about a few resources you can use on the go. \[purchase\_link id=”4659″ text=”Add to Cart” style=”button” color=”blue”\] ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Downloads --- ### [Epilepsy Blog Relay™: Soo's Epilepsy Corner](https://livingwellwithepilepsy.com/epilepsy-blog-relay/soos-epilepsy-corner.html) **Published:** November 18, 2017 **Author:** Jessica K. Smith **Excerpt:** Soo writes the blog Soo's Epilepsy Corner. Her site has been growing steadily for the past three years. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/05/IMG_2893-e1496614362698-300x291.jpg "IMG_2893 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/portfolio/jun-8-sooihm/attachment/img_2893)***This post is part of the Epilepsy Blog Relay™ which will run from November 1 to November 30, 2017. Follow along!*** #### Day 18 of the Epilepsy Blog Relay™ Soo writes the blog Soo’s Epilepsy Corner. Her site has been growing steadily for the past three years. Soo is living with epilepsy and has dedicated her efforts to raising epilepsy awareness. If you have not connected with wonderful epilepsy advocate, please take a moment to do so today! [Read Soo’s Post ](https://soosepilepsycorner.blogspot.com/) --- **NEXT UP**: Watch for Irene’s story on [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com). For the full schedule of bloggers participating in the Epilepsy Blog Relay™ visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). **TWITTER CHAT:** And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Blog Relay, Nov 17 EBR Posts --- ### [Epilepsy Blog Relay™: Casey's mission to spread epilepsy awareness | SPONSORED](https://livingwellwithepilepsy.com/epilepsy-blog-relay/caseys-story.html) **Published:** November 16, 2017 **Author:** Guest Contributor **Excerpt:** Casey felt vulnerable as a teenager with a neurological disorder, but now she is open about her epilepsy and raises awareness. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/10/nunes-300x300.png "nunes – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-nov-2017-participants/attachment/nunes)***This post is part of the Epilepsy Blogger Relay™ which will run from November 1st through November 30th.*** *One day, when Casey was only 14, she suddenly woke up confused, with her face in the dirt. Her mother stood over her, terrified. Shortly after this event, she was diagnosed with epilepsy. Like many people with epilepsy, for years Casey chose to keep her disease a secret. Now, however, this has changed. The vulnerability that she felt as a teenager with a neurological disorder has evolved to motivate Casey to be open about her epilepsy, and to work to increase awareness of epilepsy for everyone. She is now employed as a case manager for the* Epilepsy Foundation of Greater Chicago *hosting employment workshops, facilitating workshops for siblings of children with epilepsy, and engaging with the community at large.* #### Casey’s Story My name is Casey Nunes and when I was 14 I had my first convulsive seizure. What started as a few twitches in my left hand soon had me horizontal on the sidewalk on a Sunday morning. I think if we were as educated as we are today about epilepsy, then it would have been recognized much sooner. I’ve been fortunate to have lived in the Chicago area my life, surrounded by world class epileptologists and research studies. When I was 14, that didn’t matter to me. It’s hard enough being a teenager – I didn’t really care about anything but pretending to be “normal.” After high school, I received my Bachelor’s degree in journalism and entered the AmeriCorps program, serving at a local non-profit. I first worked with returning citizens, people recently released from prisons who were trying to go back to work; I helped adults learn how to use the computer for the first time; and I helped start a coalition of food pantries within the surrounding neighborhoods. I was awarded the Raul Yzagguire AmeriCorps Member of the Year in recognition of my service and a Spirit of Service award. The experience I had working with AmeriCorps changed the course of what I wanted to do, and I continued my path in non-profits. #### Epilepsy Awareness Eventually I ended up working at the [Epilepsy Foundation of Greater Chicago](http://epilepsychicago.org/), where I still am today. I have been humbled by the people I meet every day and grateful that I am able to help. I’ve organized four years of Epilepsy Awareness Advocacy Days, bringing dozens of people to the Illinois State Capitol to talk to legislators about the need for epilepsy funding and access to medication. I have heard so many stories from parents about their child’s need for equal education, siblings trying to understand what a seizure is, and individuals who just want to be normal. Some of the most frequently asked questions I get are about employment and rights around the Americans with Disabilities Act. #### Education Enrichment Fund Recently, I was a recipient of the 2017 Education Enrichment Find scholarship, made possible by CURE: Citizens United for Research in Epilepsy and Lundbeck. I plan to use my [Education Enrichment Fund (EEF) Scholarship](https://www.cureepilepsy.org/about-epilepsy/epilepsy-resources/EEF) to further my mission and remain engaged with [CURE](https://www.cureepilepsy.org/) through a podcast I will host monthly about epilepsy. It kickoffs in November for Epilepsy Awareness Month and we will go through a range of topics each time, interviewing experts in the field and personal stories. *The November 2017 Epilepsy Blog Relay™ was sponsored by* [Lundbeck](http://www.lundbeck.com/us) *– a global pharmaceutical company committed to improving the quality of life for those living with brain disorders, including epilepsy. Lundbeck connects people living with challenging seizures at* [www.LGSTogether.com](http://www.lgstogether.com/) *and through the* [LGS Together Facebook page](http://www.facebook.com/LGSTogether)*.* *The Citizens United for Research in Epilepsy (CURE) and Lundbeck* [Education Enrichment Fund (EEF) Scholarship](https://www.cureepilepsy.org/about-epilepsy/epilepsy-resources/EEF) *is a one-time scholarship (up to $5,000) to cover tuition, books, and course materials for those living with epilepsy, or for family members and caregivers of those impacted by the disease.* The *scholarship is to be used toward coursework advancing personal knowledge in research, health education, advocacy and/or awareness in relation to the recipient’s experiences with epilepsy.* --- **NEXT UP:** Be sure to check out the next post tomorrow by Soo at . For the full schedule of bloggers visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). **TWITTER CHAT:** And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, Nov 17 EBR Posts --- ### [Epilepsy Blog Relay™: Heidi's story on Epilepsy Education and Support](https://livingwellwithepilepsy.com/epilepsy-blog-relay/heidis-story.html) **Published:** November 15, 2017 **Author:** Guest Contributor **Excerpt:** Epilepsy Education and Support is a dynamic Facebook page created to provide information and support for all those affected by epilepsy. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/10/pizap.com15088246096151-300x300.jpg "pizap.com15088246096151 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-nov-2017-participants/attachment/pizap-com15088246096151)Day 15 of the Epilepsy Blog Relay™ Epilepsy Education and Support is a robust and dynamic facebook page which was created to provide information and support for all those affected by epilepsy. #### Heidi’s Story Living with epilepsy has taught Heidi to never give up and always have hope for a cure. She knows that more people need information about epilepsy. This month she has been sharing photos of those living with epilepsy along with other important updates. [Read Heidi’s Story ](https://www.facebook.com/Epilepsy-Education-and-Support-555528831203718/) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, Nov 17 EBR Posts --- ### [Epilepsy Blog Relay™: Audra's story takes a turn](https://livingwellwithepilepsy.com/epilepsy-blog-relay/audras-story-takes-a-turn.html) **Published:** November 11, 2017 **Author:** Guest Contributor **Excerpt:** Today’s post comes Audra Sisak who has recently learned she has aspergers. She's changed her site from "his life with autism" to "our life with autism". **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2016/05/IMG_2587-300x300.jpg "IMG_2587 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2016/aboutus-lwwe/emilys-perspective/coping-with-the-holidays.html/attachment/img_2587)Day 11 of the Epilepsy Blog Relay™ Today’s post comes Audra Sisak, who has recently learned she has Aspergers. As a result, she has changed the focus of her site from “his life with autism” to “our life with autism”. Audra, and the Sisak family, are thrilled to have readers along on their journey. They promise to keep you entertained, while increasing awareness and acceptance for disabilities like epilepsy and autism. [Read Audra’s Post ](https://ourlifewithautismsite.wordpress.com/) --- **NEXT UP:** Be sure to check out the next post tomorrow by Whitney Petit. For the full schedule of bloggers visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). **TWITTER CHAT:** And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, Nov 17 EBR Posts --- ### [Epilepsy Blog Relay™: Danielle on Lauren and epilepsy](https://livingwellwithepilepsy.com/epilepsy-blog-relay/danielle-on-life-with-lauren.html) **Published:** November 6, 2017 **Author:** Guest Contributor **Excerpt:** As Lauren's mom, I am constantly looking for information on how to manage her seizures better, while finding a balance to keep her mind on happy things. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/10/20171024_162005-e1509756240168-300x259.jpg "20171024_162005 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-nov-2017-participants/attachment/20171024_162005)**Danielle Tinsley has submitted this post on her daughter Lauren. This post is part of the [Epilepsy Blog Relay™](https://livingwellwithepilepsy.com/epilepsy-blog-relay), which will run from Nov. 1 to Nov. 30, 2017. Follow along!** #### Danielle’s Story My daughter, Lauren, began having seizures at 8 months old. But, Lauren did not start taking medication for them until she was six years old because they were so infrequent. For the most part her seizures are controlled but she does have breakthroughs occasionally. #### Life with Lauren Immediately after her seizures she is extremely tired. Lauren is back to herself after she gets some rest. As her mom, I am constantly looking for information on how to manage her seizures better, while finding a balance to keep her mind on happy things. I hope I’ve helped someone with our story. --- **NEXT UP:** Be sure to check out the next post tomorrow by Heather Lange. For the full schedule of bloggers visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). **TWITTER CHAT:** And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, Nov 17 EBR Posts --- ### [Epilepsy Blog Relay™: Gina on Gelastic Seizures](https://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-gina-on-gelastic-seizures.html) **Published:** November 5, 2017 **Author:** Guest Contributor **Excerpt:** Today’s post comes from Gina Moses, who writes about her life with epilepsy and gelastic seizures on her blog, ohhelloepilepsy.com. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/10/20171007_124821-e1509705588142-210x300.jpg "Gina – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-nov-2017-participants/attachment/20171007_124821)Day 5 of the Epilepsy Blog Relay™ Today’s post comes from Gina Moses, who writes about her life with epilepsy and [gelastic seizures ](https://www.epilepsy.com/learn/types-seizures/gelastic-and-dacrystic-seizures)on her blog, ohhelloepilepsy.com. Gina’s site is new on the scene but she has been living with epilepsy her whole life. We can’t wait to see how this new blogger takes on epilepsy. [Read Gina’s Post ](https://ohhelloepilepsy.com/) ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, Nov 17 EBR Posts **Tags:** Epilepsy Blog Relay, gelastic seizures --- ### [Epilepsy Blog Relay™: Shedding the Stigma of Epilepsy | SPONSORED](https://livingwellwithepilepsy.com/epilepsy-blog-relay/shedding-the-stigma-of-epilepsy.html) **Published:** November 2, 2017 **Author:** Guest Contributor **Excerpt:** It’s time to shed the stigma of a disease that affects one in 26 people. Epilepsy is unbelievably common, yet few people know anything about it. **Content:** [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/10/2017-0807-PCH-Doctors-0951-e1508617694300-252x300.jpg "Barrow Neurological Institute at Phoenix Children's Hospital – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-nov-2017-participants/attachment/barrow-neurological-institute-at-phoenix-childrens-hospital-2)Barrow Neurological Institute at Phoenix Childrens Hospital***This post was written by Angus A. Wilfong, MD, associate director of Barrow Neurological Institute at Phoenix Children’s Hospital and division chief of Pediatric Neurology. [Phoenix Children’s Hospital](http://barrow.phoenixchildrens.org/), is a Leadership Sponsor of the November 2017 Epilepsy Blog Relay.*** #### On Stigma and Epilepsy Epilepsy is no one’s “fault.” It’s time to shed the stigma of a disease that affects one in 26 people. Epilepsy is unbelievably common, yet few people know anything about it. And it’s strange, because just about everyone you meet can tell you something about Lou Gehrig’s Disease (or amyotrophic lateral sclerosis), a condition that is extremely rare, but enjoys a high level of awareness. The same is true of muscular dystrophy – thanks to Jerry Lewis’ advocacy. Michael J. Fox is publicly fighting Parkinson’s Disease, bringing a high level of understanding to a very rare condition. Epilepsy simply hasn’t generated the same awareness even though it’s one of the most common neurologic conditions. Roughly 3 million people are living with epilepsy in the United States today, and 150,000 new epilepsy diagnoses are made each year. But people just don’t talk about it. It doesn’t help that people who suffered from seizures were long-believed to be possessed by evil spirits that needed to be exorcised. That seems laughable today, yet I wonder how much the perception persists. From a funding perspective, other neurologic conditions – even those that affect just a tiny fraction of people – receive a much bigger share of the pie. This is incomprehensible to me, but points to the same problem: the epilepsy stigma is pervasive. When it comes to treatment, the issue is even more pressing. In my experience, people with epilepsy (and those raising children with the condition) often don’t get the education or support they need. This is especially true for people with intractable epilepsy who don’t respond to medication and experience frequent seizures. Others require so many meds that their brain function is impaired. And it absolutely breaks my heart – because it doesn’t have to be this way. Breakthroughs in treatment are transforming the lives of patients young and old – even those with intractable epilepsy. In fact, it’s the only neurologic condition that can be cured. Imagine – life without epilepsy But to identify the solution, you must first be willing to talk about the problem. And that’s what I do, day in and day out. My work is in treating epilepsy patients, but my mission is to strip away the stigma of the disease – to help children live a full and normal life, free of the symptoms and the perceived stigma and shame of epilepsy. --- **NEXT UP:** Be sure to check out the next post tomorrow by Bailey Flach, at . For the full schedule of bloggers visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). **TWITTER CHAT:** And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, Nov 17 EBR Posts --- ### [Epilepsy Blog Relay™: Bailey on exercise and epilepsy](https://livingwellwithepilepsy.com/epilepsy-blog-relay/bailey-on-exercise-and-epilepsy.html) **Published:** November 3, 2017 **Author:** Guest Contributor **Excerpt:** Day 3 of the Epilepsy Blog Relay focuses on exercise and epilepsy as a means to gaining independence while maintaining your safety. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/10/bailey-aura-borealis-1-300x300.jpg "bailey-aura-borealis – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-nov-2017-participants/attachment/bailey-aura-borealis-2)Day 3 of the Epilepsy Blog Relay™ Today’s post comes from Bailey Flach who writes about her life with epilepsy on her blog, [myauraborealis.com](http://www.myauraborealis.com/). Bailey’s article focuses on exercise and epilepsy as a means to gaining independence while maintaining your safety. [Read Bailey’s Post ](http://www.myauraborealis.com) --- **NEXT UP:** Be sure to check out the next post tomorrow by Gemma Jordan. For the full schedule of bloggers visit [livingwellwithepilepsy.com](https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). **TWITTER CHAT:** And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET. ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Blog Relay, Nov 17 EBR Posts **Tags:** Epilepsy Blog Relay, exercise --- ### [An inside look at Hurricane Harvey](https://livingwellwithepilepsy.com/life-with-epilepsy/an-inside-look-at-hurricane-harvey.html) **Published:** August 30, 2017 **Author:** Jessica K. Smith **Excerpt:** Two of our Living Well With Epilepsy writers are based in Houston, TX and they have sent images of Hurricane Harvey to share with you. **Content:** ### Hurricane Harvey Many of you living with epilepsy in the Texas and Louisiana areas have been directly affected by Hurricane Harvey. You may not be surprised to learn the team here at Living Well With Epilepsy has also felt the impact. Two of our writers are both based in Houston, TX: #### [Rachel Ehrhardt ](https://livingwellwithepilepsy.com/author/rachel) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/05/IMG_4694-150x150.jpg "IMG_4694 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/rachels-perspective/healthcare-debate-rachels-story.html/attachment/img_4694-2) and #### [Abby Gustus-Alford](https://livingwellwithepilepsy.com/author/abby) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/01/P22-150x150.jpg "– Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/livingwell/looking-forward-to-a-fresh-start.html/attachment/p22) I am happy to report both Abby and Rachel and their respective families are doing okay so far. But I ask you to please keep them in your thoughts. #### Houston Underwater Rachel sent along the following photos to give a sense of the flooding in Houston. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/08/Harvey-2.jpg "Harvey 2 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/livingwell/an-inside-look-at-hurricane-harvey.html/attachment/harvey-2) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/08/Harvey-5-1024x1024.jpg "Harvey 5 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/livingwell/an-inside-look-at-hurricane-harvey.html/attachment/harvey-5) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/08/Harvey-1.jpg "Harvey 1 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/livingwell/an-inside-look-at-hurricane-harvey.html/attachment/harvey-1) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/08/Harvey-6-1024x575.jpg "Harvey 6 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/livingwell/an-inside-look-at-hurricane-harvey.html/attachment/harvey-6) ### Make a difference If you are able to #### **Make a Financial Donation** - Support the **[American Red Cross](https://www.redcross.org/donate/hurricane-harvey?scode=RSG00000E017&utm_campaign=Harvey&gclid=EAIaIQobChMI06umpMr_1QIVy1cNCh0sPwhHEAAYASAAEgL2gPD_BwE&gclsrc=aw.ds&dclid=CKm2kKjK_9UCFVcNNwodnz4Byw)**. My husband is currently in Texas supporting the relief effort. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/08/IMG_5626-150x150.jpg "IMG_5626 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2017/livingwell/an-inside-look-at-hurricane-harvey.html/attachment/img_5626)Any support you can give to the the Red Cross is welcome. [Donate Today ](https://www.redcross.org/donate/hurricane-harvey?scode=RSG00000E017&utm_campaign=Harvey&gclid=EAIaIQobChMI06umpMr_1QIVy1cNCh0sPwhHEAAYASAAEgL2gPD_BwE&gclsrc=aw.ds&dclid=CKm2kKjK_9UCFVcNNwodnz4Byw) - The **[Hurricane Harvey Relief Fund](http://ghcf.org/hurricane-relief/)** was established by Houston’s mayor, Sylvester Turner, and is administered by the Greater Houston Community Foundation. - **[Houston Food Bank](http://www.houstonfoodbank.org/)** and the **[Food Bank of Corpus Christi](http://www.foodbankcc.com/)** are asking for financial donations. - The **[United Way of Greater Houston](https://www.unitedwayhouston.org/flood)** flood relief fund will be used to help with immediate needs as well as long-term services like minor home repair. Visit [their website](https://www.unitedwayhouston.org/flood/flood-donation) to donate or text UWFLOOD to 41444. - The **[L.G.B.T.Q. Disaster Relief Fund](https://my.reason2race.com/DNicol/HurricaneHarveyLGBTQDisasterReliefFund2017)** will be used to help people “rebuild their lives through counseling, case management, direct assistance with shelf stable food, furniture, housing and more.” It is managed by [The Montrose Center](http://www.montrosecenter.org/), Houston’s longtime community center for the area’s gay, lesbian, bisexual and transgender population. #### Give Blood - The **[South Texas Blood and Tissue Center](https://southtexasblood.org/harvey)** is experiencing a shortage. To donate, call 210-731-5590 or visit their website for more information. - [**Carter BloodCare**](http://www.carterbloodcare.org/) covers hospitals in North, Central and East Texas. To donate, call 877-571-1000 or text DONATE4LIFE to 444-999. #### Help for Animals - To help animals suffering from the disaster, visit the **[Houston Humane Society](https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=0ahUKEwiR3fWM1frVAhVH_4MKHZJWDKIQFggvMAA&url=http%3A%2F%2Fwww.houstonhumane.org%2F&usg=AFQjCNEYyKVi_xJZd9MfNdJF1pbXSbTX1g)** or the **[San Antonio Humane Society](https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=0ahUKEwi10f2V1frVAhUj0YMKHZFFDcoQFggnMAA&url=https%3A%2F%2Fsahumane.org%2F&usg=AFQjCNGcebez22OZuLaM-NokuLKNIDDtRA)**. - The [**Houston Society for the Prevention of Cruelty to Animals** ](http://www.houstonspca.org/)has set up an animal emergency response hotline (713-861-3010) and is accepting donations on its website. #### Help for Families - The **[Texas Diaper Bank](http://www.texasdiaperbank.org)** in San Antonio is asking for diapers and wipes, which can be dropped off in person or mailed to 5415 Bandera Road, Suite 504, San Antonio, Tex., 78238. #### For More Options - For more options, the Federal Emergency Management Agency recommends checking with the **[National Voluntary Organizations Active in Disaster](https://www.nvoad.org/hurricane-harvey/hurricane-harvey-how-to-help/)** for a list of trusted disaster-relief organizations in Texas. ### Let us know If you are in Texas or Louisiana and living with epilepsy let us know. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Life With Epilepsy **Tags:** Hurricane Harvey --- ### [Gemma's Story: It's time for a change when you're not seizure free anymore](https://livingwellwithepilepsy.com/epilepsy-stories/gemmas-story-time-for-a-change.html) **Published:** August 21, 2017 **Author:** Guest Contributor **Excerpt:** When I was first diagnosed I was in my early 20's and didn't really take my epilepsy too seriously. But two years ago I felt it was time for a change. I took better care of myself and became seizure free. That is until yesterday. **Content:** #### [![](https://livingwellwithepilepsy.com/wp-content/uploads/2017/08/me-1.jpg "me – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/?attachment_id=16424)Gemma’s Story Today is the day I can no longer say ‘…but it’s okay, I’m seizure free’ when explaining my condition. I have been diagnosed with epilepsy for over 7 years. I am the first one to make light of the situation, ‘No I can’t drive 🙁 but I get free public transport!!’ When I was first diagnosed I was in my early 20’s and didn’t really take it too seriously. I continued partying most nights and rolling into work for the breakfast shift.I continued having seizures, but as lack of sleep, alcohol and not taking my medication regularly seemed to be a trigger I just shrugged my shoulders and told myself it’s my own fault. It was only 2 years ago when I took a long look in the mirror and realized a change was needed. #### Time for a change When I have a seizure, I lose time – I lose the 10 minutes before and 45 minutes after. During this time I am in my own world. For me this time is funny. You get told all the funny things you have done or said and you have a good laugh at yourself. However, while you are laughing at the situation. Friends and family are laughing in relief. This is something I tried to ignore for a long time. I ignored the way my mum looked at me for a week after she saw my first seizure, I laughed when she tried explaining how panicked and worried she was as my lips were turning blue. I ignored everything that brought any reality to my condition. 2 years ago was when I stopped ignoring this. This was the time I had a seizure on my way to a morning meeting, I cut through the busy restaurant where breakfast was being served. (I was Restaurant manager) As I went down I hit my face quite severely. The customers tried to assist me until the staff (my friends) came and took over. My first memory of this situation was trying to get up off the floor as I was late for the meeting, it was only as I was looking up and saw the paramedics and all of my friends that I released what must have happened. Then I looked at my hands that were covered in blood and all I could vocalize was ‘oh…’ I was taken to the hospital as my friends were left to literally clean up the mess. #### A little bit of luck… and a sense of humor The next day I called in sick to work, my boss laughing as he obviously knew I wouldn’t be in, however, I still hadn’t released the severity of what had happened. Looking at my self in the mirror, my face bruised and swollen. Stitches holding my lips together, I realized I was lucky. So I got my act together, I took care of myself. and became seizure free. Until yesterday. I was frustrated, annoyed. I sat going through what could have happened, what I must have done to trigger this. After making an appointment with my specialist I thought about all the positive things that have happened in my life in the last 2 years. How much better and healthier I am now…. and how I can get my public transport card back….. Obviously that last bit is a little joke but always look for the positive things they will help you get through the hard times. --- *This personal story was submitted by Gemma. Any positive comments from readers are welcome!* ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories, Life With Epilepsy --- ### [Epilepsy campers, signup time is here](https://livingwellwithepilepsy.com/life-with-epilepsy/camp/epilepsy-campers-signup-time-is-here.html) **Published:** April 21, 2011 **Author:** Jessica K. Smith **Content:** [![](http://livingwellwithepilepsy.com/wp-content/uploads/blogger/-eV83ukDQ10Q/TbCnGRTNZyI/AAAAAAAAARY/8zIeXU8-4SE/s200/Camp_fire__Summer_Camp_2.jpg)](http://livingwellwithepilepsy.com/wp-content/uploads/blogger/-eV83ukDQ10Q/TbCnGRTNZyI/AAAAAAAAARY/8zIeXU8-4SE/s1600/Camp_fire__Summer_Camp_2.jpg) For most kids summer means playing outdoors, camps with silly names, hiking, swimming, canoeing, arts and crafts and more. The same is true for kids with epilepsy. In a recent issue of [EpilepsyUSA](http://www.epilepsyfoundation.org/epilepsyusa/magazine/upload/USA-2011-Issue2-Final.pdf), the [Epilepsy Foundation](http://epilepsyfoundation.org/)‘s flagship publication, the organization featured a roundup of epilepsy camps throughout the United States. [**US Camps**](http://www.epilepsyfoundation.org/epilepsyusa/magazine/loader.cfm?csModule=security/getfile&pageid=166816) [**Camp in Ontario, Canada**](http://www.epilepsyontario.org/) [**Camp in Mylor, Austrailia**](http://www.facebook.com/event.php?eid=119491541459159) To get a sense of what camp is like and why it is important, check out this video below produced by the [Epilepsy Foundation of Colorado](http://www.epilepsycolorado.org/). If you know of more epilepsy camps that you would like to have featured here, just comment below. claim token 39YD64SJXU9X ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Camp --- ### [Emily's Perspective: Back to the working world](https://livingwellwithepilepsy.com/epilepsy-stories/emilys-perspective/emilys-perspective-back-to-the-working-world.html) **Published:** May 5, 2015 **Author:** Emily Lawrence (Nee Donoghue) **Content:** [![Emily Donoghue, "Emily's Perspective"](http://livingwellwithepilepsy.com/wp-content/uploads/2014/07/livingwell-300x300.jpg "livingwell – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/07/livingwell.jpg)Emily Donoghue Emilys PerspectiveI’m going to be 21 in a few months and generally, Epilepsy aside, I am in a pretty healthy condition. Just recently I was given the all clear for working with Epilepsy. That means I am fit to work even though I still having a seizure every now and then. But that’s nothing compared to the past few months. It’s a miracle it seems. #### Thinking back I want to go back to the day I had my first [Tonic Clonic ](http://livingwellwithepilepsy.com/diagnosis)seizure. It was the 9th April 2013, I had a pretty normal day, I didn’t do anything strenuous or different to my usual daily routine, and I felt ok, not the best but not the worst. I was having a lovely evening, but towards bedtime I began to feel this sense of dread, as if something awful was about to happen. You may have read this on one of my first articles: [Emily’s story continues: Now adjusting to tonic clonic seizures](http://livingwellwithepilepsy.com/2013/personal-epilepsy-stories/tonic-clonic-seizures.html). #### Waking Up Even after regaining consciousness after Tonic Clonic seizures, it’s always a bit daunting when you wake up to a bunch of paramedics around you with needles in your arms. I always know it’s been a pretty bad [seizure](http://livingwellwithepilepsy.com/epilepsy-first-aid) when the ambulance is called. I have no memory of my seizures what so ever and I always feel completely cloudy and my motor skills always go a bit off. The Doctors always give me pain meds to ease my muscle pains, but after the meds wear off my entire body feels as if I just worked out for 10 hours straight. I feel scared most the time because I feel like I have no one to turn to or talk to and I am tired of feeling like a zombie from these medications, even though it’s been years since my first ever seizure. #### Moving Forward I am looking forward to getting back into the working world. But this process made me curious about you. I wonder how many of you are living with epilepsy and are working or are not working. Take a moment to answer the poll below. \[socialpoll id=”2269874″\] ![author avatar](https://secure.gravatar.com/avatar/5523d28ae8bbaedc9d082d51d29393ca490379cd31464b99ab3c7d50a49362ac?s=300&d=mm&r=g) Emily Lawrence (Nee Donoghue) 25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England. Emily's Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10. Based in UK. [See Full Bio](https://livingwellwithepilepsy.com/author/emilyd) [ ](https://livingwellwithepilepsy.com/author/emilyd) **Categories:** Emily's Perspective, Work **Tags:** #epilepsy #seizures, disability, poll, Work --- ### [Leila's Ideas: Stigma in the Workplace](https://livingwellwithepilepsy.com/epilepsy-stories/leilas-ideas/leilas-ideas-stigma-in-the-workplace.html) **Published:** June 1, 2015 **Author:** Leila Shields **Excerpt:** Epilepsy stigma can be a legitimate concern in the workplace but having a job is more about showing off your abilities. **Content:** ### Do I tell my employer about my epilepsy? [![Epilepsy Stigma](http://livingwellwithepilepsy.com/wp-content/uploads/2015/05/2012-07-25_16.38.57-300x252.jpg "Epilepsy Stigma – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/05/2012-07-25_16.38.57.jpg)**This post kicks off the [Epilepsy Stigma Blog Relay](http://livingwellwithepilepsy.com/epilepsy-blog-relay-2015) which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!** Congratulations! You just scored a new position in a great company, one that you can see yourself staying with and being fulfilled. Your co-workers are wonderful and you anticipate becoming fast friends with some of them. If that wasn’t enough, you get along with your boss which makes you even more excited about this opportunity. But still, there’s a looming question in your mind: do I tell my employer about my epilepsy? ### The Law This dilemma is not uncommon and is not limited to epilepsy. Any person who has an “invisible illness” may find themselves asking this question. So, how do you answer it? To start off you are not legally required, in the United States, to disclose your Epilepsy to your employer. During the application and interview process, your future employer may not ask you about your diagnosis. The employer may ask whether you can complete certain tasks, like operating machinery or driving. If you require certain accommodations to complete your job requirements, your employer is then allowed to ask additional questions. But, if your epilepsy is generally controlled and your functioning is not impaired by it, your employer does not have to know about your condition. ### Should I Say Anything? It might be wise to disclose your epilepsy. The most obvious reason is safety. Even individuals with well controlled epilepsy may have breakthrough seizures. If this happens at work, it is important that at least one person around you is aware of your diagnosis and has an action plan. This ensures your safety and those around you. Sometimes medications cause side effects that could impact the work environment. If you are changing medications or altering the dosage, telling your boss could be helpful. That way, there is an understandable explanation for a change in behavior at work. It also may help build rapport with your boss. ### But what about stigma? Perhaps you’re afraid that your employer will stigmatize you once you disclose your diagnosis. I have spoken with a few employers while writing this piece, and all of them agree that your job speaks much louder than your diagnosis. The biggest concern they had was safety. None of them, even when directly asked, had reservations about employing someone with a seizure disorder. As long as the job can be done safely, that is the most important thing. ### How should I tell them? The employers I spoke with didn’t express a specific way of revealing a diagnosis, just that it might be helpful information. I have done it in the past and have always done it very matter-of-factly. I sit down with my boss and explain that I have a diagnosis of Epilepsy that is well controlled with medication. I usually let him/her know what to do in the event I do have a seizure, thus creating an action plan. I also allow my boss to ask me questions. While this is not necessary, I want to answer any questions or concerns there are so we are both comfortable and confident moving forward. And, if a question were to come up that I was not comfortable with, I wouldn’t have to answer it. I’m providing the information on my own, not because I am required to under the law. Most often, it is usually your decision whether you want to disclose your medical information to your employer. There are significant benefits to doing so. Stigma may be a legitimate concern but having a job is more about showing off your abilities. If you do that, then the diagnosis takes a back seat to all you accomplish. ### For more information More information can be found at the following website: [U.S. Equal Employment Opportunity Commission](http://www.eeoc.gov/laws/types/epilepsy.cfm) ### Passing the Baton **NEXT UP:** Be sure to check out tomorrows post at [Education and Epilepsy Support](https://www.facebook.com/pages/Epilepsy-Education-and-Support/555528831203718) for more on Epilepsy Stigma. For the full Epilepsy Blog Relay schedule visit: ![author avatar](https://secure.gravatar.com/avatar/4cebf381fbce646cb0dbabef2348282b941c67524a3f03f08d6e328fa6c976cb?s=300&d=mm&r=g) Leila Shields Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania. [See Full Bio](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/leila.zorzie) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://lzorzie) **Categories:** Epilepsy Blog Relay, Leila's Ideas, Life With Epilepsy, Work **Tags:** Epilepsy Blog Relay, Stigma, Work --- ### [Meet the Purple Wedges](https://livingwellwithepilepsy.com/life-with-epilepsy/travel/meet-purple-wedges.html) **Published:** July 19, 2016 **Author:** Jessica K. Smith **Excerpt:** Meet the Purple Wedges, Living Well With Epilepsy’s newest guide, raising epilepsy awareness around the country. **Content:** [![IMG_1519](http://livingwellwithepilepsy.com/wp-content/uploads/2016/07/IMG_1519-300x225.jpg "IMG_1519 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2016/purple-wedges/meet-purple-wedges.html/attachment/img_1519)*Meet the Purple Wedges, Living Well With Epilepsy’s newest guide, raising epilepsy awareness around the country. The wedges will bring you on their purple epilepsy awareness adventures and you will see the sights from the perspective of these amazing traveling shoes. This is just a fun way to remind people that purple is the color for epilepsy and epilepsy needs a little awareness. Hope you follow along.* #### The Purple Wedges This year I’ve been traveling to a few different cities for epilepsy related conferences. It just so happens, I have a pair of amazing purple wedges. They are beautiful suede and patent leather wedges that my mother insisted I buy years ago. So, a few months ago I brought the shoes with me on a trip to New York City. This was an opportunity to take photos with the wedges (from their perspective of course) in fun, memorable locations. Of course, I brought you all along with me through Twitter using the hashtag #wedgestakemanhattan. I was delighted to find you followed the adventures of the purple wedges. Just in case you missed the trip I have included a few photos below. #### Purple Wedges in Manhattan [![2](http://livingwellwithepilepsy.com/wp-content/uploads/2016/07/2-1024x1024.png "2 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2) [![1](http://livingwellwithepilepsy.com/wp-content/uploads/2016/07/1-1024x1024.png "1 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/1) #### Purple Wedges in Chicago More recently, the wedges hit Chicago. The weather was beautiful and the city was energized. Of course we used the hashtag, #wedgestakechicago. During the trip, I stumbled (no pun intended) upon a concert in Millenium park. It made me happy to see families of all shapes and sizes, colors and races together enjoying beautiful music. Thank you Chicago for a momentary respite from the anger and tension felt around the world. [![1](http://livingwellwithepilepsy.com/wp-content/uploads/2016/07/1-1-1024x1024.png "1 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/1-2) [![2](http://livingwellwithepilepsy.com/wp-content/uploads/2016/07/2-2-1024x1024.png "2 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2016/purple-wedges/meet-purple-wedges.html/attachment/2-3) #### More from the wedges The wedges will hit the road again soon. Keep an eye out on Twitter for more Wedges updates. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Travel **Tags:** Epilepsy Awareness, Purple Wedges, Travel --- ### [Epilepsy Blog Relay™: Carys provides comfort](https://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-carys-provides-comfort.html) **Published:** March 5, 2017 **Author:** Jessica K. Smith **Excerpt:** On day 5 of the Epilepsy Blog Relay™, Carys reminds us "We can battle this together and educate society!" **Content:** #### [![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/02/IMG_8835-300x294.jpg "IMG_8835 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/portfolio/mar-5-carys-robinson/attachment/img_8835)Day 5 of the Epilepsy Blog Relay™ Carys Ann is 24 years old and has been diagnosed with temporal lobe epilepsy. She has scarring on her hippocampus which has a big impact on her emotions. Her site, is meant to inform people of the daily struggles epilepsy causes. It is also meant to provide comfort to others affected by epilepsy. Carys reminds us “We can battle this together and educate society!” #### From Carys Living with epilepsy has provided me with good life experiences that continue to challenge me daily. It’s not about hating epilepsy, it is about learning to accept it and thanking it for providing us with its daily challenges and hurdles. [Read Carys’ Post ](https://carysann25.wordpress.com) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Caregiving, Epilepsy Blog Relay, Mar 17 EBR Posts **Tags:** Epilepsy Blog Relay --- ### [Thinking about epilepsy camp?](https://livingwellwithepilepsy.com/life-with-epilepsy/camp/thinking-about-epilepsy-camp.html) **Published:** February 19, 2016 **Author:** Jessica K. Smith **Excerpt:** Have you been thinking about participating in a local epilepsy camp? Here you will find info on a few camps around the country. **Content:** [![DSCN2487](http://livingwellwithepilepsy.com/wp-content/uploads/2012/11/DSCN2487-300x225.jpg "DSCN2487 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/dscn2487)Have you been thinking about participating in a local epilepsy camp? Below you will find info on a few camps around the country. These camps offer a safe environment to enjoy fun activities such as swimming, boating and toasting marshmallows. For a full list of camps visit the Epilepsy Foundation’s page on [Epilepsy Camps](http://www.epilepsy.com/get-help/services-and-support/camps/epilepsy-camps). #### Epilepsy Foundation of Greater Chicago **Description:** Each summer, the Epilepsy Foundation of Greater Chicago’s Camp Blackhawk gives its young participants an experience they won’t soon forget. For one week, kids, ages 6-17, come together and enjoy all the fun activities and friendships that come with a trip to camp, while leaving behind various challenges epilepsy can bring to their daily lives. They are surrounded–-some for the first time–-by dozens of other kids who know exactly what having epilepsy means. At Camp Blackhawk, epilepsy is the norm. Campers get to experience all kinds of fun camp activities like swimming, zip lining, boating and campfires while in a safe and medically monitored setting. In the months leading up to camp, Foundation case managers build relationships with the campers, as well as their parents, and develop a solid grasp of their needs. Best of all, when campers are having the time of their lives at Camp Blackhawk, those case managers are right along with them, enjoying every minute just as much! There is no cost to attend camp, however, donations are accepted and welcomed. Space is limited and campers are accepted on a first-come, first-serve basis. Priority acceptance will be given to people within the Foundation’s service area. Applications will be available starting March 20, 2015. **Ages:** 6 to 17 years old **For more information:** #### Epilepsy Services Foundation | Florida **Description:** Participants enjoy a week long summer session of fun, adventure and independence. The “Boggy Campers” meet new friends and share their challenges while enjoying swimming, boating, fishing, arts and crafts, horseback riding, theater, archery, singing and dancing. Located in Eustis, Fla., the camp is specifically designed for children with chronic or life-threatening illnesses. Laughter and friendships abound on the 232 acres of tall pines, majestic oaks and nature trails. Camp Boggy Creek is a permanent, year round facility where children with chronic or life-threatening illnesses can come at no charge. Camp Boggy Creek’s staff and volunteers are comprised of professionals from the fields of medicine, nursing, administration and therapeutic camping. To register, please go to [Camp Boggy Creek’s website](http://epilepsysf.us12.list-manage.com/track/click?u=1e60e88fcf5120af90eacbdfc&id=88fbaa703c&e=6fa3c3a640): [www.boggycreek.org](http://www.boggycreek.org). The medical forms must be completed and returned to Camp Boggy Creek to complete the registration process for your child. **Ages:** 7 to 16 years old**For more information:** **** #### Epilepsy Foundation of Alabama | Alabama **Description:** Camp Evoked Potential is located at Camp ASCCA, the largest barrier free camp for people with disabilities located on Lake Martin in Central Alabama. Camp Evoked Potential is a 5-day overnight camp for children and teens living with epilepsy. The camp provides a great opportunity for kids to experience the fun of camp activities – swimming, fishing, sports, hiking and more—in a safe, medically monitored setting. Camp activities are designed to be accessible and adapted to campers’ individual needs and abilities. **Ages:** 6 to 18 years old **For more information:** [info@campascca.org ](mailto:info@campascca.org) #### Epilepsy Foundation of Connecticut **Description:** Channel 3 Kids Camp sits on 150 acres by the shores of the Skungamaug River, in Andover and Coventry, CT. There are more than 25 buildings that include sleeping cabins, an open air pavilion, dining hall, recreation hall, arts & crafts cabin, 42’ x 75’ swimming pool and more. This year, the camp has added Ashely’s Place, a brand new, fully accessible, air conditioned building with nurses quarters. However, the camp is so much more than an exceptional facility filled with incredible activities! They have over 103 years of experience of providing elite staff, quality programming, and endless adventure. A ‘Kids Camp Experience’ is the ultimate retreat for all children. **Ages:** 8 to 21 years old **For more information:** [allison@epilepsyct.com](http://www.epilepsy.com/get-help/services-and-support/camps/allison@epilepsyct.com) #### Earlier posts on Epilepsy Camp: > [Epilepsy campers, signup time is here](https://livingwellwithepilepsy.com/parenting/camp/epilepsy-campers-signup-time-is-here.html) > [Time to go camping](https://livingwellwithepilepsy.com/epilepsy-news/time-to-go-camping.html) #### Have you participated in camp? Let us know about your experience in the comments below. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Camp **Tags:** epilepsy camp --- ### [Leila's Ideas: Camping with Epilepsy](https://livingwellwithepilepsy.com/life-with-epilepsy/camp/leilas-ideas-camping-epilepsy.html) **Published:** July 24, 2016 **Author:** Leila Shields **Excerpt:** Camping can be so much fun! For those of us with epilepsy, it requires a little planning. Leila gives us tips how to make camping with epilepsy successful! **Content:** ![Camp Lambec, on the shore of Lake Erie.](http://livingwellwithepilepsy.com/wp-content/uploads/2016/07/10570503_10152197850425614_5742158227527090548_n-300x228.jpg "10570503_10152197850425614_5742158227527090548_n – Living Well With Epilepsy")My home away from home [Camp Lambec](http://www.capnwp.org/29/Camp+Lambec.html) on the shore of Lake ErieCan you believe it’s July already? For some of us, that means it’s the middle of summer! Camping is a popular activity during this time of the year. Whether your family visits a campground every year or you go to sleep away camps, there are a few things you need to remember when camping with epilepsy. #### Tips for camping with epilepsy: - **Don’t forget your medication:** I know this may seem like an obvious item to put on your packing sheet, but sometimes our medication makes us forgetful! Make sure your medication is the first thing you pack. If it helps, use a pill box with the days of the week on it so you have enough to last you the whole week. I always pack them in my purse because I take my purse with me everywhere, so there is no danger of me forgetting it! It also helps me remember where I packed it when I need to take them later! - **Make a packing list:** A few days before you’re set to leave, write up a list of everything you need to pack. In the days leading up to your departure, you can add things to the list that you forgot the first time. When you begin to pack, you’ll know exactly what you need and can cross off items on the list as you go. I do this every time I travel and really cuts down on the number of things I forget. - **Find out if there is a camp nurse:** If you are going to a sleep away camp, chances are there will be a camp nurse on hand. When you arrive, ask to meet the camp nurse so he/she knows who you are and you know who will help make this trip seizure-free. Explain that you have [epilepsy](http://livingwellwithepilepsy.com/epilepsy-101) and, if you have triggers that may show up at camp (extreme heat, for example), make sure the nurse knows these triggers. It will be easier for this person to care for you if he/she knows what type of care is needed. If you’re not going to a camp with a nurse, make sure someone on the grounds knows your diagnosis, how to help if you do have a seizure, and who to call in case of emergency. - **Camp Counselors:** Some camps, like those put on by the [Epilepsy Foundation](http://www.epilepsy.com/get-help/services-and-support/camps/epilepsy-camps), provide counselors for summer camps. Depending who runs the camp, these counselors may have some ideas about responding to a seizure. At [Camp Frog](http://www.efwp.org/programs/ProgramsCampFrog.xml), and others from the Epilepsy Foundation, counselors are trained in [seizure first aid](http://livingwellwithepilepsy.com/epilepsy-first-aid). If your counselor isn’t trained, consider teaching them. It won’t take long and then your counselor will be ready to help any time it is needed. A camp nurse should also know seizure first aid, but the more people who can help, the better. - **Know yourself:** You are your own expert. You know what activities you can and cannot do, how your body feels, and if you need a break. Don’t be afraid to speak up if you need to rest! Going to camp can be so much fun, just remember to put your health first. #### Let’s help one another Have you been to camp yet this summer? If you have, what was your secret to having a great week while camping with epilepsy? If you haven’t been, do you have questions about camping with epilepsy? Leave a note in the comments below so we can help each other have a wonderful summer that is full of fun! ![author avatar](https://secure.gravatar.com/avatar/4cebf381fbce646cb0dbabef2348282b941c67524a3f03f08d6e328fa6c976cb?s=300&d=mm&r=g) Leila Shields Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania. [See Full Bio](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/leila.zorzie) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://lzorzie) **Categories:** Camp **Tags:** camp, camping, camping with epilepsy, epilepsy, Epilepsy Awareness, epilepsy stigma, Leila's Ideas, Living Well With Epilepsy --- ### [Getting an Advanced Degree with Epilepsy](https://livingwellwithepilepsy.com/life-with-epilepsy/school/getting-an-advanced-degree-with-epilepsy.html) **Published:** August 6, 2015 **Author:** Leila Shields **Excerpt:** Anyone with Epilepsy knows that school can present a number of challenges, including people thinking you cannot complete an advance degree. I’m here to tell you that you can. Here are some helpful tips for your journey. **Content:** [![Celebrating my final day as a student at Duquesne University.](http://livingwellwithepilepsy.com/wp-content/uploads/2015/08/20150624_203859-e1438823498133.jpg "20150624_203859 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/08/20150624_203859-e1438823498133.jpg)Celebrating my final day as a student at Duquesne UniversityThis summer marks my final days as a student! For now, that is. I have completed my Master’s degree and I have to say, it feels wonderful. I have a passion for school but after spending over 20 years studying, I am thankful to have a break. Anyone with [Epilepsy](http://livingwellwithepilepsy.com/epilepsy-101) knows that school can present a number of challenges, including people who think that individuals with this diagnosis cannot achieve higher education. I’m here to tell you that you can get that advanced degree, and offer some helpful tips for your journey. #### Do Your Research What do you need in a school? Typically, when looking at colleges, we’re told to look at the programs we’re interested in, what clubs we may want to join, and what various housing options are. These are all key parts of the collegiate experience! As an individual with [Epilepsy](http://livingwellwithepilepsy.com/epilepsy-by-the-numbers), I also had to look at other parts of college towns. How close am I to a hospital and pharmacy? What is the medical care like on campus? One of the most important parts of my undergraduate experience was the care I received by the campus medical center. Never underestimate the importance and necessity, but sometimes dearth of knowledgeable professionals on a college campus. Another service I used frequently was the disability support center (DSC). How accessible are the disability support services and personnel when you need accommodations for classes? These features of a college can create a positive and successful experience for you. These features can apply to both undergraduate and graduate degrees. I researched and used nearly all of these services throughout my post-high school days; some were more crucial than others but all were an integral part of my success. #### I’m on campus…now what? Okay, so you’ve [made it to school](http://livingwellwithepilepsy.com/2010/epilepsy-news/heading-to-college-would-scholarship.html), you’ve moved in to your apartment or dorm, and you’re ready to begin classes. As a student, it is important to learn the buildings, become friends with your roommate if you aren’t already, and explore what the campus has to offer. As a student with Epilepsy, there are additional steps. Make an appointment with the disability support center staff and discuss potential accommodations. Be sure to bring any paperwork requested to this meeting, as it may be needed to put your accommodations into place. Even if you do not need these modifications, the staff can be very helpful when deciding how/when to tell your professors about your Epilepsy, which professors are more sensitive to those with disabilities, and assistance in allocating your time so you’re not exhausted from all the activities that college has to offer. I could go on for days about how the DSC has helped me! Locate pharmacies that are close to you and maybe even introduce yourself to the pharmacists. In my experience, pharmacists and employees are so personable and even more helpful when you have a personal connection with them. #### Potential Problems Of course, the road is not always sunny. Sometimes we run into problems. A professor might be boring or unkind, a class might prove to be more difficult than you imagined, or you may experience medical issues while at school. Don’t panic. Use your resources. If you have accommodations, see if you can use them in your class. Maybe you’re able to record the professor while he/she gives a lecture, and be able to listen back while studying, instead of trying to rapidly write his words. Ask if an extension can be given on an assignment. You may have to work harder than others in your class. That’s okay! I had to find creative ways to study because I had to spend so much extra time doing so. Finding ways to study that worked for me made my time in school easier and allowed me to be successful. Consult with your doctors to determine what treatment is best for any medical problems. Be patient if professors or peers are not understanding with you bring up your Epilepsy. Not everyone is informed about seizures! Use this time to educate to lessen the [stigma](http://livingwellwithepilepsy.com/epilepsy-blog-relay-2015) they have. #### Your Advanced Degree Collegiate life has been one of the most exciting and trying experiences thus far. Epilepsy didn’t make it easier but I did learn a different perspective on the entire experience. Just because you have a diagnosis does not mean you cannot achieve great things! You have the ability to do whatever you want as long as you work hard and use your resources wisely. As a girl, my parents were told not to expect me to go to college. I’m proud to have proven that theory wrong. **Do you have questions about achievement with Epilepsy in undergraduate or graduate school? Drop me a line in the comments!** ![author avatar](https://secure.gravatar.com/avatar/4cebf381fbce646cb0dbabef2348282b941c67524a3f03f08d6e328fa6c976cb?s=300&d=mm&r=g) Leila Shields Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania. [See Full Bio](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/leila.zorzie) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://lzorzie) **Categories:** School **Tags:** #epilepsy #seizures, College, epilepsy stigma, Leila's Ideas, living with epilepsy, school, university --- ### [Leila's Ideas: Back to School with Epilepsy](https://livingwellwithepilepsy.com/life-with-epilepsy/school/leilas-ideas-back-school-epilepsy.html) **Published:** August 9, 2016 **Author:** Leila Shields **Content:** ![Classrooms are ready to be full of students, ready to learn and succeed!](http://livingwellwithepilepsy.com/wp-content/uploads/2016/08/499-300x225.jpg "499 – Living Well With Epilepsy")Classrooms are ready to be full of students ready to learn and succeedIt’s that time of year again! The family vacations have ended, pencils and notebooks have been purchased, and clothes are picked out for the first day of school. Kids all over the country are going back to school and, for many, it is exciting! Back to school may mean homework, but it also means chatting with old friends, beginning extracurricular activities again, and finding new adventures to make memories from. For students with epilepsy, going back to school can be more complicated. I’ve outlined a few speed bumps those of us with epilepsy may encounter when starting school and how to handle them. #### Explaining Epilepsy…Again Sometimes school personnel have been taught and [trained](http://www.efwp.org/programs/ProgramsPSA.xml) to understand and respond to seizures. Unfortunately, not all educators are so lucky. Before school begins, it is good to find out who your (or your child’s) teacher will be and explain epilepsy to him or her. My mom always wrote my teachers a letter and took it in to a meeting before school began. That way, teachers had documentation to refer back to if they had any questions about my seizures and they also had a chance during the meeting to get answers to any questions or concerns they had. I always had the option of going to the meeting with my mom and, once I became more comfortable with my diagnosis, I began attending and participating in them. It was a great way to foster a relationship with my teacher as well as calm any fears I had about being in school again. #### Meet the Nurse Every school is different; some have one nurse for each building in a district, while others have one nurse to cover everyone. Whether you have known your school nurse for years or you’re entering a new school with a new nurse, it is essential to talk to him/her. While it is not necessary to meet with the nurse, it can be helpful. A nurse is trained in the health field, so he/she should know more about epilepsy. You can talk to the nurse about your specific needs and how to respond to your type of seizure. While there are general rules for responding to a seizure, each person is different and it’s important that you or your child get the care that you need. #### Accommodations When I was in school, I had special [accommodations](http://livingwellwithepilepsy.com/2012/epilepsy-news/backtoschoolwithepilepsy2012.html) to help me be successful. To get these, I went through testing and had a document called an IEP ([Individualized Education Plan](http://www2.ed.gov/parents/needs/speced/iepguide/index.html)) that outlined what help I was allowed. My parents and I met with a school psychologist, the guidance counselor, the principal, and teachers to make sure everyone was on the same page. Check with your school district to find out what is required for an IEP, a 504, or any other accommodations to help you or your child to be successful. #### Stick to a Schedule Eating right, exercising, and [getting enough sleep](http://livingwellwithepilepsy.com/2016/leilas-ideas/leilas-ideas-excuse-sleep.html) are essential to everyone’s health. It is even more important for those of us with epilepsy. Make sure to get yourself back into a routine full of sleep, balanced meals, and stress relief. All of these things not only help your body function normally but they also keep your brain working! Don’t get so busy that you and your child forget to take care of yourself. Parents: this goes for you, too! Beginning a new school year should be exciting and filled with fun! Don’t allow epilepsy to steal that joy from you and your child. Find out what it will take for you or your student to be successful. That may be extra help in school, a specific bed time, or taking a walk every night. You know your body best and what you need to stay healthy. Don’t forget to have fun! Enjoy all the activities that come with the school year. #### What are some things that you make sure to do every school year? How do you make yourself (or your child) successful? Help each other in the comments below! ![author avatar](https://secure.gravatar.com/avatar/4cebf381fbce646cb0dbabef2348282b941c67524a3f03f08d6e328fa6c976cb?s=300&d=mm&r=g) Leila Shields Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania. [See Full Bio](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/leila.zorzie) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://lzorzie) **Categories:** School **Tags:** epilepsy, Epilepsy Awareness, Epilepsy in Everyday Life, Leila's Ideas, school --- ### [Epilepsy Blog Relay™: Clair's Story](https://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-clairs-story.html) **Published:** June 2, 2017 **Author:** Jessica K. Smith **Excerpt:** Clair hopes her blog gives women who are pregnant with epilepsy the sense that they are not alone. **Content:** ***[![](http://livingwellwithepilepsy.com/wp-content/uploads/2016/02/CRLeAR5WoAA_LL-.jpg_large-e1477752589926.jpg "CRLeAR5WoAA_LL-.jpg_large – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/portfolio/mar-19-clair-cobbold/attachment/crlear5woaa_ll-jpg_large)This post is part of the Epilepsy Blog Relay™ which will run from June 1 to June 30, 2017. Follow along!*** #### Day 2 of the Epilepsy Blog Relay™ Clair writes the blog, Becoming a Mum … with Epilepsy. Being pregnant with epilepsy can be quite scary. Clair hopes her blog gives women who are pregnant the sense that they are not alone and that pregnancy is one of the most amazing experiences you can ever have whether or not you also have epilepsy. The site is also now a blog about her life as a mum, her experiences of how epilepsy impacts life and also just general mummy things, all the fun times and the challenges. [Read Clair’s Post ](http://becomingamumwithepilepsy.blogspot.co.uk/) --- **NEXT UP:** Be sure to check out the next post tomorrow by Karen at . For the full schedule of bloggers visit [livingwellwithepilepsy.com](http://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants). **TWITTER CHAT:** And don’t miss your chance to connect with bloggers on the #LivingWellChat on June 30 at 7PM ET. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Blog Relay, Jun 17 EBR Posts, Pregnancy **Tags:** Epilepsy Blog Relay, June 17 EBR Posts --- ### [Abby's Reflections: Looking forward to a fresh start](https://livingwellwithepilepsy.com/life-with-epilepsy/looking-forward-to-a-fresh-start.html) **Published:** January 17, 2017 **Author:** Abby Gustus-Alford **Excerpt:** January is always a time to look back and reflect on the year before. It’s a fresh start and that means new exciting possibilities **Content:** [![](http://livingwellwithepilepsy.com/wp-content/uploads/2017/01/P22-289x300.jpg "– Living Well With Epilepsy")](http://livingwellwithepilepsy.com/2017/abbys-reflections/looking-forward-to-a-fresh-start.html/attachment/p22)January is always a time to look back and reflect on the [year before](http://livingwellwithepilepsy.com/2017/jessicas-posts/year-in-review-top-stories-of-2016.html). It’s a fresh start and that means new exciting possibilities, but it’s also a time to think about what happened the year before. Last year was a tough year on me. Many great things happened, so for that I am thankful, but the end of 2016 was tough. I had many health problems toward the end of the year, and I’m sure all of you can relate to that. #### Changing medications The last few months of the year, my doctor wanted me to try to [get on one medication](http://livingwellwithepilepsy.com/2015/traveling-with-epilepsy/traveling-with-epilepsy-takeoff.html). I was taking Keppra and Lamictal at the time. The goal (which I was totally on board with) was to get me to just Lamictal. That process was going to take approximately a month and a half. I had to slowly increase the Lamictal and then wean myself off of Keppra. While I was really excited about going to one medication, I was nervous about it. For the first time in nearly ten years, I was going to be changing up my medicine. I was feeling extreme anxiety and was very stressed out. My fear of having a seizure was creeping in to my everyday thoughts and would plague me when I would try to go to sleep (I have nocturnal seizures). Every couple weeks, I would go get blood drawn and anxiously await the results from my doctor to see if my Lamictal levels were high enough to stop taking the Keppra all together. Turns out, with the end of the year so close, I never got there. My Lamictal levels were never high enough. I knew that I wanted to take a break and spend some much needed time with my family the last two weeks of the year. I did not want to worry during that time about having a seizure, so I spoke with my doctor and asked that we revisit our plan at the beginning of 2017. He was more than understanding, and we agreed on a new plan. I would relax and spend time with my family and start fresh in 2017. I feel confident this year we will get there, and I look forward to giving an update on how taking just one medication makes me feel. #### Here’s to a fresh start Moral of the story, the last few months of 2016 were tough health-wise. While I’ve never been one to be really excited about what is always typically considered to be a “fresh start,” this year, I’m very excited about it. Here’s to 2017 and one medicine! ![author avatar](https://secure.gravatar.com/avatar/fc6da7355dbaf3b5333da396f069a80e1cb0f14ba7b3b3c9d7276454b2c67b50?s=300&d=mm&r=g) Abby Gustus-Alford Abby Gustus Alford was diagnosed with epilepsy at the age of 12 after multiple grand mal seizures over six-mos. She has a BA from Purdue and her Master’s from Northwestern. [See Full Bio](https://livingwellwithepilepsy.com/author/abby) [ ](https://livingwellwithepilepsy.com/author/abby) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://abbyg_alford) **Categories:** Life With Epilepsy --- ### [Code4Armour™: medical alert band speaks when you can't](https://livingwellwithepilepsy.com/life-with-epilepsy/code4armour-band.html) **Published:** October 3, 2014 **Author:** Jessica K. Smith **Excerpt:** Code4Armour™ recently unveiled a battery-free, shock and water resistant medical alert band. The band works with a mobile app to provide medical information. **Content:** [![medic-mark](http://livingwellwithepilepsy.com/wp-content/uploads/2014/09/medic-mark1-300x300.jpg "medic-mark – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/09/medic-mark1.jpg)Code4Armour™ recently unveiled a battery-free, shock and water-resistant medical alert band. The novel band works in conjunction with a mobile app to provide important information when the person. The device is particularly effective when the person can’t speak for themselves. [Mark Litman](http://get.code4armour.com/www/index.php/about/team), the company’s Founder and Chief Evangelist, took a few minutes away from his product launch to speak with [Living Well With Epilepsy](http://livingwellwithepilepsy.com/about-us) about how this new band. ### On Code4Armour™ JESSICA KEENAN SMITH: Mark, thank you again for speaking with Living Well With Epilepsy during such a busy time. Can you give us a sense of how [Code4Armour™](http://www.code4armour.com) is different from other medical alert bracelets? MARK LITMAN: Sure, I’d be happy to. Those first minutes at an emergency scene are critical. Code4Armour™ is a wearable device and mobile app that can provide EMTs and Paramedics instant access to vital medical Information when a person is experiencing a medical emergency. Code4Armour™ literally speaks when the patient can’t. [![C4A-Band](http://livingwellwithepilepsy.com/wp-content/uploads/2014/09/C4A-Band1-300x300.jpg "C4A-Band – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/09/C4A-Band1.jpg)SMITH: How does it work? LITMAN: The Code4Armour™ solution is on a playing field all its own. It’s the only alert system with the capability to deliver vital health information in seconds and hands-free via our patent pending VitalSpeak™ text-to-speech engine. SMITH: How does this work with a mobile phone? The alert service communicates health information to first responders in just seconds in the event of an emergency. ### The Inspiration SMITH: I’m curious, what inspired the band? LITMAN: As a paramedic who has attended thousands of medical emergencies, I know that one of the biggest challenges when arriving on scene can be accessing critical information on the patient. This gets amplified when the patient has a special medical need such as epilepsy. [![c4a_android](http://livingwellwithepilepsy.com/wp-content/uploads/2014/09/c4a_android-300x300.jpg "c4a_android – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/09/c4a_android.jpg)SMITH: Have any first responders tried out the band? LITMAN: We have been working with the 52 EMS services across Ontario implementing pilot programs. Our goal is to have every service in Ontario utilizing Code4Armour™ by the end of the year. SMITH: That’s amazing. What sort of response have you had from EMTs and Paramedics? LITMAN: The organizations we have spoken to are relieved when they see the Code4Armour™ solution in action, often communicating that it’s exactly the sort of tool they’ve been hoping for. SMITH: What is the benefit to a person with [epilepsy](http://livingwellwithepilepsy.com/epilepsy-101 "Epilepsy 101")? LITMAN: Code4Armour™ can provide support to people unable to communicate for themselves in an emergency. It is also a great resource for people with conditions that effect gross or fine motor skills. ### How to Order SMITH: What is the best way to order a band? LITMAN: Between now and November 9 you can order your band through our IndiGoGo crowdfunding campaign. SMITH: How can we participate in the [crowdfunding campaign](https://www.indiegogo.com/projects/code4armour-one-tap-can-save-a-life). LITMAN: I’m really pleased to announce that Code4Armour™ reached 25% of its overall funding goal within the first six hours. Your order can help us get bands in the hands as quickly as possible. [IndiGoGo Campaign ](https://www.indiegogo.com/projects/code4armour-one-tap-can-save-a-life) ### For More Information For more updates visit Code4Armour™ on [Facebook](http://facebook.com/Code4Armour%20) and [Twitter](twitter.com/code4armour). ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Life With Epilepsy **Tags:** product review --- ### [Have you heard about Studio E](https://livingwellwithepilepsy.com/life-with-epilepsy/heard-about-studio-e.html) **Published:** January 26, 2015 **Author:** Jessica K. Smith **Content:** [![studioEheadline](http://livingwellwithepilepsy.com/wp-content/uploads/2015/01/studioEheadline.jpg "studioEheadline – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/01/studioEheadline.jpg)Living with epilepsy can be challenging. *[Studio E: The Epilepsy Art Therapy Program](http://www.yourpartnerinepilepsy.com/studio-e.aspx),* a partnership between Epilepsy Foundation and Lundbeck, has shown art therapy can improve self esteem in people living with epilepsy. Through this multi-week art therapy program, participants are given the opportunity to creatively express themselves and their emotions. The [Studio E](http://www.yourpartnerinepilepsy.com/studio-e.aspx) program offers weekly group art therapy sessions for adults, teens and children living with epilepsy. The participants work with licensed art therapists using a variety of artistic media, including painting, sketching and sculpting over several sessions. ### Explore your creative side “Through the creative process, art therapy provides people a non-verbal way to identify, communicate and work towards resolving conflicts and problems, and consequently to reduce stress, increase self-esteem and restore an internal locus of control,” said [Dr. Steven Schachter](http://www.cimit.org/), professor of neurology, Harvard Medical School and chief academic officer, Center for Integration of Medicine and Innovative Technology. ### Express yourself through art “There is a special place for art among people living with epilepsy who sometimes struggle with self-expression and connecting with others. Society’s tendency to stigmatize seizures can take a toll and impact self-esteem. I believe art therapy can help people work through these difficulties. That’s why I’m so passionate about Studio E,” said Lucy Vitko, Program Manager and Art Therapist, Epilepsy Foundation. ### Studio E Goals The epilepsy art therapy program aims to promote the following: - Artistic expression - Building autonomy - Art as empowerment - Emotional stability - Sense of self-worth - Connection with others Studio E is open to artists of all talent levels, whether you are a professional artist of have never held a paint brush. ### Participate in a Studio E event Learn more about *Studio E* and how to get involved via Lundbeck’s [web site](http://cp.mcafee.com/d/avndygw86Qm4QXIKcee6XCQQmhPMWWrMUSCyOeu7f3CkPqqb8VUttdVUSztxeWrPzBPvOGgzbU0Gpyl9GBpAundPciFdkHczOVJdR1VeP3_nV55VVBDHTbFICzBfASnTQnKmKzp5dmXzDaxVZicHs3jqpJATsTsSjDdqymokUZK213X5unNKClrynnlBdnUjNtlK4FByYE6qDCvl-4YblrynmScUv4La1vRF7-JgIr4vFilJaQlBcCej1h4jVsSYCeudwLQzh0bdOIld40ITZ9OH0SyYrGwAh1s97). ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Life With Epilepsy **Tags:** product review --- ### [Guardian Monitor Review: eased concerns about nocturnal seizures](https://livingwellwithepilepsy.com/life-with-epilepsy/guardian-monitor-review-eased-concerns-about-nocturnal-seizures.html) **Published:** July 2, 2015 **Author:** Emily Lawrence (Nee Donoghue) **Excerpt:** A few months ago Tony Bullars offered to send me one of his Guardian Monitor Night Alarms from the company ‘Alert-it’ to try for 2-3 months. **Content:** [![Guardian Monitor](http://livingwellwithepilepsy.com/wp-content/uploads/2015/06/Screen-Shot-2015-06-13-at-22.19.47-300x218.png "Guardian Monitor – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/06/Screen-Shot-2015-06-13-at-22.19.47.png)*Do you or does someone you love suffer from Nocturnal seizures in Epilepsy? If they do I may have found the perfect alarm for you. – Emily Donoghue* A few months ago Tony Bullars offered to send me one of his Guardian Monitor [Night Alarms](http://www.alert-it.co.uk/) from the company ‘Alert-it’ to try for 2-3 months. Alert-it are the UK’s foremost providers of Plesiocare within Assistive Technology. They make monitors and alarms that can reduce the stress of caring for individuals and help ease the anxiety for those who are living with a condition. Alert-it provides care systems for Epilepsy, Learning Difficulties, Autism, Dementia, Incontinence and those at risk of falls. #### Emily’s Perspective If you have [read about me before](http://livingwellwithepilepsy.com/author/emilyd), I am sure you will understand my [Epilepsy](http://livingwellwithepilepsy.com/epilepsy-101) and what happens to me on a day to day basis. With daytime seizures people notice them more and I am generally safer, but when night falls, detecting a seizure became more difficult and I always went to bed anxious. #### Nocturnal Seizures It can be tricky to diagnose nocturnal seizures because they occur during sleep, and you may not be aware of them. Also, nocturnal seizures can be confused with parasomnia, which is an umbrella term for a group of sleep disorders that include sleepwalking, teeth grinding, and restless leg syndrome. All of these thoughts added to the anxiety of my family, so we did some research on what we could do to prevent any dangers of having fits during the night. I had previously purchased a fall alarm from Alert-it a year or so ago and it saved my life. I will write about that if anyone is interested. #### The Monitor After contacting the company, Tony sent me a monitor, which helps to detect bed movement that is associated with epileptic seizures or spasms. Along with its movement detectors it has the additional capability to monitor shallow movements as a protection from SUDEP or Tonic or Partial type seizures. The Bed Movement detection uses a sensitive sensor which you place under the mattress. This sensor is used to analyze the size & frequency of movement during your sleep. #### The Alarm An alarm is raised if the movement indicates lack of normal movement or an increase in seizure movements. You can use a learning mode which allows the unit to record the normal movement activity overnight to establish the safe criteria, this stops the alarm going off with the slightest movement like rolling over or getting out of bed. #### The Sound Sensor The sound sensor detects sharp gasps or groans. The device doesn’t pick up background noise which is another pro, especially if you talk in your sleep or live in a noisy area. #### Bed Vacation Mode One thing I really found useful with this alarm is the ‘Bed Vacation’ mode. This can be set to give either an immediate alarm when the person leaves the bed, or only an alarm if the bed is vacant too long. This is helpful in cases where you collapse whilst going to the bathroom or fall out of bed. #### Heart Rate Matters I have an incredibly fast resting heart rate which is a common effect after, and during, a seizure. But, for me it is a daily thing, which can cause restlessness at night. If I lie on my front, my heart can literally beat through the mattress. It’s also very irregular which made it difficult to get the personalized settings set up on the monitor as every night was different. After trying this alarm throughout the working week we did notice that the alarm was going off due to my heart and frequent movement. However, it also detects the seizures, so we have full faith in this alarm. The alarm helps us know that we have answers out there, which can help my whole family relax and feel more at ease. If it wasn’t for my irregular heartbeat we could definitely use this monitor more! #### Volume The alarm is easy to use and we liked how you can even change the volume so it doesn’t wake you up so unpleasantly! #### In summary I had a great experience in receiving this alarm. We, as a family, would recommend this product to anyone requiring a bed alarm as it puts your mind totally at rest. I am getting help with my heart rate and have got the best support. Thank you team Alert-It. #### Disclaimer The alarm is an aid to those living with epilepsy and it is by no means a cure. This tool is not intended to replace medical care or attention by a qualified practitioner. If you are having health problems or need advice please contact your doctor. You can also read full details on our [policy on product reviews](http://livingwellwithepilepsy.com/privacy-and-disclosures). #### Have you ever used a seizure alarm? What was your experience? Let us know in the comments? ![author avatar](https://secure.gravatar.com/avatar/5523d28ae8bbaedc9d082d51d29393ca490379cd31464b99ab3c7d50a49362ac?s=300&d=mm&r=g) Emily Lawrence (Nee Donoghue) 25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England. Emily's Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10. Based in UK. [See Full Bio](https://livingwellwithepilepsy.com/author/emilyd) [ ](https://livingwellwithepilepsy.com/author/emilyd) **Categories:** Life With Epilepsy **Tags:** product review --- ### [My ID Square: A Review of Medical ID Squid Square](https://livingwellwithepilepsy.com/life-with-epilepsy/a-review-of-medical-id-squid-square.html) **Published:** October 25, 2015 **Author:** Emily Lawrence (Nee Donoghue) **Content:** [![squid id](http://livingwellwithepilepsy.com/wp-content/uploads/2015/10/squid-id-240x300.jpg "squid id – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/10/squid-id.jpg)A few weeks ago staff from **[My ID Square](http://www.myidsquare.com)** contacted me about the possibility of reviewing one of their medical ID bracelets-of course, I said yes! My ID Square makes “smart” medical IDs which connect to a powerful online medical profile and alert contacts in an emergency by using a QR code. After just a couple of days, my ID Square bracelet came in the post all the way from the States; I was so excited. #### QR Codes As you can see on my photo of my bracelet, those little printed boxes that are similar to barcodes, called quick response (QR) codes, contain lots of information only readable by special digital scanners or your smartphone. After you scan a QR code, your smartphone can present the information or perform a function, such as access a website. QR codes in the medical field are becoming increasingly popular with the wave of QR code usage, which is one of the reasons I was excited to review this product. We do not currently have this kind of Medical ID in the UK yet. Quick response codes provide a wide range of information that can easily be scanned and decoded using quick response software. Your smartphone may need an app, but it is free! You can download any QR reader app, but I use the [i.nigma](http://www.i-nigma.com/i-nigmahp.html). #### In An Emergency QR codes can help lead to important numbers such as helplines and hospitals. This can save a lot of time when you need help. Maybe you don’t have your emergency contact details accessible for someone, or you are dazed and cannot remember any of your information; you or somebody else can scan the QR code on your bracelet, necklace, or chain and your details will be sent to that persons phone. You can also visit the website for any emergencies that might arise; the URL is on the back of your squid. By having QR barcodes on medical IDs, the process of accessing your medical information is faster and easier during an emergency and when visiting the doctor. QR barcodes are often used in hospitals – on patient wristbands, medication bottles and supplies. As a result, medical personnel are familiar with QR barcodes and know how to scan them. #### Cost Squid Square: $35.00 USD The interchangeable bracelet and necklace attachments connect to your online medical information when the QR barcode is scanned with a mobile device or the URL printed on the back is accessed by any computer or mobile device. Your emergency contacts can even be alerted. #### My ID Square The squids are 100% waterproof, so you do not need to worry about taking them off to swim or bathe. There are so many designs to choose from and they are made to fit YOU. I’m so pleased with my squid, I don’t need to worry about people looking at me because I am wearing an Epilepsy alarm or an alert band because this design is discreet and you are able to buy extra charms to go on it to make it more personal to you. The staff were there for me during the arrival of my squid, ensuring that everything was working fine and offering me further support if there were any issues. I cannot fault the squid or the customer service I received. Thank you My ID Square! #### For More Information Where to find them: See more of what they have to offer: #### Disclaimer I received a free Squid Square from My ID Square in exchange for writing a review on the blog. However, all opinions are my own. The product described here is an aid to those living with epilepsy and it is by no means a cure. This tool is not intended to replace medical care or attention by a qualified practitioner. If you are having health problems or need advice please contact your doctor. You can also read full details on our [policy on product reviews](http://livingwellwithepilepsy.com/privacy-and-disclosures). #### Product Reviews If you have a product you would like the team at Living Well With Epilepsy to review, send us an email at . ![author avatar](https://secure.gravatar.com/avatar/5523d28ae8bbaedc9d082d51d29393ca490379cd31464b99ab3c7d50a49362ac?s=300&d=mm&r=g) Emily Lawrence (Nee Donoghue) 25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England. Emily's Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10. Based in UK. [See Full Bio](https://livingwellwithepilepsy.com/author/emilyd) [ ](https://livingwellwithepilepsy.com/author/emilyd) **Categories:** Life With Epilepsy **Tags:** Epilepsy in Everyday Life, living with epilepsy, medical id, My ID Square, product review --- ### [This Week in Epilepsy: May 10 2015](https://livingwellwithepilepsy.com/advocacy-awareness/events-initaitives/this-week-in-epilepsy-051015.html) **Published:** May 10, 2015 **Author:** Jessica K. Smith **Excerpt:** This was a busy week for Living Well With Epilepsy. I was invited to speak at the BIO International Convention, which is hosted by the Biotechnology Industry Organization (BIO). We've been preparing for our May #LivingWellChat on May 11. And, I was invited to judge the eHealthcare Leadership Awards again. These are all great opportunities to increase epilepsy awareness. **Content:** [![BIO CONVENTION LOGO_VERTICAL_NODATES_CMYK](http://livingwellwithepilepsy.com/wp-content/uploads/2015/05/BIO-CONVENTION-LOGO_VERTICAL_ND_RGB-273x300.jpg "BIO CONVENTION LOGO_VERTICAL_NODATES_CMYK – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/05/BIO-CONVENTION-LOGO_VERTICAL_ND_RGB-e1431292464564.jpg)This was a busy week for Living Well With Epilepsy. I was invited to speak at the BIO International Convention, which is hosted by the Biotechnology Industry Organization (BIO). We’ve been preparing for our May #LivingWellChat on May 11. And, I was invited to judge the eHealthcare Leadership Awards again. These are all great opportunities to increase [epilepsy awareness](http://livingwellwithepilepsy.com/epilepsy-101). #### What is BIO? BIO represents more than 1,100 biotechnology companies, academic institutions, state biotechnology centers and related organizations across the United States and in more than 30 other nations. [BIO](http://convention.bio.org/) members are involved in the research and development of innovative healthcare, agricultural, industrial and environmental biotechnology products. The 2014 convention attracted almost 16,000 attendees from thousands of organizations including leading biotech companies, top 25 pharma companies, top 20 CROs and CMOs, more than 300 academic institutions, including major research labs and government agencies, and the leading consultants and service companies. I’ll be presenting with the team from Self Care Catalysts who developed the [Epilepsy Storylines app](http://livingwellwithepilepsy.com/epilepsy-storylines). The event is scheduled for June 15-18, 2015 in Philadelphia. #### What is #LivingWellChat? Have you been curious about the Epilepsy Storylines app but would like to connect with other who are using it? This is your opportunity. Don’t let the whole [Twitter](twitter.com/jessicaksmith) thing scare you off. If you have never participated in a twitter chat check out our recent post which gives guidelines of how to join the chat. You can find the post on [\#LivingWellChat here](http://livingwellwithepilepsy.com/2015/epilepsy-storylines-app/may-2015-livingwellchat-on-using-epilepsy-storylines.html). #### What are the eHealthcare Leadership Awards? This awards program, now in it’s 16th year, recognizes the best websites and digital communications of healthcare organizations (both large and small), online health companies, pharmaceutical/medical equipment firms, suppliers, and business improvement initiatives. “Organizations have made major improvements in their websites, expanded use of social media, and are employing mobile applications to engage current and prospective customers and enhance quality and operational efficiency,” said Mark Gothberg, [eHealthcare Leadership Awards](http://www.strategichealthcare.com/ehealthcare-leadership-awards) chairman. The awards serve to recognize the important role an organization’s web and digital presence can have on achieving business objectives. #### Your news We want to hear what you are up to. Be sure to let us know in the comments below. And thanks for checking in! ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Events and Initiatives --- ### [Sandra's Story: I have epilepsy, epilepsy doesn't have me](https://livingwellwithepilepsy.com/epilepsy-stories/sandras-story-epilepsy-epilepsy-doesnt.html) **Published:** January 22, 2014 **Author:** Guest Contributor **Excerpt:** I realize that I am lucky because I have read stories of people and how they struggle with epilepsy. I ask myself, should I be struggling? Should I be worried all the time? But, then I stop and tell myself, NO! This is MY life and MY epilepsy story. **Content:** [![june 2011 001](http://livingwellwithepilepsy.com/wp-content/uploads/2014/01/june-2011-001-225x300.jpg "june 2011 001 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/01/june-2011-001.jpg)*Sandra’s [personal epilepsy story was submitted](http://livingwellwithepilepsy.com/share-your-epilepsy-experience) to Living Well With Epilepsy to paint a picture of someone who has epilepsy, but epilepsy doesn’t have her.* ## Sandra’s Story I was diagnosed with Petit Mal Epilepsy or Absence Epilepsy, whichever is the preferred term now, when I was 8 years old. I’ll be 40 in 6 months. I started having Grand Mal Seizures October 2010, when I had 2 on the same day, then I didn’t have any until February 10, 2013 when I had one and then again Thanksgiving 2013 when I had 2. Here’s my story from the time I was diagnosed to now. I don’t “feel” different from anyone else. In fact, most people would say, my life is better than most. I guess, I’m lucky in that respect. ## College My parents didn’t treat me any different because of epilepsy. They treated it and pushed me to live my life to the fullest. I was a normal kid in school who did well academically and excelled in high school sports. I went on to college where I earned two bachelor degrees and a master’s. During college, I did the normal college stuff, studied, stayed up way too late and did my fair share of partying. ## Running After college, I started my career as a school teacher, which I am still currently doing. In the meantime, I travelled. Oh, boy, have I travelled. I also became a runner in my 30’s, which I NEVER imagined myself becoming, EVER. I have done a marathon, about a dozen half marathons, countless 5k’s. The first thing I always ask my neurologist when I have had a grand mal seizure is when can I start running again. ## Dating and Driving I have dated and been in a long term relationship. When I “feel” like I have epilepsy is when my driving privileges are taken away after having a grand mal seizure, when I have to stay at my parents’ house for a month or two because I live alone and they get concerned with me living alone, when for a month or two I have doctors appointment like crazy and I’m getting poked and prodded. Then, slowly, life settles and it’s back to MY life. The driving privileges get restored, I go back to living on my own, I go back to work and I’m back to a quicker pace when running. ## Life goes on I realize that I am lucky because I have read stories of people and how they struggle with epilepsy. I ask myself, should I be struggling? Should I be worried all the time? But, then I stop and tell myself, NO! This is MY life and MY epilepsy story. > I have epilepsy, epilepsy doesn’t have me. Sometimes, I just have some bumps and potholes on the road of life, the grand mal seizures, that have to be repaired by the road crew, my neurologist and other doctors, but life, as I have always known, it goes on. ### To submit your story visit: ![author avatar](https://secure.gravatar.com/avatar/fd0bb7f70dae0d32bba41df0f83ba02997c737c233d9b2760c630f584335eabe?s=300&d=mm&r=g) Guest Contributor [See Full Bio](https://livingwellwithepilepsy.com/author/infocontributor) [ ](https://livingwellwithepilepsy.com/author/infocontributor) **Categories:** Epilepsy Stories **Tags:** epilepsy blog, epilepsy story, Living Well With Epilepsy, Personal Stories, personal story --- ### [What does one day of treatment look like?](https://livingwellwithepilepsy.com/advocacy-awareness/events-initaitives/one-day-treatment-look-like.html) **Published:** January 26, 2014 **Author:** Jessica K. Smith **Content:** ## [![20140116-213420.jpg](http://livingwellwithepilepsy.com/wp-content/uploads/2014/01/20140116-213420-150x150.jpg "20140116-213420.jpg – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/01/20140116-213420.jpg)Pictures speak louder than words Epilepsy is often an invisible condition. However, the methods used to treat epilepsy are not. I recently heard about a site which showcases photos of the prayer spaces used by Muslim women. This gave me an idea. ## A gallery of treatment I’d like to create a gallery of images showing how you treat your epileps for one day. I’d like these images to illustrate the diversity and quantity of medicine/food/vitamins/electricity it takes each of us, every day to treat epilepsy. ## A few ideas Your picture may be: - A handful of meds - A VNS scar and magnet - A countertop full of food - A scar from a brain surgery - You meditating or doing yoga I have something like this in mind. So as you can imagine, the project will need lots of pictures! [![Screen Shot 2014-01-18 at 1.49.27 PM](http://livingwellwithepilepsy.com/wp-content/uploads/2014/01/Screen-Shot-2014-01-18-at-1.49.27-PM-300x106.png "Screen Shot 2014-01-18 at 1.49.27 PM – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/01/Screen-Shot-2014-01-18-at-1.49.27-PM.png) I think you get the idea. If you are interested in participating, use the form below to send in pictures of one day of treatment along with a caption or note. ## Calling Epilepsy Organizations Epilepsy affiliates and other epilepsy awareness organizations are welcome to submit photos on behalf of their members. We would like to recognize each organization that submits so please include the name of your organization, include an email and a logo. ## Submit your pic **Be sure your picture:** - Shows your treatment - Is a large or high resolution picture (from your phone is fine) - Includes a caption describing the treatment. - Includes the type of seizures you have. - Includes country you are from - If in US include the state. - If you previously submitted a personal story and it is live on the site include the link **You don’t have to:** - Show your face - Give your name - Provide personal details **A few suggestions:** - Send photos in focus - Send big or high resolution pics - Send as many pics as you want ## Deadline to Submit: March 1 \[jotform id=”40595313073148″\] ## Spread the word This could turn into a really amazing project so spread the word. I would like to have this up by Purple Day. I think together we can accomplish this goal! ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Events and Initiatives --- ### [Write for Living Well With Epilepsy](https://livingwellwithepilepsy.com/aboutus-lwwe/write-for-living-well-with-epilepsy-3.html) **Published:** January 2, 2015 **Author:** Jessica K. Smith **Excerpt:** Has your life been affected by epilepsy in some way? When you write for Living Well With Epilepsy you share your story with readers around the world. **Content:** [![write for living well with epilepsy](http://livingwellwithepilepsy.com/wp-content/uploads/2015/01/write-for-living-well-with-epilepsy1-e1420169570711-300x218.png "write for living well with epilepsy – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/01/write-for-living-well-with-epilepsy1-e1420169570711.png)Has your life been affected by epilepsy in some way? When you write for Living Well With Epilepsy you share your story with readers around the world. You might be surprised by how your life experience can inspire others. ### Your Perspective You may have read [Emily’s great column](http://livingwellwithepilepsy.com/2014/emilys-perspective/emilys-perspective-deal-seizure.html "Emily’s Perspective: How to deal with a seizure") on her life with epilepsy. Of course, each person’s experience with epilepsy is unique but you may have learned a few tips and tricks along the way that are worth sharing. ### Just a few suggestions Here are just a few suggestions of what we are looking for: - Are you a teen living with epilepsy - Are you a Mom living with epilepsy - Are you a Mom or a Dad caring for child with epilepsy - Does a friend of yours with epilepsy - Nutritionist with knowledge of Ketogenic Diet - Have you had a successful career despite your epilepsy? - Have you traveled despite your epilepsy? - Do you manage an organization that serves the epilepsy community? - Are you a pharmacist that serves the epilepsy community? - Are you a doc who has time to write for a blog? Of course this list could go on and on. If you are interested in writing about your perspective let us know. ### What we’re looking for The best way to know what interests us (and our readers) is to take a look at the [Top Posts and Pages](http://livingwellwithepilepsy.com/blog) in the sidebar. Most of these articles have some personal story element to them. But these stories are not completely self-serving. In other words, the reader takes something from reading the story. We also ask for articles between 500-600 words. ### What to send us If you are interested you don’t need to send the whole story right away. Just send a few topics you might want to write about and why you are the best person to write on the subject. Send your ideas to us via e-mail to . ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** About Us **Tags:** Submissions, Write --- ### [How are you celebrating Epilepsy Awareness Month?](https://livingwellwithepilepsy.com/life-with-epilepsy/celebrating-epilepsy-awareness-month.html) **Published:** October 27, 2014 **Author:** Jessica K. Smith **Excerpt:** If you are doing something for epilepsy awareness month and want to get the word out, let us know. **Content:** [![](http://livingwellwithepilepsy.com/wp-content/uploads/2014/08/epilepsy-november_200x1.jpg "– Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/08/epilepsy-november_200x1.jpg)We reached out to a few of our friends and asked what they are doing to celebrate epilepsy awareness month this year. Over the course of the month you will hear about great events and amazing bloggers that are shaking things up in their own unique way. ### Want to get the word out? If you are doing something for epilepsy awareness month and want to get the word out, let us know. We’d love to tell the community about all the amazing things you are doing to raise epilepsy awareness. ### Featured Affiliate: Epilepsy Foundation of Eastern PA We are kicking things off a bit early with our Featured Affiliate: the Epilepsy Foundation of Eastern PA. This group isn’t pulling any punches. they are addressing the Medical Marijuana issue head-on with experts from CHOP and Great Valley Neurologic Associates. ### EFEPA hosts an Epilepsy Education Exchange #### [![EFEPA](http://livingwellwithepilepsy.com/wp-content/uploads/2014/10/EFEPA-300x150.jpg "EFEPA – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/10/EFEPA.jpg)November 1, 2014 | FREE The Epilepsy Education Exchange is a free educational conference for individuals impacted by epilepsy as well as health care professionals. The program is scheduled for November 1, 2014 from 9:00 am – 1:00 pm at the ACE Conference Center in Lafayette Hill, PA. This program is open to the public and provides the latest information on treatment options, research, self-care, managing one’s diagnosis and providing self-care. This year’s keynote session is “Weeding out the Truth: Medical Marijuana & Epilepsy,” presented by Dr. Eric Marsh from the Children’s Hospital of Philadelphia and Dr. Joyce Liporace from the Great Valley Neurologic Associates. Additional workshops include “Caregiver Stress,” “New Treatment Devices and Clinical Trials,” “Headaches & Epilepsy,” and “What the Medical Marijuana Hub-Bub Tells us about Present and Future Epilepsy Treatments.” Attendees can register online at [www.epilepsyexchange.org](http://www.epilepsyexchange.org). If you have questions don’t hesitate to contact Sue Livingston at or 215-629-5003. ### Register Today Register for the Epilepsy Education Exchange at [www.epilepsyexchange.org](http://www.epilepsyexchange.org). ### Showcase your work! If you are interested in becoming a Featured Affiliate, or showcasing your work in the epilepsy community drop us a line at . ### Add the button And don’t forget to add the epilepsy awareness button to your site or profile this month! ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Life With Epilepsy **Tags:** EFEPA, Featured Affiliate, November --- ### [Raise epilepsy awareness like a superstar](https://livingwellwithepilepsy.com/life-with-epilepsy/epilepsy-awareness-superstar.html) **Published:** November 10, 2014 **Author:** Jessica K. Smith **Excerpt:** Check out these epilepsy awareness superstars. They are making a difference for women, children and teens living with epilepsy, each in their own way. **Content:** [![EFA walk](http://livingwellwithepilepsy.com/wp-content/uploads/2014/10/EFA-walk-300x225.jpg "EFA walk – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/10/EFA-walk.jpg)Check out these three epilepsy awareness superstars. They are making a difference for women, children and teens living with epilepsy, each in their own unique way. ### Wonder Women More than 1 million women in the U.S. have epilepsy. Unfortunately, many are unaware that they face issues exclusive to their female bodies. These issues are in relation to seizure frequency and anti-epileptic drug effects on hormones, birth control, pregnancy, bone health, psychiatric diagnoses, and other co-morbidities. #### Alexis and Eliana of Wonder Women: Alexis and Eliana, two young women with epilepsy, have come together to create WONDER WOMEN: Empowered Women with Epilepsy. Their mission is to create a community that empowers women of all ages living with epilepsy through education, advocacy, and the opportunity to share experiences. [![wonderwomen](http://livingwellwithepilepsy.com/wp-content/uploads/2014/11/wonderwomen.png "wonderwomen – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/11/wonderwomen.png) [Visit Wonder Women ](http://facebook.com/wwepilepsy) --- ### [![kate](http://livingwellwithepilepsy.com/wp-content/uploads/2014/11/kate-199x300.jpg "kate – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/11/kate.jpg)Fits+Starts EXCERPT: “People constantly tell me that they are praying for a miracle for Virginia. I know they mean well. But I think when we’re waiting for miracles, we’re often missing the everyday miraculous that already surrounds us Don’t get me wrong, a cure would be great. Seriously, Jesus. Awesome. Bring it on. But praying for a cure, waiting for a simple solution, can make us myopic. We focus on what needs fixing instead of what’s already working; what we lack, instead of what we have.” [Read More](http://katenealecooper.com/2014/04/07/curing-caring-my-messy-beautiful/) #### Kate Neale Cooper of Fits+Starts: Kate Neale Cooper is a freelance writer and editor and the mother of three children. Her daughter, Virginia, age 11, has had epilepsy for 10 years and suffered more than 10,000 seizures. Kate says she has approached epilepsy the way she approaches many things in life that bother her: in fits and starts, which is how she came up with the name for her blog. Her hope for the blog is that it helps her—and others—find some equilibrium in this struggle. Her hope is that despite all the fits, Virginia’s life can be full of starts. #### [![fitsandstarts](http://livingwellwithepilepsy.com/wp-content/uploads/2014/10/fitsandstarts-300x37.jpg "fitsandstarts – Living Well With Epilepsy")](http://katenealecooper.com/2014/04/07/curing-caring-my-messy-beautiful/) [Visit Fits+Starts ](http://katenealecooper.com/blog/) --- ### [![catie](http://livingwellwithepilepsy.com/wp-content/uploads/2014/11/catie.jpg "catie – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/11/catie.jpg)Epilepsy Awareness Squad EXCERPT: “My name is Jen Annett. I am a wife, a mother, a professional triathlete, an employee, and I have epilepsy. I started having simple partial seizures (also known as Auras) after I got hit by a car in 2008 while I was on my bike, training for the Ironman World Championships in Hawaii. I continued to have these “spells,” which went undiagnosed, for 2 years. The doctors just kept brushing these “feelings” off as electrolyte imbalances from my training. I continued to race triathlon and Ironman, and it wasn’t until December of 2010 that I had my first Grand Mal Seizure.” [Read More](http://easquad.org/2014/09/10/jens-story/) #### Catie and Dan of the Epilepsy Awareness Squad: The Epilepsy Awareness Squad was created in June of 2013 by Caitie Shaw and Dan Nixon after Caitie spent a week in BC Children’s Hospital for her Epilepsy. We felt there was a need to increase awareness of the disorder and combat the stigma often associated with it. As a youth initiative, we are determined to decrease the stigma and rumors surrounding Epilepsy. We do this through educational and outreach initiatives. We offer presentations to schools, participate in community events and host various fundraising activities in our community. We also maintain an active online presence. #### [![EAS Logo](http://livingwellwithepilepsy.com/wp-content/uploads/2014/10/EAS-Logo-300x225.jpg "EAS Logo – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/10/EAS-Logo.jpg) [Visit Epilepsy Awareness Squad ](http://easquad.org) Check back for more featured epilepsy awareness superstars! ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Life With Epilepsy --- ### [Ask an Epileptic: A new column](https://livingwellwithepilepsy.com/life-with-epilepsy/ask-an-epileptic-intro.html) **Published:** July 25, 2013 **Author:** Jessica K. Smith **Content:** ### [![Questions](http://livingwellwithepilepsy.com/wp-content/uploads/2013/07/colorful_question_mark-150x150.jpg "– Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2013/07/colorful_question_mark-e1374796047325.jpg)Need some answers on what it’s like living with epilepsy? Why not ask an epileptic? Listening to NPR the other day, I heard the journalist Gustavo Arellano mention his nationally syndicated column, “[¡Ask a Mexican!.](http://www.askamexican.net)” This is Arellano’s forum to answer any and all questions about America’s spiciest and largest minority (his words, not mine). Now I’m not Mexican, but the title of the column got me thinking. I wondered if there was anything like an “**Ask an Epileptic**” column out there. I did a few searches and wasn’t surprised to find that no one had taken this on. Then, I thought the word “epileptic” might really annoy some people. But I figured if people actually read the questions and answers then it is worth annoying some to help many. ## Ask an Epileptic[![Image-1](http://livingwellwithepilepsy.com/wp-content/uploads/2012/11/Image-1-150x150.jpg "Image-1 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2012/11/Image-1.jpg) As I move through life I spend more time that you can imagine (well, maybe YOU can imagine) explaining to people the basic facts about epilepsy. The interaction is most often positive and I generally walk away thinking, “Wow, wouldn’t it be great to find a way to replicate these one to one situations on a larger scale.” I’d like more people to get the message faster. So, as I continued my drive home (yep I drive), I wondered if this might be the solution. “Ask an Epileptic,” could be a way to reach many people with the same or similar question quickly. ## Call for Questions Okay, so here goes. You can submit questions on [facebook](https://www.facebook.com/livingwellwithepilepsy) and [twitter](https://twitter.com/jessicaksmith). You can comment below or you can use the form here. - If you have a question you want to ask now, just comment below. - If you have epilepsy and want to submit a question you are asked all the time – go ahead. - If there is one myth that you come across all the time submit it. (as a question) - If you have always wondered… submit it. You get how this works. I will gather up questions from the form below, comments, twitter and facebook. The deadline to submit questions in this round is July 31 at Noon ET. \[contact-form to=’info@livingwellwithepilepsy.com’ subject=’Ask an Epileptic’\]\[contact-field label=’Name’ type=’name’ required=’1’/\]\[contact-field label=’Email’ type=’email’ required=’1’/\]\[contact-field label=’Your question’ type=’textarea’/\]\[/contact-form\] ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Life With Epilepsy --- ### [Do generic meds differ from one manufacturer to another?](https://livingwellwithepilepsy.com/life-with-epilepsy/generic-meds.html) **Published:** August 1, 2013 **Author:** Jessica K. Smith **Content:** ## **Ask an Epileptic:** “Do generic meds cause different side effects when they are from a different manufacturer?” **[![pills](http://livingwellwithepilepsy.com/wp-content/uploads/2013/08/pills1-150x150.jpg "– Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2013/08/pills1.jpg)DEAR EPILEPTIC: I have epilepsy and wonder if anyone who receives medication by mail ever receives their meds from a different generic manufacturer. This time my generic Lamictal came in a different shape and size. I was told it was because it came from a different manufacturer. This makes me feel uncomfortable because the medication makes me feel a little differently. I get used to the side effects I guess or I am told it could be from other things like food or PMS or my imagination.** **– Donna** DEAR DONNA: It’s funny you should ask. Recently I went to my regular pharmacy and ordered my regular prescription refills. But, when the prescriptions were filled I was handed bottles of pills I did not recognize. I asked about the pills, you know, just to make sure they were the correct medication. I was told they filled the prescription with a different generic manufacturer. I was not happy, but I took the medication home and the next morning began taking it according to my regular dose (which is also what it said on the bottle). That morning I began to experience some odd and uncomfortable physical symptoms. First, I thought maybe the dose was too low. Then, I thought maybe it’s too high. I finally gave up, and left work at lunchtime, and went home to figure out what was happening. When I got home I decided to eat something before I took any more medication. After the first bite of some high fat yogurt, I began to feel better. I thought, “this is really weird.” So I continued to eat, and drink water, until the burning throughout my entire torso subsided. I went back to work and dreaded taking the next dose. So, on my way home from work I stopped back at the pharmacy and let them know what was going on. I spoke directly to the pharmacy manager. I asked if it was possible to refill my prescription with the generic I normally use. Thankfully she was willing to do that for me. It took another few days to get the proper medication in stock, which meant I had to continue taking the generic that was causing me to feel like I was burning from the inside out. Not fun. When the proper meds came in the pharmacy switched out the prescriptions. I asked the pharmacy to make a note in my record that I MUST have a specific manufacturer for that medication. They were willing to make the note in my record. I have not had the same problem since. I must say though, it did take almost a full month to completely recover from the three or four days I was on that medication. It took that long for the burning feeling to completely subside. So to answer your question, I suppose what you are experiencing could be from PMS, or it could be your imagination, but it could also be because your pharmacy switched to a new generic manufacturer. Have a conversation with your pharmacist it could make you a lot more comfortable. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Life With Epilepsy --- ### [Ever realize how annoying the word Epileptic is?](https://livingwellwithepilepsy.com/life-with-epilepsy/ask-an-epileptic-2.html) **Published:** August 8, 2013 **Author:** Jessica K. Smith **Content:** ## **Ask an Epileptic:** “I’ve wondered if you realize how annoying it is to be called epileptic?” [![](http://livingwellwithepilepsy.com/wp-content/uploads/2013/08/310216906_9a4822502b-150x150.jpg "310216906_9a4822502b – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2013/08/310216906_9a4822502b.jpg)Photo by [ooki op](http://www.flickr.com/photos/olga_pozdina/with/310216906/)**DEAR EPILEPTIC: The word “Epileptic” is annoying to some of us who do suffer from epilepsy! There are other ways to get the word out. I’ve done so myself by telling my own story. I was misdiagnosed originally and as a result, suffered 2nd and 3rd degree burns while coming out of the shower. This was my first big time Tonic/Clonic seizure. And after being in the hospitalfor two months and undergoing multiple tests and surgeries, I was finally diagnosed with epilepsy. I have complex partial seizures with secondary generalized tonic/clonic seizures. I’ve had brain surgery, tried numerous medications, and now have the VNS to control my seizures.** **It has been hard enough to deal with the stigma plus depression that goes along with Temporal Lobe Epilepsy. I’ve wondered if you realize how annoying it is to to some of us on the “inside” to hear the word ‘epileptic’? I am a person who happens to suffer from epilepsy.** **– Cindy** DEAR CINDY: I’m sorry the name of the column annoys you – really. I am also a person who lives with epilepsy, but I wanted to find a way to reach as many people in as short amount of time as possible. I was also hoping for a vehicle that had “legs,” so to speak. I needed a vehicle that could not only get the word out about epilepsy, but that could grow and continue to have a broader impact. My career in marketing has proven that catchy headlines work. Through Living Well With Epilepsy I’ve seen the positive impact personal stories have on readers, both newly diagnosed and those who have been living with epilepsy for years. I’ve also seen the importance of establishing a community – even a virtual one. But I was hoping for a broader reach. I wanted to get the message out to people who don’t know anything about epilepsy. In my [intro to the column](http://livingwellwithepilepsy.com/2013/07/ask-an-epileptic-intro.html) I touched on the fact that the term “epileptic” is not ideal to many people living with epilepsy. Here’s what I wrote: > Listening to NPR the other day, I heard the journalist Gustavo Arellano mention his nationally syndicated column, “[¡Ask a Mexican!.](http://www.askamexican.net)” This is Arellano’s forum to answer any and all questions about America’s spiciest and largest minority (his words, not mine). Now I’m not Mexican, but the title of the column got me thinking. I wondered if there was anything like an “**Ask an Epileptic**” column out there. > > I did a few searches and wasn’t surprised to find that no one had taken this on. Then, I thought the word “epileptic” might really annoy some people. But I figured if people actually read the questions and answers then it is worth annoying some to help many. I do apologize for annoying you. I hope you will hang in there while we give this a try to increase awareness about the devastation caused by epilepsy to millions of people around the world. ## Call for Questions You can submit questions for the next Ask an Epileptic until **August 14 at Noon ET** on [facebook](https://www.facebook.com/livingwellwithepilepsy) and [twitter, ](https://twitter.com/jessicaksmith)comment below, or you can use the form here. - If you have a question you want to ask now, just comment below. - If you have epilepsy and want to submit a question you are asked all the time – go ahead. - If there is one myth that you come across all the time submit it. (as a question) - If you have always wondered… submit it. You get how this works. I will gather up questions from the form below, comments, twitter and facebook. The deadline to submit questions in this round is **August 14 at Noon ET**. \[contact-form to=’info@livingwellwithepilepsy.com’ subject=’Ask an Epileptic’\]\[contact-field label=’Name’ type=’name’ required=’1’/\]\[contact-field label=’Email’ type=’email’ required=’1’/\]\[contact-field label=’Your question’ type=’textarea’/\]\[/contact-form\] ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Life With Epilepsy --- ### [Medical ID Bracelets: Where do you stand on the issue?](https://livingwellwithepilepsy.com/epilepsy-stories/leilas-ideas/medical-id-bracelets-where-do-you-stand-on-the-issue.html) **Published:** May 13, 2015 **Author:** Leila Shields **Excerpt:** How many of you wear medical ID bracelets? Do you know someone who wears one? How long did it take to wear one? For me, it took quite a few years. **Content:** *[![20150502_174341](http://livingwellwithepilepsy.com/wp-content/uploads/2015/05/20150502_174341.jpg "20150502_174341 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/05/20150502_174341.jpg)*Here’s a question for you: How many of you wear medical identification (ID) bracelets? Or, do you know someone who wears one? How long did it take you to finally put one on? For me, it took quite a few years. #### Medical ID Bracelet My parents knew the importance of having (and wearing) a medical ID that stated my information in case of emergency. This was explained to me, of course, but to a child who is trying to navigate peer relationships and keep a low profile on the Epilepsy diagnosis, wearing a medical ID seemed like a horrible idea. My ID, at the time, was a silver chain that hung around my neck with a silver and red ID tag. It didn’t blend in with my clothes and certainly wasn’t going to get me any best dressed award. I thought that if people saw me wearing one, they would automatically think I was sick. My peers would assume that I had something wrong with me and be repelled. My teachers would view me differently; maybe they would coddle me or think I wasn’t capable of functioning. To me, the medical ID served as a label– a negative label. The good news: Any time I had a medical event, someone who knew me and my background was around to inform others. The bad news: this only reinforced my lack of desire to wear the ID. #### Safety with Style At some point, the medical ID community began developing more stylish bracelets. [MedicAlert](http://www.medicalert.org/product/catalog/medical-ids) provided me with my first unique bracelet, just in time for middle school: a blue, braided, yarn-like bracelet that blended with most of my outfits and hid the ID on the underside of my wrist. Eventually, my family discovered even more stylish bracelets. [Lauren’s Hope](http://www.laurenshope.com/) is my current favorite site for ID bracelets. Since my mom discovered this company, I have not stopped wearing my bracelets. #### Making A Statement Once I had a new bracelet, the stigma seemed to be gone. I started wearing my ID because I believed I could now be viewed as a “normal” human being. I was a person that didn’t draw attention to myself through a disability, but rather through my abilities. It was (and still is) an empowering experience. What has also happened, is a discussion about my medical ID. When I was growing up, there wasn’t much attention drawn to it. The ID was a bracelet I wore; my peers weren’t that interested in it. Now, I have a few more interchangeable bracelets and I use them to match with outfits, making them a statement piece on my arm. I receive compliments on them and people ask me where I got them. I am proud to say that they are a medical ID, because a conversation is then started. A medical bracelet is no longer a label, but it is a statement: that I am an individual, I am unique, I have likes and dislikes, and I happen to have Epilepsy. So, if you don’t wear a medical ID or are unsure about it, I encourage you to wear it. You are not your diagnosis, but your diagnosis is a part of you. You have the power to affect how that impacts your life. *\*All opinions expressed about companies mentioned in this blog are completely my own. I received no reimbursement or compensation for my writing or opinion. I just really like sharing good ideas!* You’ve read my opinion on medical ID bracelets. Now take the poll to share where you stand on the issue: \[socialpoll id=”2271176″\] ![author avatar](https://secure.gravatar.com/avatar/4cebf381fbce646cb0dbabef2348282b941c67524a3f03f08d6e328fa6c976cb?s=300&d=mm&r=g) Leila Shields Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania. [See Full Bio](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/leila.zorzie) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://lzorzie) **Categories:** Leila's Ideas, Life With Epilepsy **Tags:** epilepsy stigma, Epilepsy Tech --- ### [Blog Relay to mark Epilepsy Stigma Awareness Month](https://livingwellwithepilepsy.com/epilepsy-blog-relay/blog-relay-to-mark-epilepsy-stigma-awareness-month.html) **Published:** May 19, 2015 **Author:** Jessica K. Smith **Content:** ### [![AMBASSADOR(1)](http://livingwellwithepilepsy.com/wp-content/uploads/2015/05/AMBASSADOR1-300x300.png "AMBASSADOR(1) – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/05/AMBASSADOR1-e1432333423170.png)Epilepsy Stigma Awareness Month For the past few years, Living Well With Epilepsy has dedicated June as Epilepsy Stigma Awareness Month. This year we are getting the epilepsy community involved through a blog relay. For this to succeed we will need 30 bloggers/advocates/family foundations/epilepsy affiliates who are willing to post ONE day in June on the topic of epilepsy stigma. That’s it, just one post. ### Who can participate? There’s no limit to who can participate. Your site can be a personal blog, a family foundation, a research project, an epilepsy affiliate or more.Your post can be a personal story, an interview, information on an event, just make sure it relates back to epilepsy stigma. Then you need to include a link to the next post in the relay. That’s it. In less than 24 hours of outreach we had commitments from 5 groups and had an overwhelming response on Facebook. Don’t miss your opportunity. ### Important Details Start by [confirming your participation](https://docs.google.com/forms/d/1ghqiz6mgxUw7odVJuLduRx043vxerbmen1-cr_eJr1g/viewform?c=0&w=1) so we can recognize your efforts. Then, write one post during the month of June on the topic of Epilepsy Stigma. Finally, link to the next day’s blog in the relay. Seriously, it’s that easy. I also encourage you to comment on the blog posts that inspire you. [Participate ](https://docs.google.com/forms/d/1ghqiz6mgxUw7odVJuLduRx043vxerbmen1-cr_eJr1g/viewform?c=0&w=1) ### How will I know which day I need to post? When you confirm your participation you will be asked to identify your three top choice dates. We will try to schedule everyone on a day they want to post. If we have more than 30 people interested in participating we can have multiple people on one day. If not then it is first come first serve. ### What do bloggers get? Since Living Well With Epilepsy is an all volunteer operation, you will get the following: - Increased traffic to your site - Increased awareness on a topic you care about - Some tools to make it easier to connect with other bloggers ## Will You Blog on Epilepsy Stigma in June? [Participate ](https://docs.google.com/forms/d/1ghqiz6mgxUw7odVJuLduRx043vxerbmen1-cr_eJr1g/viewform?c=0&w=1) #### Don’t want to blog, but want to participate? - Encourage your favorite blog to join the relay - Ask your local epilepsy affiliate to join the relay - Contact your local media outlet about the effort - Comment on posts that inspire you during the relay ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Blog Relay **Tags:** blog relay, Epilepsy Blog Relay, epilepsy stigma --- ### [Leila's Ideas: Remembering 7th Grade Stigma](https://livingwellwithepilepsy.com/epilepsy-stories/leilas-ideas/leilas-ideas-remembering-stigma.html) **Published:** January 14, 2016 **Author:** Leila Shields **Excerpt:** Growing up with Epilepsy means growing up with stigma. In one of my earliest memories of stigma, I learned a valuable lesson. **Content:** ![Beating stigma by competing in a bike race in 7th grade.](http://livingwellwithepilepsy.com/wp-content/uploads/2016/01/0012-178x300.jpg "0012 – Living Well With Epilepsy")*Beating stigma by competing in a bike race in 7th grade*One of my very first memories of [stigma](http://livingwellwithepilepsy.com/2015/leilas-ideas/epilepsy-stigma-why-leila-is-tackling-this-obstacle-in-her-own-way.html) occurred in 7th grade. I remember this day so clearly, which is surprising given the memory deficits my brain holds. Every school quarter, each student had to give a research-based presentation in our science class. One quarter, I was given the green light to speak about Epilepsy. This was a big deal; [researching](http://livingwellwithepilepsy.com/epilepsy-clinical-trials) and presenting a topic that none of my classmates had done and one that was so personal left me feeling excited and nervous. I was extremely worried, though, that someone would ask if I had it. Let me note very quickly: it is, to date, one of the best presentations I have ever done. Aside from the exciting animations and magical clip art, it was a blast to research and included really relevant information for both me and my classmates. This project convinced me that grades 7/8 are good times to talk about Epilepsy with students. But then came the end and the two words that mark the end of every middle school presentation: any questions? My mom came to watch and support me, for which I am still extremely grateful. She answered a few questions at the end that I was unsure of and smiled in approval the whole time. #### The Truth Comes Out Of course there were questions. “Did Julius Caesar really have Epilepsy” was a good one. (Fun fact: yes, he did). I’m sure there were a few others I don’t remember. One big one sticks out. The dreaded question. One I had rehearsed answering with my family but had mixed feelings about answering when actually presented with it. It was asked by a boy sitting in the middle of the classroom. He asked: Do you know anyone who has Epilepsy? I debated answering this in two ways: I could simply say that yes, I did in fact know someone with it or I could reveal my diagnosis to my classmates. Knowing what would ultimately make me stronger, I chose the latter option. I told my classmates about my Epilepsy. Shockingly, **my worst nightmares** about the moments after that answer **didn’t come true**. No one dropped their jaws to the floor. No one screamed with horror. My classmates actually became more interested, asking more questions about seizures and my own experiences. It was incredibly empowering. #### Stigma Sticks I hope this story makes you feel warm and fuzzy. It should; my classmates were so kind and caring. But, what I didn’t reveal in this retelling is the *immediate stigma* that my classmates applied when I revealed my diagnosis. I had just given a presentation on Epilepsy including information on what it is, how it may affect individuals, that all people are not impacted in the same way, etc. Yet, the moment I said “yes”, that knowledge went out the window. One question I remember getting is “you have seizures…so can you not swim?” At the time, I answered it and reiterated that not everyone is affected in the same way. Looking back, I see how stigmatized that question is. There is a stigma that individuals with epilepsy cannot do a number of different activities, one of them being swimming. The student who asked was probably wondering if I fit that mold. She should have known, from many instances, that swimming was an activity I participated in (with proper supervision). We both had to jump off of diving blocks in the deep end in elementary school and we both attended pool parties with friends. Not to mention I had just presented on seizures. But as soon as *she saw Epilepsy in the flesh*, it meant that *all* *of her stigma applied*. What mattered was that the perception of me was now altered and the facts needed separated from the lies. I’d love to say that through that presentation, [stigma](http://livingwellwithepilepsy.com/dealing-with-stigma) was eliminated in my peers and I lived a smooth life afterwards. I can’t say that though; I still encountered stigma among peers and even some teachers. Stigma isn’t that easy to get rid of. One lesson isn’t always enough to eliminate false perceptions that are embedded in a person’s mind. *It’s a start, but it isn’t the end.* This is why it’s important for us to keep [educating](http://livingwellwithepilepsy.com/2015/emilys-perspective/emilys-perspective-facts-and-myths-about-epilepsy.html) others. Continue to spread accurate information-both good and bad-about Epilepsy, seizures, and what it means for anyone impacted by it. Make it fun, make it repetitive, make it continuous; no matter how you do it, **make it known.** #### What’s your stigma experience? I’d love to hear how you have dealt with stigma; please share your experiences in the comments below! ![author avatar](https://secure.gravatar.com/avatar/4cebf381fbce646cb0dbabef2348282b941c67524a3f03f08d6e328fa6c976cb?s=300&d=mm&r=g) Leila Shields Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania. [See Full Bio](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ](https://livingwellwithepilepsy.com/author/leila-zorzie) [ ![social network icon](data:image/svg+xml;base64,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) ](https://www.facebook.com/leila.zorzie) [ ![social network icon](data:image/svg+xml;base64,PHN2ZyB3aWR0aD0iMTYiIGhlaWdodD0iMTYiIHZpZXdCb3g9IjAgMCAxNiAxNiIgZmlsbD0ibm9uZSIgeG1sbnM9Imh0dHA6Ly93d3cudzMub3JnLzIwMDAvc3ZnIj4KPHBhdGggZD0iTTEyLjIxNzUgMS4yNjkyOUgxNC40NjY1TDkuNTUzMSA2Ljg4NDk1TDE1LjMzMzMgMTQuNTI2NkgxMC44MDc1TDcuMjYyNjUgOS44OTE5OEwzLjIwNjU5IDE0LjUyNjZIMC45NTYyNDdMNi4yMTE1OCA4LjUyMDAyTDAuNjY2NjI2IDEuMjY5MjlINS4zMDczN0w4LjUxMTU2IDUuNTA1NTFMMTIuMjE3NSAxLjI2OTI5Wk0xMS40MjgyIDEzLjE4MDVIMTIuNjc0NEw0LjYzMDIyIDIuNTQ0NzFIMy4yOTI5M0wxMS40MjgyIDEzLjE4MDVaIiBmaWxsPSIjNDM0OTYwIi8+Cjwvc3ZnPgo=) ](http://lzorzie) **Categories:** Family, Leila's Ideas **Tags:** Epilepsy Awareness, epilepsy stigma, Leila's Ideas, Stigma --- ### [An interview with CURE Grantee, Dr. Hiroki Taniguchi](https://livingwellwithepilepsy.com/aboutepilepsy/cure-grantee-interview.html) **Published:** March 24, 2013 **Author:** Jessica K. Smith **Content:** [![CURE Grantee](http://livingwellwithepilepsy.com/wp-content/uploads/2013/03/Dr-Taniguchi-e1364132372587-300x209.jpg "Dr Taniguchi – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2013/03/Dr-Taniguchi-e1364132372587.jpg)Dr. Hiroki Taniguchi, CURE grantee and a research group leader with the Max Planck Florida Institute for Neuroscience (MFPI), was recently awarded $100,000 by [Citizens United for Research in Epilepsy (CURE)]() for his efforts to study cellular structures seeking to identify pathways for treatments or cures for epilepsy. Dr. Taniguchi has generously taken a moment away from his research to answer a few of our questions: **Dr. Taniguchi please tell us a bit about yourself and how you came to join the Max Planck Florida Institute for Neuroscience.** **HT:** In 2000, I received my Ph.D from the National Institute for Basic Biology in Japan. After postdoctoral training at the National Institute for Basic Biology, Columbia University and Cold Spring Harbor Laboratory, I was appointed as a research group leader at MPFI in August, 2012. [![Chandelier Cells (ChC) courtesy of the Max Planck Florida Institute for Neuroscience](http://livingwellwithepilepsy.com/wp-content/uploads/2013/03/MAX_080210WT-a-150x150.png "MAX_080210WT-a – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2013/03/MAX_080210WT-a.png)Chandelier Cells ChC courtesy of the Max Planck Florida Institute for Neuroscience**What are Chandelier Cells, in layman’s terms if possible?** **HT:** Chandelier cells (ChCs) are a unique subtype of inhibitory neurons, which forms synapses at axon initial segments (AISs), sites of neuronal spike initiation, of excitatory pyramidal neurons. They are also called axo-axonic cells. **How are they different from / how do they interact with neurotransmitters?** **HT:** Most of inhibitory neurons usually form synapses on cell bodies and dendrites. As ChCs specifically form synapses at AIS they can exert the most powerful inhibitory effect on postsynaptic target neurons. This feature makes ChCs very special. **[Anticonvulsant medication](http://livingwellwithepilepsy.com/medications) is the most common form of treatment? How could your research change that approach?HT:** Because the cell transplantation is more specific and local treatment than anticonvulsant drugs we can expect no or less side effects. Also, if the transplantation approach works patients don’t have to keep taking medicines, which is not trivial. First, we will try to rescue a seizure phenotype in epilepsy model mice by transplantation of ChC progenitors. Second, we will identify transcriptional mechanisms that differentiate stem cells into ChCs, which will allow us to get enough amount of ChCs from stem cells. In 2012, the Nobel Prize was awarded to the finding of a method to produce induced pluripotent stem cells (iPSCs) from somatic cells such as skin cells. Our basic knowledge on ChCs together with this novel technique will bring a revolution to an epilepsy cure. **Well Dr. Taniguchi, we could definitely use a [revolution](http://livingwellwithepilepsy.com/2012/06/conservative-radio-host-denegrates.html). I’m curious, how did you come to be interested in epilepsy research within the field of Neuroscience?** **HT:** I have been interested in development and function of GABA neuron subtypes in normal brains. Recently, I discovered a genetic strategy to specifically manipulate and label ChCs in mouse brains. Since ChCs are expected to play an important role in normal brain functions, I assumed there must be neurological diseases that could be caused by defects in ChCs and thought my genetic methods should be very useful to find cause, treatments and cures. During my literature search, I realized that the defects in ChC synapses is a common observation in human epilepsy patients. This is the reason why I started to be interested in epilepsy research. > “The use of chandelier cells has the potential to revolutionize our treatment of [epilepsy](http://livingwellwithepilepsy.com/what-is-epilepsy),” said Dr. Hiroki Taniguchi. “If transplanting inhibitory neurons works, we might uncover a cure rather than simply treatments for epilepsy, involving significantly less side effects than anticonvulsant medications used in current treatments.” **You were recently awarded a 100K grant by CURE. What does it mean for your work now that you have become a CURE grantee?** **HT:** I just opened my own lab last August. Thanks to this grant we can hire personnel and buy reagents to perform gene expression studies. This will facilitate my entry into epilepsy research and promote to make my strong team for epilepsy studies. **What do you hope will come out of your team’s research?** **HT:** We would like to show the transplantation of ChCs is effective to rescue epileptic phenotype in mouse models. We also would like to identify transcription factors that determines ChC characters. **Living Well With Epilepsy readers range from newly diagnosed to those who have had epilepsy for decades, they have a wide variety of [seizure types](http://livingwellwithepilepsy.com/diagnosis) and they are from all over the world. Is there any one message you would like to communicate to this group?** **HT:** A lot of researchers at basic and clinical levels are making a tremendous daily effort to find causes, treatments and cures. Please remember [your pain](http://livingwellwithepilepsy.com/personal-stories) is also many other’s pain. **What comes next, now that your group has received funding?** **HT:** We will start collaboration with Dr. Jeffrey Noebels at Baylor College of Medicine, one of world-wide leaders in epilepsy research to study the effect of ChC transplantation on epilepsy phenotype in model mice. We have also begun gene expression studies to identify genes required for ChC differentiation. Hopefully, in two years we would like to get results and publish papers in related journals. The success in this project will promise to get another big grant, bring more collaboration with translational and clinical researchers and eventually lead to practical applications for epilepsy cure. **Thank You** Thank you Dr.Taniguchi for your time and your dedication. Here are links to more information on [Dr. Taniguchi’s work on Chandelier Cells (ChC)](http://www.eurekalert.org/pub_releases/2013-03/rci-mpf031313.php) and on his work at [Max Planck Florida Institute for Neuroscience](http://www.maxplanckflorida.org/). Please comment below to let us know what you think about Dr. Taniguchi’s research. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** About Epilepsy **Tags:** Epilepsy Interview, Research Updates --- ### [Have your say: how would you raise epilepsy awareness?](https://livingwellwithepilepsy.com/advocacy-awareness/events-initaitives/epilepsy-awareness-poll.html) **Published:** November 4, 2014 **Author:** Jessica K. Smith **Content:** [![Collage](http://livingwellwithepilepsy.com/wp-content/uploads/2014/07/Collage-300x102.png "Collage – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/07/Collage.png)Throughout November, Epilepsy Awareness Month, we’ll be asking for your feedback on epilepsy awareness programs. We are looking for you to tell us which programs will have the greatest impact. You decide which programs are most important to you. ### You Decide It’s a simple idea. Just start by answering the poll below. Decide which program can make a difference. Vote for the program that you feel can increase epilepsy awareness. Vote for a program you wish you had access to. \[socialpoll id=”2230062″\] At Living Well With Epilepsy, we have tons of ideas of how to increase epilepsy awareness. But we want to spend our time on projects that will really make a difference to you. ### Make it a Reality Then on **Tuesday, December 2, 2014**, Giving Tuesday, you will have the opportunity to make the program a reality. Your donation will help make the winning program possible. You don’t have to give to vote. You don’t have to vote to give. And of course there will be thank you gifts, too. ### Spread the Word Throughout November tell everyone you can about the poll. Then on December 2, throughout Giving Tuesday you can join in a worldwide movement celebrating generosity. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Events and Initiatives **Tags:** giving back --- ### [Epilepsy Blog Relay™: How Epilepsy Health Storylines is Making a Difference](https://livingwellwithepilepsy.com/epilepsy-blog-relay/how-epilepsy-health-storylines-is-making-a-difference.html) **Published:** November 15, 2015 **Author:** Jessica K. Smith **Content:** ***[![ljamison](http://livingwellwithepilepsy.com/wp-content/uploads/2015/10/ljamison.jpg "ljamison – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/portfolio/nov-15-leslie-jamison/attachment/ljamison)This post is part of the [Epilepsy Blog Relay™](http://livingwellwithepilepsy.com/epilepsy-blog-relay) which will run from November 1 through November 30. Follow along and add comments to posts that inspire you!*** *This post was contributed by Leslie Jamison, EVP of Self Care Catalysts. Self Care Catalysts created the Epilepsy Health Storylines app in partnership with Living Well With Epilepsy.* #### Epilepsy Health Storylines The [Epilepsy Health Storylines](http://livingwellwithepilepsy.com/2015/epilepsy-storylines-app/epilepsy-storylines-app-is-here.html) app was launched on Purple Day: March 26th 2015. Since then, thousands of people have signed up to use this app. From the start, the app was designed with feedback from people living with epilepsy, to best help those affected. Our mission is to help shift the power of health back into the hands of those most affected by epilepsy. #### Your Feedback It is so great when we hear from you on how the app has helped you regain control of your own healthcare. We have heard some great feedback from people using the app and how it is has helped them have more productive conversations with their physicians, helped them to gain insight into their own behaviors to make better choices, and how it helps them stay on track. #### [![sync a device copy](http://livingwellwithepilepsy.com/wp-content/uploads/2015/11/sync-a-device-copy-300x228.png "sync a device copy – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/11/sync-a-device-copy.png)Sync wearable devices We are always updating and improving the app based on direct feedback from people using the app, as well as part of our on-going enhancement plan. One of the newer features we have heard lots of great feedback on is the “Sync-a Device” feature. It can be found on the side menu. Now you can connect with other health and fitness apps that you use, such as FitBit and Jawbone, using the Epilepsy Health Storylines app. You will be able to see your synced data on the My Storylines page (found under the left sidebar) with all of your other data so you can see your complete story in one place. #### New Features for Android Users[![unnamed](http://livingwellwithepilepsy.com/wp-content/uploads/2015/11/unnamed-169x300.png "unnamed – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/2015/epilepsy-storylines-app/how-epilepsy-health-storylines-is-making-a-difference.html/attachment/unnamed-2) There are a few new features that are available only to Android users: **Daily Reminder** Android users now can benefit from a simple [daily reminder](http://livingwellwithepilepsy.com/2015/epilepsy-storylines-app/epilepsy-storylines-new-feature.html) which reminds and enables you to easily enter important information about your health (such as mood, symptoms and medications) to help both you and your doctor get closer to a complete picture of your health. This feature triggers a reminder at 9 PM daily and asks you if you’d like to fill out some information about your day. There is also the option of dismissing it. The great thing about it is that it allows you to enter information without opening the app, so it is a very quick and easy interaction. #### [![unnamed-1](http://livingwellwithepilepsy.com/wp-content/uploads/2015/11/unnamed-1-169x300.png "unnamed-1 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/11/unnamed-1.png) **Improved My Storylines** There is also a new and improved My Storylines that makes it easier for you to see patterns across different aspects of your health. #### What about iOS users? Do you use an iPhone or iPad? Hang on tight, similar features will soon be available for iOS users. #### More coming soon There will be more enhancements coming soon. In the meantime, we hope you find that Epilepsy Health Storylines helps you live well with epilepsy. To learn more click on ***NEXT UP: Be sure to check out tomorrow’s post at for more on Epilepsy Awareness. For the full schedule of bloggers visit [livingwellwithepilepsy.com/epilepsy-blog-relay](http://livingwellwithepilepsy.com/epilepsy-blog-relay).*** ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Epilepsy Blog Relay, Life With Epilepsy, Nov 15 EBR Posts **Tags:** Android, Epilepsy Blog Relay, Epilepsy Tech, FitBit, iOS, iPad, iPhone, Jawbone, wearable --- ### [Give your feedback on a new epilepsy app](https://livingwellwithepilepsy.com/epilepsy-news-and-research/give-feedback-new-epilepsy-app.html) **Published:** January 12, 2015 **Author:** Jessica K. Smith **Content:** ### [![IMG_4177](http://livingwellwithepilepsy.com/wp-content/uploads/2015/01/IMG_4177-300x290.jpg "IMG_4177 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/01/IMG_4177.jpg)Your feedback will make this epilepsy app amazing Living Well with Epilepsy is gearing up to provide an epilepsy digital application that will allow our readers to access a suite of health apps that can support self-care, and improve health outcomes. We are able to provide this thanks to a new partnership with Self Care Catalysts. The epilepsy app is currently in development. At this stage Self Care Catalysts is looking to YOU for feedback to enhance the current suite of apps they have created. We want to be sure it can really meet the needs of a person living with epilepsy. ### Join the discussion We will be talking about the epilepsy app on January 19 or 20 between at 8 PM ET. Both dates are available depending on turnout. If you have time and are interested in providing feedback on what it means to live with epilepsy, let me know. To participate, contact Living Well With Epilepsy via **[email](mailto:info@livingwellwithepilepsy.com?subject=Interested%20in%20Participating%20in%20Epilepsy%20App%20Discussion)** by January 14. We will then have someone from the Self Care Catalysts team reach out to you to confirm details for the discussion. [I’m interested in giving feedback ](mailto:info@livingwellwithepilepsy.com?subject=Interested%20in%20Participating%20in%20Epilepsy%20App%20Discussion) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Life With Epilepsy, News and Research **Tags:** Epilepsy Tech --- ### [Pilot test the Living Well With Epilepsy App](https://livingwellwithepilepsy.com/life-with-epilepsy/pilot-test-living-well-epilepsy-app.html) **Published:** February 7, 2015 **Author:** Jessica K. Smith **Content:** #### [![app](http://livingwellwithepilepsy.com/wp-content/uploads/2015/02/app-264x300.jpg "app – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/02/app.jpg)UPDATE: The response to the pilot testing has been outstanding. We are no longer accepting submissions. Living Well With Epilepsy is partnering with Self Care Catalysts to build an epilepsy digital application. We are looking for volunteers to participate in a brief pilot test of the application. We need feedback from people living with epilepsy and from caregivers. ### Your feedback is key Some of you participated in the first round of feedback. Many of the suggestions you made have already been incorporated into the app as a result.The pilot test will give you a chance to try out the app. And, it will give us a chance to collect feedback on the features and functionality. ### Pilot test kicks off The team at Self Care Catalysts has scheduled two webinars on February 16, at Noon ET and 6pm ET. The webinar will serve as a brief tutorial on how to use the app. Participants will then take part in the pilot testing during which you will have a few days to use the app. Then the team will then follow up with participants on their experience. ### Only a few spots available If you are interested in participating, please complete the form below. After you submit the form, a member of the Self Care Catalysts team will contact you. Participation in the pilot test will be on a first come first serve basis. [Participate in the Pilot Test ](https://docs.google.com/forms/d/1snOj0CQ6-byeQshYpCpmVHkeGgy10rhR-ufJF47jVFE/viewform) ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Life With Epilepsy **Tags:** Epilepsy Tech --- ### [Epilepsy Storylines app is here](https://livingwellwithepilepsy.com/life-with-epilepsy/epilepsy-storylines-app-is-here.html) **Published:** March 26, 2015 **Author:** Jessica K. Smith **Content:** [![android mock](http://livingwellwithepilepsy.com/wp-content/uploads/2015/03/android-mock-e1427413102138-178x300.png "android mock – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/03/android-mock-e1427373124658.png)Living Well With Epilepsy has launched a new mobile and web app just in time for Purple Day. The app, called [Epilepsy Storylines](https://epilepsy.healthstorylines.com/app/#/login), is designed to help people living with epilepsy as they manage their daily routines and communicate with their caregivers. This app is possible thanks to a partnership with Self Care Catalysts. [Epilepsy Storylines ](http://epilepsy.healthstorylines.com)is free for all users. It is available on the Web and on [Google Play™.](https://play.google.com/store/apps/details?id=com.selfcarecatalyst.healthstorylines.epilepsy&hl=en) Epilepsy Storylines will also be available from the App Store℠ for phone and tablet in the coming weeks. [Register on the Web ](http://epilepsy.healthstorylines.com) [Download the Mobile App ](https://play.google.com/store/apps/details?id=com.selfcarecatalyst.healthstorylines.epilepsy&hl=en) #### What is Epilepsy Storylines? Epilepsy Storylines, provides people with epilepsy and their loved ones the tools they need to use the power of their own story to personalize care, create a support network, and influence the way medicine cares for people with the same condition in the future. Our early pilot of the solution gave those living with epilepsy an opportunity to provide feedback and make suggestions for improvements. This process and the app itself elicited tremendous feedback and a great deal of enthusiasm for the technology. Whitney of [Changing Focus: Epilepsy Edition](http://cf-epilepsy.com/) is an epilepsy advocate, speaker and blogger. She has had epilepsy for 29 years and was an early adopter of the application. She notes how the app is easy to use and tracks several different types of information relevant to someone living with epilepsy or a caregiver to someone with epilepsy. “I love that the app is so user friendly. It gives me one central place where I can keep track of my medications, my doctor appointments and it even lets me stamp how I’m feeling that day. It will give those living with epilepsy and caregivers a place to go to build their own circle of support to share their personal journey of everyday life. It’s all very similar but very different,” says Whitney. #### [![epilepsystorylines](http://livingwellwithepilepsy.com/wp-content/uploads/2015/03/epilepsystorylines-300x180.png "epilepsystorylines – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/03/epilepsystorylines.png)What can the app do? **Track Seizures** – Record frequency and gain insights **Learn about Seizure First-Aid** – Learn about the 4Rs of seizure response **Record Appointments** – Note down all appointments to stay organized **Track medication** – Add multiple medications and set reminders **Track Daily Mood** – Track your own emotional health **Create your circle of support** – Share your story with your loved ones #### Benefits Epilepsy Storylines was created with guidance from people living with epilepsy to support those living with epilepsy and their caregivers to make the best possible daily health decisions based on the self-discovery that the app can enable. This early feedback was critical to ensuring an app that could meet the needs of the epilepsy community. The Circle of Support allows users to invite who they want, when they want, to include in their circle of support. This can include family, peers and others affected by epilepsy. They can message or share their health data with whomever they choose. The analytics dashboard can even be shared with their health care provider to enable more informed and focused discussions with a view of real world behaviors over time. #### Where in the world is it available? Currently the app is available in the US and in Canada. We plan to roll it out to additional countries soon! #### Your account **How to download and create an account:** You can create your account by signing up at [epilepsy.healthstorylines.com](http://epilepsy.healthstorylines.com) or by downloading the mobile app on [Google Play™](https://play.google.com/store/apps/details?id=com.selfcarecatalyst.healthstorylines.epilepsy&hl=en) by searching for epilepsy storylines. You can access your account anytime via web and mobile on your computer, tablet and phone. [Register on the Web ](http://epilepsy.healthstorylines.com) [Download the Mobile App ](https://play.google.com/store/apps/details?id=com.selfcarecatalyst.healthstorylines.epilepsy&hl=en) #### **Support and Feedback** **If I need technical help or have feedback who can I contact?** Need some help navigating through the app or would like to learn some tips and tricks? Join a live webinar by filling out [this form](https://docs.google.com/forms/d/1RiI8tFavm6Am7IuU9q3ssvXdEebdTtj22pll2WQC7o8/viewform) or send your questions to . [![googleplay_logo](http://livingwellwithepilepsy.com/wp-content/uploads/2015/03/googleplay_logo.png "googleplay_logo – Living Well With Epilepsy")](https://play.google.com/store/apps/details?id=com.selfcarecatalyst.healthstorylines.epilepsy&hl=en) ###### *Google Play is a trademark of Google Inc.* ###### *Apple, the Apple logo, iPhone, and iPod touch are trademarks of Apple Inc., registered in the U.S. and other countries. App Store is a service mark of Apple Inc.* ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Life With Epilepsy **Tags:** Epilepsy Storylines App, Epilepsy Tech --- ### [Epilepsy Storylines App is now available for iPhone and iPad](https://livingwellwithepilepsy.com/life-with-epilepsy/epilepsy-storylines-app-is-now-available-for-iphone-and-ipad.html) **Published:** April 9, 2015 **Author:** Jessica K. Smith **Content:** #### ***[![epilepsystorylines](http://livingwellwithepilepsy.com/wp-content/uploads/2015/03/epilepsystorylines.png "epilepsystorylines – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/03/epilepsystorylines.png)***Epilepsy Storylines App puts control back your hands [ Living Well With Epilepsy](http:///h) has now launched[ Epilepsy Storylines](http:///h) on the App Store℠ for iPhone® and iPad®. Epilepsy Storylines is, an app that lets users track seizures, medication side-effects, moods, appointments and much more on their smartphone. They can then share any information within their circle of care without ever leaving the app. #### Epilepsy Storylines The Epilepsy Storylines app was initially launched on March 26, Purple Day 2015 for web and on Google PlayTM. Each year, this day is dedicated to increasing awareness about epilepsy worldwide. Epilepsy Storylines is a joint effort between Living Well With Epilepsy, a boutique media brand dedicated to the needs of people living with epilepsy, and Self Care Catalysts, a patient intelligence health solution provider. #### Now available for your iPhone and iPad Epilepsy Storylines is free, and is now available for download for[ iPhone® and iPad® on the App StoreSM](https://itunes.apple.com/us/app/epilepsy-storylines/id975413374?mt=8). It is also available[ on the Web](https://epilepsy.healthstorylines.com/app/#/login) and on [Google PlayTM](https://play.google.com/store/apps/details?id=com.selfcarecatalyst.healthstorylines.epilepsy&hl=en). [![AppStoreLogo](http://livingwellwithepilepsy.com/wp-content/uploads/2015/04/AppStoreLogo-300x103.jpg "AppStoreLogo – Living Well With Epilepsy") ](https://itunes.apple.com/us/app/epilepsy-storylines/id975413374?mt=8)[ ![googleplay_logo](http://livingwellwithepilepsy.com/wp-content/uploads/2015/03/googleplay_logo.png "googleplay_logo – Living Well With Epilepsy")](https://play.google.com/store/apps/details?id=com.selfcarecatalyst.healthstorylines.epilepsy&hl=en) [![Jessica Keenan Smith, Founder](http://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767566881-150x150.jpg "IMG_3837 – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg)Jessica Keenan Smith Founder#### How can an app help? “As a woman living with epilepsy I understand, intimately, how frustrating it can be to manage all the disparate elements of your own health care. This is even more compounded when seizures are not under control or side effects are unmanageable,” says Living Well With Epilepsy founder and managing editor, Jessica Keenan Smith. “Epilepsy Storylines now provides our community with an all-in-one solution that was built with feedback from people living with epilepsy from the earliest stages. I believe this app can make a real positive impact.” #### What users are saying Whitney of[ Changing Focus Epilepsy](http://cf-epilepsy.com/), has had epilepsy for 29 years and was an early user of the application. “I love that Epilepsy Storylines is so user friendly. It gives me one central place where I can keep track of my medications, my doctor appointments and it even lets me stamp how I’m feeling that day. It will give those living with epilepsy and caregivers a place to go to build their own circle of support to share their personal journey of everyday life,” she says. #### Supporting clinical neurology Epilepsy Storylines is an app that clinical neurologists and primary care physicians can feel comfortable recommending to patients. This app not only supports and empowers the patient in their daily life, it is meaningful to physicians as well. Epilepsy Storyline has can help people living with epilepsy better understand their treatment and what’s going on with their bodies. #### About Self Care Catalysts Self Care Catalysts is a health solutions company powered by patient intelligence and analytics. We find the consumer within the patient. Our mission is to build innovative, patient-centered, and technology-driven self-care solutions for patients and meaningful analytics and insights for healthcare organizations and pharmaceutical companies. For more information visit us on the web at[ www.selfcarecatalysts.com](http://www.selfcarecatalysts.com) *Apple, the Apple logo, iPad, and iPhone are trademarks of Apple Inc., registered in the U.S. and other countries. App Store is a service mark of Apple Inc.* ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Life With Epilepsy **Tags:** Epilepsy Storylines App, Epilepsy Tech --- ### [This Week in Epilepsy](https://livingwellwithepilepsy.com/life-with-epilepsy/this-week-in-epilepsy.html) **Published:** April 26, 2015 **Author:** Jessica K. Smith **Content:** [![photo(2)](http://livingwellwithepilepsy.com/wp-content/uploads/2015/04/photo2-e1430080526896-300x247.jpg "photo(2) – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/04/photo2-e1430080975898.jpg)This week the neurology community gathered in Washington, D.C. at the [American Academy of Neurology](https://www.aan.com/) Annual Meeting. I attended the meeting in my role as Director of Education and Membership for the [American Neurological Association ](http://myana.org)(my day job). While I was there, I had several opportunities to discuss the state of epilepsy around the world. Halfway through the meeting I found myself a little disheartened with the state of neurology. #### World leaders in neurology While I was there I was invited to attend a meeting with the [World Federation of Neurology](http://www.wfneurology.org/) leadership. I was the only skirt at the table. If any of you know me at all, you know that I am not a shrinking violet. Around the table there were several people from the [International League of Epilepsy](http://www.ilae.org/), one from the US, and one from Africa. As a person with epilepsy, an advocate for those living with epilepsy and a dedicated administrator in the neurology community, I walked away from that meeting with my energy restored. The people around that table showed their commitment to making a difference in the lives of people like you and me. #### \#LivingWellChat in May I also spent time this week talking with the people from Self Care Catalysts, who developed the [Epilepsy Storylines app](http://livingwellwithepilepsy.com/2015/epilepsy-news/epilepsy-storylines-app-is-now-available-for-iphone-and-ipad.html "Epilepsy Storylines App is now available for iPhone and iPad"). People are continuing to download the app at higher rate than I ever anticipated. To keep the momentum going, we are in the process of scheduling a live twitter chat for anyone who is using the app or thinking about using the app. A chat like this will be a great way to ask others who are already using the app how they like it. I have to say though, the feedback has been amazingly positive. Just check out the testimonial on our homepage. If you have not participated in one of our #LivingWellChats yet check out the transcript from our most recent chat with Dr. Rosalind Picard the chief scientist behind the Embrace Watch. You can find the transcript at [http://twubs.com/livingwellchat.](http://twubs.com/livingwellchat) I will be sure to keep you in the loop when the date is set. We are thinking early May. **Follow Jessica Smith on Twitter: [www.twitter.com/jessicaksmith ](http://twitter.com/jessicaksmith)** ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Life With Epilepsy **Tags:** #epilepsy #seizures, Epilepsy Tech, This Week --- ### [Epilepsy Health Storylines: New feature just for Android users!](https://livingwellwithepilepsy.com/life-with-epilepsy/epilepsy-storylines-new-feature.html) **Published:** August 30, 2015 **Author:** Jessica K. Smith **Content:** [![unnamed](http://livingwellwithepilepsy.com/wp-content/uploads/2015/08/unnamed-160x300.png "unnamed – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/08/unnamed.png)Have you ever felt like your doctor or health care team doesn’t have the whole picture of how your epilepsy affects you on a day-to-day basis? Now [Epilepsy Health Storylines](http://livingwellwithepilepsy.com/epilepsy-storylines) has a new feature just for [Android](https://play.google.com/store/apps/details?id=com.selfcarecatalyst.healthstorylines.epilepsy&hl=en) users that will get you a little closer to that complete picture when you are speaking with your doctor, loved one or caregiver. #### New feature This feature is a simple daily reminder for which allows you to easily enter important information about your health (such as mood, symptoms and medications) into the app. By regularly tracking this information you to have details on your health to share with your doctor, loved one (or just yourself!) on your [Storylines](https://play.google.com/store/apps/details?id=com.selfcarecatalyst.healthstorylines.epilepsy&hl=en). #### Little reminders In talking to users, we’ve heard that many of you recognize the importance of tracking and monitoring their health, but need a reminder to do so. I know that is certainly true in my case. Below you will see two whiteboards currently in use in my kitchen. The first is to keep track of where everyone is throughout the week and the other is just a mind dump. In other words, don’t forget move the laundry from the washer to the dryer. It is kind of weird I know but it is necessary. So, this new feature of the app will encourage (remind) you to build your health story daily. [![](https://livingwellwithepilepsy.com/wp-content/uploads/2015/08/photo-2-e1440881952921-150x150.jpg "photo 2 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/life-with-epilepsy/epilepsy-storylines-new-feature.html/attachment/photo-2) [![](https://livingwellwithepilepsy.com/wp-content/uploads/2015/08/photo-1-e1440881817794-150x150.jpg "photo 1 – Living Well With Epilepsy")](https://livingwellwithepilepsy.com/life-with-epilepsy/epilepsy-storylines-new-feature.html/attachment/photo-1) #### Super simple This feature will triggers a reminder at 9 PM daily asking you if you would like to fill out some information about your day. Just like the whiteboard (because I hate to do laundry) there is also the option to dismiss it. But the best thing about it is that it allows you to enter information without opening [the app](https://play.google.com/store/apps/details?id=com.selfcarecatalyst.healthstorylines.epilepsy&hl=en), so it is super quick and easy to use. #### Feedback We have only rolled this out on [Android](https://play.google.com/store/apps/details?id=com.selfcarecatalyst.healthstorylines.epilepsy&hl=en) for now, and have plans to do the same for iOS in the future. If you are an android user, give it a try and let us know what you think. ![author avatar](https://livingwellwithepilepsy.com/wp-content/uploads/2014/11/IMG_3837-e1416767600266.jpg) Jessica K. Smith Founder and CEO; Executive Director Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world. [See Full Bio](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) [ ](https://livingwellwithepilepsy.com/author/jessica-keenan-smith) Epilepsy [ ![social network 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](https://linkedin.com/in/) **Categories:** Life With Epilepsy **Tags:** Epilepsy Awareness, Epilepsy Storylines, Epilepsy Tech, seizures --- ### [May 2015 #LivingWellChat: On Using Epilepsy Storylines](https://livingwellwithepilepsy.com/advocacy-awareness/events-initaitives/may-2015-livingwellchat-on-using-epilepsy-storylines.html) **Published:** May 8, 2015 **Author:** Jessica K. Smith **Content:** [![#LivingWellChat(2)](http://livingwellwithepilepsy.com/wp-content/uploads/2015/05/LivingWellChat2-1024x512.png "#LivingWellChat(2) – Living Well With Epilepsy")](http://livingwellwithepilepsy.com/wp-content/uploads/2015/05/LivingWellChat2.png) ### What is #livingwellchat? \#LivingWellChat is a conversation that takes place quarterly on Monday evenings starting at 8pm ET, on Twitter. Each chat covers a topic relevant to those of us living with epilepsy. ### What will this next chat be about? We will be chatting with the team from Self Care Catalysts who developed Living Well With Epilepsy’s app, Epilepsy Storylines. If you are using the app or are considering using Epilepsy Storylines, this is a great chance to chat with others who are currently using it. ### What is Epilepsy Storylines? The Epilepsy Storylines self-care tool from Living Well with Epilepsy™, and powered by Health Storylines™, lets you use the power of your story to personalize your care and create your own support network. Epilepsy Storylines allows you to track your seizures, mood, symptoms, and more, on the same timeline as your treatment. It gives you an accurate, shareable record of your experience between physician visits, and helps you and your care team collaborate on treatment strategies. The app is useful for someone living with epilepsy as well as a caregiver to someone living with epilepsy. ### What is the hashtag? The hashtag for the twitter chat is #livingwellchat ##