In this blog I usually write about symptoms of Parkinson’s Disease and my reactions to them, and this is necessarily something of a downer. But I don’t want to give the impression that Parkinson’s has made my life unhappy or a drag or tragic. So in an effort to achieve some balance, here is a list of some of the things I have learned from having Parkinson’s over the past 15 years:
Eventually, fear gets boring. At least mine has. How long this takes varies from one person to the next, but my friends with Parkinson’s all look like they have arrived at a similar place, approaching life with grit and determination, (along with a large measure of dark humor).
People will help me if I let them. The amount of real, genuine and effective help which I have received over the years is amazing. I continue to feel grateful and uplifted when ever I think about the friends and family who are on my side.
I think that I look and sound worse than I actually feel. I can imagine that this is true of other people as well.
My low energy level is frustrating, but I don’t need a lot of energy to do the most important stuff. For most of my life I’ve been a driven person, always needing to do more. Now it’s the opposite. Parkinson’s for me has been a continuing process of prioritizing, always in the direction of doing less. The continuing process of identifying things that I feel compelled to do, and then deliberately giving them up, has felt liberating, at least once I’ve stopped resisting.
Until the medical community finds a way to either slow down or (hopefully) stop the progression of the disease, the prognosis isn’t going to change. New symptoms will continue to crop up, and existing symptoms will continue to get worse. I will have to continue to spend much of my time with my therapeutic activities. So far these activities have been meaningful and enjoyable; I’m trusting that this can continue.
Despite everything, I feel as good or better now than at any time since I first started on this adventure. My motor symptoms are largely controlled by DBS and my exercise and dance program, and I’m holding my own with the non-motor symptoms, at least for now. I have enough income to live a comfortable, if rather frugal, life, which goes well with my low energy level.
Life is still worthwhile and fun.