Epilepsy Blog Relay: Phil Gattone and Neurish want to help people with epilepsy connect

This post is part of the Epilepsy Blog Relay. This blog post was submitted by Sunovion Pharmaceuticals Inc., the Founding Sponsor of the June 2019 Epilepsy Blog Relay.

Phil Gattone’s Neurish

Growing up with epilepsy, I was able to meet a lot of other people who were having seizures and who had epilepsy. A lot of them weren’t nearly as lucky as I was; they didn’t have a support system. I knew I wanted to provide a way for those people to build their own support system, so for the past several years, I’ve been working on an app called Neurish—a play on “neurology” and “nourishment.” It’s a way for people with epilepsy to connect with others and with resources to find the support they need to nourish their own goals and accomplishments.

I think having met people with epilepsy who didn’t have the kind of support system I had was one of the things that really inspired me to make this online community. You see all these different apps out there to connect people, but nothing that really bridged the gap between technology and the epilepsy community. And as I grew up and met more people with epilepsy, I found confirmation that something like this app needed to happen. I already had a passion for computer engineering, so I went to college for that, and once I graduated, I used those skills to start the website, Neurish.me.

Neurish.me took about two years to create, and, although it’s still in beta mode and hasn’t officially launched, you can still access the site. Once you land on the Neurish.me home page, you can click “request access,” then I’ll get an email and send the registration link. Right now, the app is mainly on the web, but it’s mobile responsive, so you can view it on your phone
without issues. We use the GPS function to link you with other people, so no matter where you are, when you load the app on your phone, we connect you with people in your area. Right now, we have almost 100 users. The feedback so far has been fantastic, and we’re using that feedback to continue making adjustments. Some users have said that they’d never met anyone with epilepsy until the site, so they really like how they can connect with other people and not feel alone. I’ve even met a few of the app users in my area.

Ultimately, the goal with Neurish is to connect patients, caregivers, and mentors who have had similar experiences with epilepsy. You can join and create a user profile that includes medical info and personal interests. Once you create a profile, you can look at other profiles for similarities. No matter what kind of seizures you experience, you can find others who are in similar situations. If your daughter has epilepsy, you can find others who have daughters with epilepsy. You can connect, message, add them to your circle, and create a community.

It’s something I’m really proud of, and I hope it can be a resource for you in expanding your own epilepsy community and support network.

SUNOVION is a registered trademark 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. NPC-APT-US-00004-19

This blog post was submitted by Sunovion Pharmaceuticals Inc., the Founding Sponsor of the June 2019 Epilepsy Blog
Relay.

 

Brain Tumor and Epilepsy: Life after surgery on a benign brain tumor

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. 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‘. 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


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?


Staying positive

I love yoga which helps calm me 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.

 

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Epilepsy Blog Relay: One epilepsy mom reminds us to let our kids play

This post is part of the Epilepsy Blog Relay™. Follow along all month!

This blog post was submitted by Sunovion Pharmaceuticals Inc., 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 https://livingwellwithepilepsy.com. For the full schedule on bloggers and more on epilepsy awareness, visit https://livingwellwithepilepsy.com.

Epilepsy Blog Relay: Traveling as an Autistic with Epilepsy

This post is part of the Epilepsy Blog Relay™. Follow along all month!

Have you ever wondered what it’s like to travel as an autistic adult with 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 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 who is planning a trip to Italy, desperately seeking answers.

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