I thought I wrote this blog entry Saturday and then read it Sunday morning and realized it was not what I wanted to write at all. Then my internet went down , so now I am re-writing it hopefully as I intended. This too is part of Parkinson’s, the part people don’t really know about until they have it or are a caregiver to someone who has it. Parkinson’s is a slowing of the entire body and that includes thinking and reasoning. So fumbling over everyday tasks is a Parkinson symptom. I’m not going into more detail here but see literature from Parkinson’s Foundation (click here) or other resources for Cognitive Symptoms of Parkinson’s Disease.
So having had symptoms of Parkinson’s since 2004, in 2020 how am I really doing. At the moment I feel better than I’ve felt in years, mainly because my back feels better which I attribute to good physical therapists and trainers. I have more hours of the day when I can accomplish projects. But from minute to minute I never know if I’ll be looking good or not. For example, I might be fine going to play cards at the clubhouse at 1:00pm but by 2:30, even with taking medicines on time I might feel sluggish. This is even more of a problem at night, after sitting through a play or concert I don’t know if my stride will be full or shuffling.
Keeping active, exercise and improving my diet are the keys I believe to my feeling as good as I am feeling at this time. We also do a fair amount of travel which leads me to the point of my thoughts this day, dealing with the unpredictability of Parkinson’s.
I’ve never been a “beauty” and I’ve never been good with having my picture taken but I’ve become self-conscious of how people look at me. When I’m at an event for example, it seems that the event photographer constantly passes over me. I know I don’t take a good picture easily but, they could be more polite and don’t exclude me.
My day has ups and downs. I virtually always ask for a wheelchair when I fly, but if I don’t need it, I just tell the gate agent, thanks but I can walk fine at the moment. Boy do I get funny looks, but people just don’t know.
One last note, have you ever noticed that the forms for new patients at most of the clinics, doctor’s offices, hospitals, etc. rarely lists Parkinson’s on a list of “Do you have or have had any of the following?”