From Riding a Harley Davidson to a Catrike -Ataxia is not who I am, it is what I have. I was diagnosed with Hereditary Friedreich Ataxia (FDRA) in August 1998.
I had neurological issues for a few years before being tested (e.g. gait or the airplane walk, slurred speech, balance, weak muscles.) In 1997, a year before my FDRA diagnosis, I had a mild head injury from an auto accident. When my balance and gait got worse, I thought it was from that auto accident. But no such luck. I had a very sharp neurologist at Michigan University Hospital in Ann Arbor, Michigan who ordered genetic testing. The results indicated I had FDRA.
But my story does not stop there? For me, it is now about the “Fight for a Cure” and “Ataxia Awareness.” I found the Arizona Ataxia Support Group when we first moved to Arizona. I needed them and they needed me. They were experiencing “burn-out” and I had lots of energy, time, and new ideas to give. I am now co-coordinator since August 2010. I found the NAF, great support help and friends forever.
After these 16 years of living with ataxia, my priorities are diet, exercise, support, education, encouragement, safety and FAITH which is huge for me. We cannot “stick our head in the sand” and hope it goes away. We all have gifts and talents. My message is “– USE THEM, it’s not about what you lost or can’t do, it’s about doing things differently.”
I love adventure even with ataxia! I got married on a Harley -rode it out side-saddle, zip lining, 14 day white water rafting, and I won a Catrike from Ride Ataxia.
It’s not about me, or you, it’s about HELPING FIND A CURE!