We are dystonians

I saw a personal video of a baby with dystonia. Despite what its body was going through this tiny thing of a few months old looked almost amused or entertained by what his body was doing. He was not crying when his body spasamed. He was just living. I guess when you don’t know different this is all you know of who you are. I imagine as the baby gets older he will begin to feel and see how his body is different from others. I only hope the baby doesn’t feel pain.

I saw pictures too of kids going under DBS, their before and after pictures. As an adult the idea of someone opening up my brain to fix me terriefies me. How does a 5 year old or a teenager deal with it. How scary. Poor things. My specialist doctor  with 40 years of experience is absolutely certain my dystonia can be cured with proper therapy and stress relief. Though I believe there is more to it than that, I do pray his snobby ass is right and I can be one of the lucky few who doesn’t have to worry about a future with DBS anylonger, but what about the little baby, all the little babies and the kids with dystonia. It seems so unfair. So unjust that they are born with such a crappy disorder especially when I know first hand how difficult it can be to walk, talk, and worse sometimes breath. I know there are other terrible and sometimes worse things kids have to go through in life and I wish I could help with it all and I will try to do what I can I guess I can just tell my story and share stories of others. With dystoniamovement disorder

 

 

 

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