I Have Ataxia

SDC11200I have Ataxia!  And I am not the only one. If you are reading this, this may also be what you are dealing with or someone you know may be dealing with this. So, how do I respond when people look and stare?

I have Ataxia!  Most  people never heard of it. But great strides are being done to change that:  The NAF, The National Ataxia Foundation, http://www.ataxia.org/, and people like John Mauro right here in Massachusetts, http://www.rideforjohn.com/. You’ve probably seen me stumbling around, grabbing the railings, or maybe you’ve noticed that my speech is a little garbled.  I have something called Ataxia.   (Let‘s face it, something’s up.  I walk around with this Great Dane!) One of the main symptoms of my Ataxia is clumsiness.  I have terrible hand-writing.  I also have very poor balance.  Actually, my cerebellum is shrinking.  Balance and coordination are a challenge. This is a genetic condition.  It is definitely not contagious. This condition is very uncommon.  I see Dr. Schmahmann, a neurologist at Mass. General.  There is currently no cure, but wonderful research is being done.

However, everyone’s Ataxia is different.  Everyone’s story is different.  So, let’s speak up.  There are people out there who will listen.   There are support groups that are designed to listen.  Join us.


One thought on “I Have Ataxia

  1. Several years ago, I was seeing a local neurologist and he told me to train for a marathon, he was speaking figuratively but I took him literally, and I have been training every since . He also told me I would be in a wheelchair within five years and was nearly 8 years ago and I am definitely not anywhere near that. I believe that having a positive attitude helps greatly. I know when I meet new people or strangers see me they must wonder what’s wrong with me and I bet what must’ve popped into their mind first is that I must’ve been drinking, but I don’t care what they think. The people who are close to me and my friends know my situation and understand. I have been stopped by people while pushing my jogger and have asked me why I am pushing an empty baby jogger around. I tell them what the issue is and they understand. I agree with Donna, that everyone that has ataxia is affected differently. But whatever the situation is having a positive outlook greatly helps.

    Liked by 1 person

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