I 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.