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!
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.
2. Gemma’s Story: It’s time for a change when you’re not seizure free anymore
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.
3. Epilepsy Blog Relay™: Melanie Griffith on living with epilepsy
I am not going to lie. I was absolutely shocked when my Twitter feed blew up with Tweets about Actress Melanie Griffith, 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!
4. Epilepsy Blog Relay™: Jacob’s Not So Everyday Life
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.
5. Traveling with Epilepsy: Does air travel altitude lower seizure threshold?
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.
6. Facebook Says Epilepsy May Offend Users
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.
7. Epilepsy Blog Relay™: Caring for a sick spouse
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
8. Karl’s Story: The Gift of Epilepsy
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.
9. Emily challenges the status quo of her mood
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
10. Epilepsy Blog Relay: When Giving Up Is Not An Option
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.
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Jessica brings a unique perspective to this leading epilepsy blog as she was diagnosed with epilepsy as a teen. She also brings 20+ years experience in marketing.