Today is International Ataxia Awareness Day. Back in June of 1998 I had never heard the word. However, by the following month, the word “Ataxia” had become all too familiar. It was really scary for a mother of a 2-year old and a 5-month old baby. But now I look at my now 19 and 17-year old and realize how much we’ve spread the word. We have reached countless playmates and their parents, classmates and teammates. Not to mention all the groups I’ve participated in over the years. However, there are still lots of people out there that have never heard the word “Ataxia”.
At times I am too “aware”. I see my limitations very clearly. However, I want to be able to “ignore” the facts sometimes and rewrite the script so to speak. At those times when I can easily admit I have Ataxia, I wish I could just say, “I have Ataxia” and not have to then explain. It’s a script that is spoken all too often…
Many have seen me stumbling around, grabbing the railings, or noticed that my speech is a little garbled. I have something called Ataxia. Actually, the part of my brain called the cerebellum is shrinking. Therefore, running and jumping don’t come naturally for me. Balance and coordination are a challenge.
How did it all start?
Well, it might have always been there but it became obvious when I attempted to teach my 2-year-old how to jump rope. Well, after falling, I realized that I could no longer jump rope. I knew something wasn’t right. A doctor pointed out that I could no longer walk a straight line and that my speech was off. At that point, I had an MRI and several blood tests.
How did I get this?
I have ARCA-1. This is a genetic condition, passed on from both of my parents as it is a recessive gene. Each of us 5 children had a 1 in 4 chance of getting this. I guess I hit the jackpot.
What kind of treatment is there?
This condition is very uncommon. I re-learned how to run and jump in physical therapy. I see a neurologist at Mass. General and take particular vitamins each day. My service dog, Denim, has been a “life-saver”. She provides the balance in my life, both literally and figuratively.
Therefore, my wish for everyone with Ataxia is for it to one day be a known condition, so much so, that people can easily admit to it instead of taking the easy way out and ignoring it.