Friday, December 2, 2011

Meet the Faces of Epilepsy

When I was growing up, I knew one person with epilepsy: Robert.  My knowledge of epilepsy was limited.  I knew he had seizures, I knew not to panic when they happened (early training for my overall “let’s not panic” motto) and our parents took him to a lot of doctor appointments.  They were on such a quest for a cure they once even took him to see a neurologist in Switzerland (from our home in Nebraska).  They wanted the best neurologist in the world to see him and made it happen.  Unfortunately, they returned defeated since the neurologist didn’t recommend surgery (or any other options) at that time.

Robert was different because he had seizures but he had friends. Not all the kids were very understanding but he did his best to educate them even then.   By the time high school came for him, he had friends but many people shied away from him too (having tonic clonic seizures with a loss of urinary control doesn’t do much to put you on the popular track in school).  Robert once told me that he realized people were saying mean and incorrect things about him after one of these seizures so he asked his teacher to let him give a talk to the other students to educate them about the disorder.  The teacher allowed him to talk to the class and Robert spread epilepsy awareness in his own way.  I am grateful to that teacher because, even years later when telling me the story, Robert feels great pride that he was able to educate the other kids about epilepsy.  
During Epilepsy Awareness Month in November, I was fortunate to meet many other extraordinary people either with epilepsy or caring for someone with epilepsy.  Over the next few days, I want you to meet them too.  

One of the first people I met when I started the month of epilepsy awareness was Linda.  Linda is a mom, grandmother and wife living in North Dakota.  She’s probably living with a bit of snow right now!  She’s also a caregiver to her son, Jason, who (if I didn’t know better) would think was Robert’s twin.  Their stories are very similar. Linda shares their story:
“Jason had his first seizure in 1971. Up until then he was a normal, happy, healthy 2 ½ year old. From that day forward our whole world turned upside down for him and our family. Epilepsy not only impacts the person who has it, but the whole family unit has issues in many different areas of their lives as well. We live in a small rural community in SW corner of North Dakota, so, we had to travel many miles to find the medical help we needed for Jason. There was no Internet or great support systems back then. We made numerous trips to Mayo Clinic, U of MN, and other clinics in ND and SD. We tried the Kerogenic Diet, surgery in 1983, VNS implant in 1990 and of course every med and combo of meds on the list. Jason just seemed resistant to all meds. Usual side effect was horrible behavior and since he lived at home, that was just not acceptable. At present he is on Carbatrol and Zonisimide, which seem to be working well together for behavior.
“After 40 years, he still averages about 30 seizures a month. Every year he goes downhill physically and mentally. Jason lives at home with me and his Dad.  I have always been a stay at home Mom. We are basically his shadows. He attends a sheltered workshop 5 days a week.  Jason has two younger brothers, who he calls his "big brothers," and he is an Uncle to 5 kids. He loves home, puzzles, books, movies, especially the Star War Movies and playing board games. He always tells people "you can choose to be happy or sad. I choose happy.

“My husband, Gary, retired early to help care for Jason and we basically just live a simple quiet life and enjoy home and family. We were told in June, by the doctors at Epilepsy Group in St. Paul, MN, that we were pretty much out of options.  Unless research can find some miracle, I doubt Jason will ever be seizure free. Sadly, I've resigned myself that this is probably the best it will be for Jason for now. After 40 years, one just gets worn down mentally, physically and financially.”

Even with these frustrations, they "choose happy."

I am grateful to have connected with Linda and look forward to sharing with her any new information about Robert and learning more about Jason.  You can read more about Jason’s story at Crowdrise which is a fundraising site.  Linda has stepped out of her comfort zone to raise money for CURE to help, as she says, “keep the lights in an epilepsy research lab for a day or two.” 
Tomorrow, I will introduce you to another Robert and his assistance dog Boomer!


Anonymous said...

Hi Trish...

Thank you for telling our families' story. After re-reading the last sentence, I should like to add, (which I failed to do originally) that even tho after 40 years of getting worn down mentally and physically , I can look up from whatever I may be doing, and see Jason looking at me with a smile, usually, and I think, by golly, I really have no reason to complain, or throw a "pity party". Jason is still smiling and still with us after 40 years of seizures!...:-)...Something I need to remind myself of more often.

When I read what you wrote about your parents, I literally got chills, since I know that feeling of visiting Doctors and coming home without many answers over the years. But as a parent, you continue to hope, to travel where you have to, and find any answer you can to help your child, no matter how many times you come back home "defeated".

I would love to have been in that class when Robert was "educating"...:-):-):-)...Jason was the first student to go thru our school system with Epilepsy. He too "educated" many teachers and students for all of his years in school. It was a bumpy ride for all involved, but we all came out the better for it in the end.

I too continue to look forward to your Blog and how Robert and your family are doing on this journey.

Thank You again for reaching out to me in such a gracious and kind way...I appreciate it more than I can find words for...:-)


Trish Hughes Kreis said...

Linda, You are very welcome. We're in this together! :-)

Melinda said...

I am again reminded of someone else's strength and positive outlook on life even with the rollercoaster ride called epilepsy. and I am once again more appreciative of the many things my 28-year old daughter can do, in spite of her epilepsy, which is fairly well controlled be her medication. I am in awe of people like yourself, who "choose happy" and manage to make that their motto. I feel bad because at times because I wish for "freedom" - but then I realize that even though she may be with my husband and I for many years in the future, our live will be what we make it. thank you again for beingg such an inspiration.

Trish Hughes Kreis said...

Melinda, Thank you for stopping by. I am inspired by you and your daughter and my brother, Robert, who doesn't let epilepsy affect his positive outlook or his faith. I am inspired by the many people I have met that live with epilepsy with such resolve. You are so right - our lives will be what we make of them!