Twenty-Two with Spinocerebeller Ataxia

April 17, 2015

Many have often wonder what goes on in a person’s life who has Spinocerebeller Ataxia.

I try to live my life like any other 22- year-old, whether its watching TV with my family, playing video games in my game room, or being a student in college. Some of the things that I do take a lot out of me. Simple things can require all of my energy, while someone who doesn’t have Ataxia may not give it a second thought. I do all the daily necessities like everybody else, just in a different way than others. The struggles I face each day include the occasional bad fall and having trouble reaching the bathroom in time.

I don’t know why people call me an inspiration or a hero, I live my life like everybody else. Many people have asked me what I would do when a cure is found and my response is this: I do not know if I want the cure because I am afraid of what will happen to me as a person, I like who I am right now and I am about used to everything Ataxia has thrown at me. I do not want my personality to change. But I would be selfish not to take the cure because of my family, even though they have learned about Ataxia though the years along with me, and they also know very well about the obstacles I face on a daily basis.

As far as friendships go, since I graduated high school I have noticed a decrease in friends. I still have a very limited number of friends that I still talk to and see every once in a while. As for the loads of friends that I have had in high school I do not know if I did or said something, but as I sit here now I think to myself who needs those people? A lot of young people do not know what to think of Ataxia since it is usually diagnosed in older people. I was that one lucky one who had the privilege of being born with Ataxia.

Spinocerebellar Ataxia is a rare degenerative neurological disorder that take place in the cerebellum. The cerebellum is the part of the brain that controls fine and gross motor skills. With this disease, the cerebellum begins to atrophy and the muscles are slowly shutting down.

I will continue this fight against Ataxia until a cure is found. Many people who have Ataxia look to me as a positive influence, I always see the positive in any situation I am in. Spinocerebellar Ataxia has made me into the person I am today, and I would not change anything about me.

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