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Learning to 'Workout With Cerebral Palsy'

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I’m 39, with spastic ataxia cerebral palsy and psoriatic arthritis. I have an associate’s degree in human services and a certificate in recreation therapy. It took me longer then most, but when you have cerebral palsy that’s often what happens when you want to get something or go somewhere in life. It may take you longer to get what you want or where you want to go in life, but if we work at it, people with cerebral palsy will get there. I know because I have in many parts of my life, and I’m still working on other things I want and need in life. I’m one of 17 million people around the world with cerebral palsy.

Most people know cerebral palsy as a childhood disability, but what happens to those children when they turn 18? We still have it, but unfortunately as we age, there are not very many health professionals who deal with adults with CP. As a child I always heard cerebral palsy never gets worse. That is true to a point. Unfortunately, just because we have cerebral palsy it doesn’t stop us from getting other health issues, and that’s what medical professionals don’t understand.

My challenge right now is not just keeping my cerebral palsy in check, but also keeping my psoriatic arthritis under control. If I only had one of these health issues I could deal with it, but I have both. “Workout with cerebral palsy” is a metaphor for my life. I have to “workout” just to keep the two disabilities in check. About five years ago I joined a United Cerebral Palsy Group (UCP) to help me understand more about CP in my adult life. It was time to take control of my future and embrace my disability. As a kid, I was open to a point about having CP because I knew my parents were there to take care of everything I needed. But now as an adult, the roles are reversed. I needed to be in charge of my life, though my parents would be around to support me when needed. Going to UCP helped me to see a part of myself I never wanted to get in touch with.

While at UCP, I became friends with someone a little older than me who had cerebral palsy. He was in a wheelchair and he lived on his own. He and I had a lot of things in common. We both grew up in a era where it was a struggle going to public school and being the only student with cerebral palsy. While getting to know each other, he told me he had a different type of cerebral palsy. He suggested that I go on to Facebook and check out all the groups and pages about cerebral palsy.

So I started going on to Facebook to see what cerebral palsy was like for other people. After about three or four months of asking questions and making a few friends, I thought maybe I could start a group on Facebook called “Workout With Cerebral Palsy.” I named it that because I had noticed every group was focused on a certain topic. Seeing that I loved to work out in a gym, I thought my group would focus on how exercise can benefit people with cerebral palsy. I would start off with just writing about how no matter what kind of CP you have, you can modify any kind of workout to fit your needs. I would also discuss how much working out will strengthen both mind and body.

I found out that there was a very high rate of depression among people with cerebral palsy. I believe this is due to the fact that many people with cerebral palsy lack opportunities for independence. As I was reading more about cerebral palsy, things started to make a lot more sense to me because most of what I read was what I’ve been feeling. As I was posting these things, people were saying they felt the same way. After a while, “workout with cerebral palsy” took on a new meaning. Not only were we talking about working out in a gym, but also everyday adult life with cerebral palsy, from getting up to going to bed and everything in between — work, being independent, and relationships between family and with the general public.

I was wondering more about life as an adult with cerebral palsy. I was talking to people with full wonderful lives. They were married, they had their own houses, families and more. I was 37 and still questioning everything. As I was talking to one of the members of the group I realized writing “workout with cerebral palsy” all the time was time consuming, so I shortened it to WOWCP. Doing this gave the group the whole new meaning I was looking for. It became a metaphor for my life and the life of the members/friends. For us Workout With Cerebral Palsy reflects how everyday tasks can take 3-5 times more energy for us than for able-bodied people.

When I say those five letters, I know just because I have cerebral palsy, I don’t have to give in to the low expectations put on me at birth. I don’t have to give into thoughts that I’m not going to reach my goals. I just say WOWCP in my mind and I realize I can do it. As a person with CP, I have to work with it as a couple have to work together to come to a compromise on things in their relationship. I’ve been in a relationship with cerebral palsy from day one. Recently I realized I have to compromise with the CP to get what is good for both of us. There might be days I want to stand out more and get things done, so those are the days when CP has to try to behave — i.e. keeping the spasticity under control. Then the next day I let the CP take over and just relax. I may not like it, but that’s the way it has to be.

After almost three years of doing all this, I feel like I can go after a dream I had while in college. I hope one day I will be able to go to a college class to talk about cerebral palsy and why it is so important for medical professionals to understand and study it.

WOWCP has reached out to almost 1000 people with CP and caretakers of people with CP around the world! Many visit my site to discuss issues most health officials can’t help them with. This is why I feel it is so important to let the medical professionals learn more about what goes on in our lives.

If you have cerebral palsy or know someone that does, whisper those letters “WOWCP” and after a while you just might find it works. I believe you will get everything you want in life if you just workout with cerebral palsy.

Originally published: May 9, 2018
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