Tomorrow Is International Ataxia Awareness Day
Story by George W. Forman
This Monday, September 25, is International Ataxia Awareness Day. It’s an annual day designed to put a spotlight on a rare neuromuscular disease which affects a person’s motor skills, and how to walk and talk due to the degeneration of the cerebellum. If you’re not aware of “Ataxia”, you aren’t alone. I don’t recall ever seeing a fundraising event for it locally, no
If you’re not aware of “Ataxia”, you aren’t alone. I don’t recall ever seeing a fundraising event for it locally, no mentions of it on TV, and certainly no telethons for it. As far as a celebrity that could be the “face” of Ataxia, that’s difficult for most people to think of as well. According to the National Ataxia Foundation, there are about 150,000 people in the U.S. affected by this disease. But, I would like to tell you about one, who will forever be the “face” of Ataxia. That would be my father.
Not very long after my father retired, and moved permanently here to the Jersey Shore, he started having problems walking. At first, we thought it was something related to a stroke he had in his 50’s but that wasn’t the case. But he could still get around by touching a chair or table, or your arm if he was walking with you. Eventually, he had to start using a walker, and after a while, he was confined to a wheelchair. So my mother and I, on a daily basis (and with help from my brothers and sisters-in-laws) did what we could to take care of him, as we watched this disease progressively and slowly steal my father’s quality of life in what should have been a wonderful retirement. That’s sort of a short version of the story, but believe me, it was a tough 8 or so years for us.
This November will be 25 years since my father’s passing (from an abdominal aortic aneurysm). Not long after that, my mother headed an Ataxia support group here in New Jersey, until the travel was too much for her to attend the conferences. And to address something I mentioned earlier, I know exactly when I’ve heard Ataxia mentioned on TV. One of which was when John Glenn came back from his trip on the Space Shuttle and a commentator said he would be suffering from Ataxia-like symptoms. As for a celebrity “face”, I’ll mention the name of Bob Allison, who played for the Washington Senators and Minnesota Twins in the 50’s and 60’s. After he retired from his post-baseball career in sales, he began to exhibit the symptoms of Ataxia and was diagnosed with what is called “Olivo-Ponto Cerebellar Atrophy”, which is exactly what my father had. There’s a research center at the University of Minnesota in Allison’s name, and his former teammate Jim Kaat helps to raise funds for research. I wish I could end on a happy note and mention breakthroughs on a cause or cure, but sadly I can’t.
If you or someone you know has Ataxia or would like to know about it, please check out www.ataxia.org.