I am pleased to present another installment in the Ataxia Profiles: This Is Us. Today we will be introduced to Bill Baldwin. Bill lives in Georgia and is the father of a daughter who is a school teacher.
I will let Bill tell you a little bit about himself:
I’ve always been awkward and clumsy, but I wasn’t diagnosed with any abnormality until age 40-ish (I’m 60 now). My first diagnosis of “cerebellar degeneration” came from a neurologist in a nearby city who I was very displeased with. I got my primary care doctor to refer me to Emory where they made the general diagnosis of ataxia. Haven’t had genetic testing for a specific diagnosis yet because (1) it’s so expensive, and (2) my neurologist hasn’t encouraged it.
My hobbies/interests didn’t really change much when I was diagnosed. I worked, drove, sang, read, rode my bicycle…. As I’ve aged, things HAVE changed. I was able to keep working until I became eligible for regular retirement, but then I quit. No future in driving 30 miles in the dark every morning. Haven’t stopped driving, but I pretty much confine it to around my small town during daylight.
I still sing, but I notice that I’m not able to enunciate as well as I once was. Hope that doesn’t become something that makes me quit. Don’t read as much as I used to. My eyes don’t track very well, and I think that’s why I don’t enjoy it as much. The bicycle eventually became a recumbent tricycle, and a couple of years ago I stopped riding altogether. My peripheral vision’s pretty much gone, and I didn’t feel real safe. Also, I couldn’t carry around the rollator I’ve started using.
My main ‘new’ hobby is going to the gym 4-5 days a week. Don’t lift weights, but I stretch and spend 30 minutes each on the rowing machine and the stair-stepper. I feel like the exercise and the fact that I watch my weight have combined to keep me ambulatory.
I guess the hardest things to do on a day-to-day basis are to (1) put aside my pride in the interest of being safe, and (2) keep trying to do what I’m able to do while being realistic about what I can’t. I had a hard time with starting to use a cane a few years ago and an even harder time transitioning to a rollator year before last. I had to force myself to realize that the alternatives were falls and their consequences. Example of (2)—I can help unload the car when my wife gets home from the grocery store, but I can’t do a lot to help people move furniture.
Thanks, Bill! I really like the example given of helping unload groceries…but at the same time, being realistic about things like moving furniture. I am in the same place…and continuing to do what It helps me to remain positive. Good word, Bill!
Until next time…take care, and I will write again soon. Jason
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