Meet Missy



Meet Missy: She is a wife, mother and friend. She has cortical myoclonus which causes body jerks. Her story is worth your time.

When I saw Corey’s VLFA story, it caught my eye. I have had trouble with things that he has had trouble with. Being in a wheelchair, it’s hard to access things like going into buildings. I have a mobility scooter and I may be getting a mobility wheelchair. I can walk but I have to use a cane because of my condition.

I used to drive. One time, I drove from the house to the dollar store. I had the jerk and it made my steering wheel turn. It scared me so I got ahold of a neurologist. I decided I couldn’t put my life and my daughter’s life, or anyone else’s life in danger. The doctor agreed I should not drive.

I have cortical myoclonus. It makes my body jerk. I have a hard time walking. I can’t drive anymore. I have to depend on people to take me places. There’s not transportation here in Rifle if you need help. When you don’t have wheels it can make it really hard. Summertime is easier but in the winter time it is very hard.

When the weather is nice I get on my mobile scooter and do what I need to do. In the winter there is too much snow and I can’t take it out and about. But I have also had problems with the scooter breaking down. If I go through just a tiny bit of water, it has been breaking down. Then they tell me it’s my fault that I’m doing something to it. It’s not like I’m jumping curbs with it.

My condition makes my body jerk and I never know when it’s going to happen. I went to Glenwood one day. I was going to cross the street and I passed out in the middle of the street with my walker. I woke up in the middle of the street. Not one person helped me. I never know when it’s going to happen. This is something I don’t wish on anybody. It’s not a fun thing.

Some places don’t have accessibility buttons to push. This makes it hard to get inside. The lights when you cross the street, are on the other side of the pole than the direction you are crossing the street. It makes it hard to press. I have to depend on people. I can do things around the house but to go out and about, it is worse. I’ll be sitting sometimes and the jerks will start happening spontaneously. I never know from day to day what it is going to do.

I just want people to know that it’s not easy. Sometimes people will look at you then just walk on. Sometimes people will stop and try to help you. People do need to know for handicapped people it is really hard to get into buildings. I noticed it more when my bod started to jerk and I couldn’t walk. It was a real eye opener.

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Where would accessibility be an issue if you suddenly could not walk?

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Resources:
United States Access Board
Interactive Accessibility
ADA.Gov

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Vail Daily Article
Aspen Times Article
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