Yay, Parkinson’s! Still

By Teresa Swartz Roberts

Blog post 42. Copyright 2021

I almost let the waning hours of Parkinson’s Awareness Month get by without a comment. If you’re reading this blog, you’re aware of Parkinson’s Disease. The title is Life through the Lens of Parkinson’s, after all. I usually write about life and how Parkinson’s fits into it. Today, the last day of Parkinson’s Awareness Month, I think I’ll talk about Parkinson’s itself.

First, I’d like to acknowledge that April is also Autism Awareness Month and the calendar home of many other commemorations and celebrations: Earth Day, Cesarean Awareness Day, International Pillow Fight Day…

Why should you be aware of Parkinson’s? Most of us know someone who has it. The first person I knew who had it was Michael J. Fox. Of course I don’t know him personally, but he came into my house every week on TV. He was diagnosed with Parkinson’s at the age of 29. And now that he’s almost 60 like me, it’s only natural that I want to compare myself to Fox from time to time. I see lots of similarities. We both have medication-induced dyskinesia, uncontrollable movements that make us feel more comfortable while probably creeping out the people around us.

I just read his most recent book, NoTime Like the Future: An Optimist Considers Mortality, in which he explores not being indestructible and tries to rediscover his optimism. His conclusion centers on gratitude. Same for me. I may have good days and not-so-good days, but I am grateful for the days.

The biggest difference between the two of us is when and how we were diagnosed and the trajectory of the disease once it was identified. By the time I was diagnosed in 2015, I had serious symptoms that didn’t seem to add up to anything,

There’s actually a better idea for why you should be aware of Parkinson’s. You may have it someday. You may have it now. Trust me, my life was better after the diagnosis. If I didn’t know what was happening to me now, and what taking my meds and exercising and being in tune with my body are doing for me, how they are improving my life, I would be lost.

Don’t be afraid to have strange symptoms checked out. Even if your doctor thinks you’re crazy, make sure that your symptoms get on a record somewhere. If someone had looked at a comprehensive chart for me, someone who knew what to look for, I could have gotten treatment sooner. Small handwriting and bathroom issues and hoarseness don’t seemed to click as a movement disorder. The list of quirky symptoms can be pretty long, and it can point to other ailments. And while your phone may be a good place to start, don’t trust the internet to be your only diagnostician.

I know that someday I’m not going to win this battle. I also know that the diagnosis gave me extra years to be me. That’s why I have to say, just as I did in my very first blog post, “Yay, Parkinson’s!”