"Your Stories..."

Epilepsy can happen to anyone, at anytime.  Personal stories put a face to epilepsy, empower people, destroy myths and help reduce stigma.  Your story is important and may help someone feel less alone or inspire them to tell their story.  Here are some stories people in Saskatoon have agreed to share with us.  Consider telling us YOUR story.

My son moved to Toronto for university in the fall of 2015 to pursue his dream and two weeks later had his first tonic-clonic seizure.  My wife and I took turns living with him so he could finish his first year of school but we were unsure how he could continue given he was experiencing regular, monthly seizures. We were very lucky that only 364 days after his first seizure, he was able to undergo brain surgery to remove an area of focal cortical dysplasia in his frontal lobe.  After four months of recovery at home during the fall of 2016, he returned to the University of Toronto to complete his studies and will graduate this spring with his undergraduate degree.  He still experiences a seizure periodically, but he is not letting that stop him and we have hope that in time his seizures will come under full control.  He is my hero and by being honest and open about his experience has taught the people in his life so much about positive perseverance in the face of adversity.  

- G. Newman, a Dad

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- RJ 

A colleague was shopping with family and woke up later in hospital.  We have done a lot of learning at the office about how best to support her and her family.  It's brought us together as a team in some new ways.

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I’ve had epilepsy for 35 years now. It started at age 10, and continues to this day. When they first began they were just mild blank stare attacks.  Pretty harmless at first, but as I got older they got worse.  The blank stares were the beginning of my seizures.  I then start an uncontrollable shake and jerk if I’m lucky my bladder will not release itself on to my bed. At 16 years old you look forward to getting your license. As a person with epilepsy it was a lot more difficult. If you were able to get your license, you needed to get a letter from your doctor every time you needed to renew it. The doctors I had when I was younger tried me on every medication they could. Some landed me in the hospital and made things worse than they already were. Now I found the best doctor, with a great team of people that got me in for surgery to remove the piece of my brain that causes the seizures. Unfortunately for me it didn’t take as well as I hoped, but my family says it’s a major improvement from before.  Instead of having one every night it’s down to once a week, and they are less intense than before.  Now I have most of mine at night while I’m in bed. Sometimes I have fallen out of bed and hurt myself.  I’m still working with my doctor and his team to find the proper medication and plan for me.  Like most people with epilepsy I pray to be seizure free, but at 45 I don’t think it’s going to happen.  Now I just hope I’m not another SUDEP casualty.
 

- Harley Strouts

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- Pam Shillington

I was diagnosed at 4 years of age with petit mal (absence) epilepsy.  The cause was an incident when I was a baby when my then 3-year old sister gave me a toxic substance to drink, thinking she was giving me medicine, which resulted in my heart stopping for a couple of minutes.

My seizures were fairly well controlled throughout my school years, where I experienced, on average, 2 seizures/week.  My seizures were unnoticeable to most people.  In my early teen years, I realized that I wasn’t totally disconnected from my surroundings during a seizure.  I couldn’t stop the seizure but I could still hear, see, and smell and if I really focused, I could speak briefly during the seizure. 

For some unexplainable reason, my seizures changed when I was in my mid-20’s.  I started having complex partial seizures, usually 3-7 per week.  My neurologist tried me on every combination of anti-convulsant drugs that was available at that time and nothing would control the seizures.  Eventually I spent 10 days in RUH in Saskatoon on telemetry to determine if I would be a candidate for surgery.

I was 27 years old when I travelled to Montreal Neurological Hospital and Institute, where I spent 5.5 weeks.  I underwent brain surgery, where the neurosurgeon removed a thumbprint-sized piece of scar tissue from my right temporal lobe.  I had a partial seizure during the surgery.  When the neurosurgeon came to see me the next day, he was very optimistic.  He told me that the seizure allowed him to see what parts of my brain were involved in seizure activity, and the only part that was active was where he operated.  Since he had successfully removed all of that scar tissue, he was sure there was nothing left to cause seizure activity.  After 2.5 weeks of follow-up tests and recovery, I was released from hospital.

I remained on my medications for 1 year.  I had no seizures during my recovery year.  I went to RUH the year after my surgery for a whole day of follow-up tests.  My neurologist told me that my surgery had been a 100% success and he drew up a plan for me to slowly come off of my medications.  It took 5 months to go from 6 pills/day to none. 

Being 100% seizure-free, life was really great . . . . . for a while.  It was 1997, 7 years after surgery, and I was one month into a new job.  One day at work I had a grand mal seizure.  My co-worker phoned 911.  I woke up at RUH sometime later, not sure where I was, how I got there, or why.  I spoke with an ER doctor who wrote me a subscription and made me an appointment with a neurologist.  Where was this coming from?  I was absolutely terrified.  After more tests, I found out that I also have an abnormality on the left side of my brain (which wasn’t visible during my right temporal lobe surgery).  My medications were once again changed.

I continued to have yearly appointments with my neurologist.  Most of the time I would report “0 seizures in the last year”.  I was out for a walk on my lunch break one day in 2014 when I had another grand mal seizure, someone called 911 and I was taken to RUH.  This time I wasn’t treated and released.  I spent 5 days/4 nights in hospital.  This was not a grand mal seizure; I had gone into status.  Status epilepsy is when a seizure goes on and on.  It is very dangerous and, in my neurologist’s words, “is very traumatic to the brain and can cause death”.  If I should ever have another status seizure, my neurologist says, I will undergo another surgery.

Does epilepsy define my life?  No, it doesn’t.  I have been married for 31 years.  I have 2 stepchildren and 4 grandchildren.  I have worked at a very successful company for 22 years.  I am a volunteer and Board Member for 3 local non-profit corporations.  I volunteer for a 4th organization as well.  I have many hobbies and interests.

There is life after epilepsy!

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