FACES OF EPILEPSY

Sis Pukler

My seizures started after I was in a car accident at twelve years old. I had been having massive migraines that would last some times for more three days. In high school, I went to the office because I was not feeling well. I woke up in the hospital. I had a grand mal seizure. It shocked me when I heard this. I managed to graduate high school in spite of feeling drowsy and confused all the time from the medication I had to take. The medication did not control the seizures all the time.  I felt very alone.

As an adult, the seizures went away. They returned in my mid-forties. I am back on medication which makes me feel the same way I felt in high school.
I cannot drive, have experienced seizures at work and suffer from aching muscles caused by seizures. I am not the same any more.  I fear everyday that I might have a grand mal seizure. The person that I was is gone. I am someone’s wife, the mother of two great children and a grand-maman to two wonderful grandsons.

Cathy (Burr) Adamson

I am an adult living with Epilepsy. I was diagnosed when I was 13 years old due to a concussion. I was devastated. I thought my life would be over. I felt so isolated, I had nobody around me that understood what I was going through. People shied away from me. They did not know what to do if I had a seizure. They looked at me differently, it was like I was a freak or something. Imagine your Doctor telling you to wear a helmet if you rode your bike or that you would never drive a car! I had turned to reading to get support, back then the internet wasn't heard of. I had read somewhere that "Epilepsy is the ability to have a seizure" I embraced this and made it my life motto.

Most of my seizures are under control, due to various medications. When I was first diagnosed I felt like I was a Guinea Pig. I worked with three Neurologists before we finally found something that worked. I know my triggers: stress and flashing lights. I hated EEG scans, they were torture. Reflecting on my past, I realize that I needed to experience them in order to figure out what was causing my seizures. I wish there were tests that aren't so torturous.

My last grand mal seizure was July 13, 1985 on my Wedding Day. I still have the occasional petit mal seizure, but I can live with that. My seizures are so minor people don't even realize I am having them. Now people are shocked when they find out I have Epilepsy.
I have overcome so many obstacles in my life: I have my driver's license (since I was 18). They wanted to take it away from me, but I fought for it. I have driven a car, truck, fork lift and even used machinery that they told me I couldn't!

Needless to say: I am one of lucky ones, I am a survivor!

Cindy Fetterly

It’s a mystery when a seizure disorder transpires late in life.  Mine began in 2006.  I found myself lying down in the middle of a highway with some important looking vehicles surrounding me and wondering what I’d done wrong.  I soon experienced how ugly an aura can be and thought of the many times I’ve fortunately come through seizures while alone.  The last one was grand mal and fortunately in front of a devoted community after a pulse could not be found.  I did not know this happened until experiencing the bumps on my head, bruises on my chest from C.P.R., pain I would have traded for anything and the surprisingly, particular people who came to see me following.  I was unable to drive for a year.  It’s been nine years since I’ve been seizure free and I’m now fortunate to be extending myself to my community.  I wish I didn’t rely on medication but can’t deny that we should be grateful there are a variety of suitable medications.
 
     Many conditions have made leaps through enabled studies and government funding.  This has enriched many lives.   People of all ages undergo multiple, successful heart surgeries.  In recent years heart defects can be diagnosed before birth and ready for surgery upon delivery.  Wouldn’t it be a breakthrough to find some aid in epilepsy research?!
 
 I used to babysit the Reid girls.  A vivid memory is how Michelle’s strong self-indulgence set the example guiding her younger sisters who looked up to her.  They were just as confident and therefore never stopped dancing and looking for a limelight.
 
  I was asked to explain how this has affected my life.  I’d like to refer to all trials; not only epilepsy.  It is difficult for us to expect that good things might come from bad.  Permanent effects are sometimes not seen and difficult to hide, embarrassing or painful; yet some are visual but not as they appear.  We naturally judge and all need reminding as individuals.  I encourage looking beyond the surface and considering that when you get to know somebody, it’s more than a learning opportunity, and you are doing yourself a favour as well.  You can care/devote completely without complete understanding.  I’ve wanted to see the best in people but since I’ve been involved through experience and work, I chose to thank God for an understanding, and hope to be able to use that in my life.
 
I’d like to thank my long-time friend Kathy Reid for extending an invitation and encouraging my story for the first time, as well as the rest of her family for their efforts in this awareness.

Cole Donnelly

My first seizure happened while I was in grade 10. I had a few of my buddies stay over one night, and come early morning my epileptic shock began.

My arms became tense and started to shake a little as they came closer to my body. My buddy had begun kicking me back because he was under the impression I was messing with him. They repeatedly asked if I was okay but I couldn’t respond. A few seconds later everything went black and I became unconscious. When I opened my eyes my friends were gone and I was surrounded by strangers, at least that’s what I thought. There were firefighters, paramedics, and even my parents trying to calm me down, none of whom I recognized. I panicked and fought everyone around me until they could finally calm me down.

When I arrived at the hospital the easy diagnosis was that I was a kid so I had been messing around with drugs the night before. I continued to swear I would never touch the stuff, but I wasn’t taken seriously until my blood results came back showing that I had been telling the truth. I had been stuck in the hospital for two weeks before they discovered I have epilepsy, and that it’s genetic. This came as a shock to my family considering we have no record of any relatives with epilepsy.

I was put on dilantin for a year but did not like all the side effects from the drug. I talked to my specialist and was told that as long as I kept a balanced lifestyle (watch stress levels, eat properly, limit alcohol consumption in future) it was alright to go off my medication. Seven years went by without any issues, until last April when I had a seizure at work. This one seemed to be different because of all the signs leading up to it. The couple weeks leading up to the seizure I noticed my tremors had been getting worse from all the energy drinks, stress, and lack of sleep during exam time. I have now lost my license for a minimum of 6 months and been put back on the medication that I had been trying to stay away from.

This seizure helps remind me that life can change in a second and if you just listen to your body and make some sacrifices it will tell you what it needs, so hopefully they can be prevented in the future.

​Courtney

Courtney's seizures started as a 3 year old. Imagine the horror as a parent walking in to see your baby in a full Status Epilepticus.
I'm one of the fortunate ones because I had previous experience working in a field where I had training on how to recognize and assist my daughter to the best of my ability.

I can remember that day as if it was yesterday. From calling the operator begging her to help me get help for my daughter, to then handing her to the very able arms of her Uncle Jerry, one of the attending Paramedics. Driving at top speeds to get to the hospital, to not knowing if my daughter was going to live or die.

We have had many journeys since then, and eventually to calling Sick Children's Hospital our second home. I still get the stink eye for saying that in front my daughter, Courtney. Because, according to her it's not my home and it's not a fun place to be. I agree, but she knew this was the place to give her the best chance at beating it.
Unfortunately, for Courtney, after 2 major brain surgeries, that were unsuccessful, she still experiences seizures. She wanted to take the risk of surgery to live life free of epilepsy. However, it was unsuccessful but she knew she had to take the chance.

Today Courtney is a highly active Special Olympics Olympian. Her philosophy is I have Epilepsy, but Epilepsy will never have me. 

Makenna Gilmore

Makenna was diagnosed with Chromosome 22 distal deletion syndrome several years ago in the years that have passed she has had many surgeries and been diagnosed with many things - ADHD, a communication learning disability,  valgus deformity of her legs, migrate and tricuspid valve regurgitation.  She has had a sub mucus cleft palate repair, attempted failed repair of a hole in her ear drum plates, screws in her legs and oral surgery all things that pretty much fall under the Chromosome 22 distal deletion syndrome.

A Saturday in December 2016 was the scariest day of our lives because it was  the first time we visibly saw Makenna have a seizure.  She collapsed face down and started twitching. We took her to the hospital and were told she may have got up to fast and passed out. So from then on anytime she got up we told her to be slow so she didn’t pass out. 

Three weeks later, on Saturday December 23, she got up to  get something to eat  and just dropped and started shaking again a lot more than the first time.  We went back to hospital and they  chalked it up to hormones. We still basically had no definite answers. Because she has a heart condition, they had her wear a heart monitor for 24 hours to make sure it wasn’t’ her heart. Her EEG it came back clear so they sent her for a sleep deprived EEG and an MRI.  In March  the neurologist  diagnosed her with Right Frontal Lobe Epilepsy.

They said she may have been having seizures for years in her sleep because she was soaking the bed  and now since being on medication she is dry 95% of the time. They believe there is a connection with the Chromosome 22 distal syndrome. With Chromosome 22 deletion there is a definite connection but there is not a lot known about Chromosome 22 distal Syndrome .

Since the diagnosis, we are always worried that she might have a seizure. Some of the side effects of the medications are not nice so we are hoping they subside. This is a journey we didn’t’ expect to be on and she already goes through a lot, but it is the journey we are on and will fight along side of her every step of the way.