Jean-Marc

Hello..My name is Jean Marc Roy. I am married with two adult children and a grandson. I also have five siblings. I’m 62 years old. In 2013 I had a mining accident and ended up having three operations on my back which resulted with severe drop foot. I have severe pain on a daily basis. I was ambulating with a walker and a wheelchair and scooter. August 13, 2022, I was outside sitting on a chair and transferring to my scooter and fell and hit my head on the scooter and my hip hit the scooter. I was in major pain was admitted in the hospital for 15 days. The doctors misdiagnosed me. Instead of a concussion diagnosis, they diagnosed me with vertigo. When I was released from the hospital, my symptoms were getting worse. I was sick from day one when I was admitted in the hospital. Neural North diagnosed me with concussion. The doctor suggested that I stop taking pills for vertigo. After a few days. I stopped being sick and start to feel better but all my symptoms continued.

My symptoms are dizziness, poor eyesight, noise in ears, shaking, vomiting at times bad perception, trouble swallowing, and my speech is impaired. When I hit the scooter that ataxia came about which I never had that before. I was leading a normal life before the concussion. My life has changed a lot a lot of things I can’t do anymore, especially because of my shaking and my eyesight. I have to sleep in the morning for an hour and sleep in the afternoon for an hour and also maybe after supper for an hour and then when I wake up, I feel much better. I haven’t driven for almost 2 years and I really miss that. I lost a lot of friends because I can’t do things that I used to do. I sold a lot of things especially sports equipment.

I’m looking for a second opinion because I live up north in Ontario and hard to find anybody that knows anything about ataxia here. There isn’t anybody who could properly diagnose me. I really don’t know where I stand. I know I am getting worse. My wife has to feed me sometime. I have to drink with a straw. My life is getting harder for sure. I need help. I have PSW to help me five days a week, twice a day. Also, I can only ambulate when I use a wheelchair now. It is impossible to move around with a walker. I cannot do that anymore. I think NAF is a good place to help me out.

When Were You Diagnosed? Which Type (If Known)?

2023

How Has Ataxia Impacted Your Life?

My life has been turned upside down. Had to sell all my boat, bike and snowmobile. I did not drive for almost 2 years I really miss that. Lost lots of friends. Nobody in my area understand what ataxia is. I’m not the same person in many ways.

What is One Thing You’d Like the People to Know About Ataxia?

I would like for the public to realize how serious ataxia is for the self and their families. As a patient, it’s a daily problem all day long till you go to bed and for the caregivers it’s like taking care of a baby. Sometimes I need help to eat because I shake too much. Many times I need help dressing, showering, and getting things. I can keep the caregiver busy.

Share Your Advice – How Can Others Support Someone with Ataxia?

Caregivers have their hands full…others should be more informed.

How Has NAF Helped You or Your Family?

NAF gave me a lot of information and more coming in.

What is Your Ataxia Story?

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