"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 2016 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 2017, 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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- Harley Strouts

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.
 

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