International Ataxia Awareness Day 2018
Tuesday, September 25th, marks the annual International Ataxia Awareness Day around the world. It’s a day to put the spotlight on a rare, not often heard of, neuromuscular disease of the nervous system, which progressively affects a person’s motor skills, and how to walk and talk. The word “ataxia” comes from a Greek word “a taxis”, meaning without order, or incoordination. According to the National Ataxia Foundation, there are about 150,000 people in the United States affected by this disease. And it’s a disease that can either start presenting symptoms during childhood, or later in life. Such was the case with my father.
As I wrote to mark the day last year, a few years after my father retired and moved permanently here to the Jersey Shore, he started having trouble walking. As is often the case with people who are in the first stages of neuromuscular problems, an outsider might think that person was drunk. He could get around the house by touching the backs of chairs, or tables, or holding an arm if he was walking with you. By this point, he stopped driving, so if there was a positive to this, it was that he had to stop smoking (none of the family would go buy cigarettes for him, and we were afraid of what would happen with the loss of his coordination if he tried to light a cigarette). Eventually, he needed to use a walker, and then later was confined to a wheelchair. My mother and I took care of him at home (with help from my brothers and sisters-in-law) as best we could, and watched this disease rob and shorten my father’s retirement years He eventually died from an abdominal aortic aneurysm at the age of 71. This November will mark 26 years since his passing.
As a post-script to this, to get some answers for my family, my mother had some of my father’s brain tissue analyzed by Robert Wood Johnson, and Baylor University to check his DNA to see if the Ataxia gene would be passed along to my brothers and other family members. We were relieved to find out this was not the case. Also, my mother became a New Jersey support group leader for a while. There’s no major celebrity “face” for Ataxia…the closest would be former baseball player Bob Allison, who after his playing days with the Senators and Twins, was diagnosed with “Olivo-Ponto Cerebellar Atrophy” as the cause of his Ataxia, which is what my father had. Hopefully, we’ll see some fundraising efforts locally, and I would gladly take part if possible. If you or someone you know has a form of Ataxia, or would like to know more about it, you can find out more at www.ataxia.org.