We all know that Parkinson’s is a degenerative disease. But my Movement Disorder Specialist says that if it starts slow, it usually stays at a slow rate of change and visa versa. In other words the younger you develop this the longer you are going to have to live with it. He also says you don’t die from Parkinson’s but rather you die with it. (Perhaps due to complications from Parkinson’s)
Actually much about how I’m doing is still as described in my April posts, so I won’t repeat. I still am pleased that I’m doing well and can participate in some cooking and chores around the house. I’m pretty sensitive to temperature changes so the heat spells doing do very well for me
My biggest frustration is that my best cognitive time going to and traveling between exercise classes. By the afternoon it’s a lot harder to concentrate and be organized. I still want to get out more in the afternoons to socialize. Evenings can be hit or miss. I don’t really like going out to dinner because it’s easier to not eat very much rather than take my chances of having difficulty swallowing. I try to make sure I take my 9pm pills early or leave an event before my walking stride minimizes.
I’ve switched personal trainers in NY. Diane knows a lot more about Parkinson’s than Marcy (see next post). We’re making a picture for each exercise and she’s very strict about body position. That said, I’ve come to the conclusion that these exercises might make my muscles stronger but they aren’t really going to help me feel better in the long run. I’m still going to be stiff in the mornings but I can help myself turn better with stronger arms. (I assume). And I guess I’m better at forcing my body straight. One puzzling observation is that I often wake up and can move relatively easily and pain-free in the bed but when I stand I have both pain and stiffness (and lack of walking stride).
So I guess I’m looking as good as can be expected for having Parkinson’s about 15 years. I’ve been able to meet people and not have to explain my appearance right away. Many say “I never would have guessed.” But without taking medicine every three hours I don’t know how I would appear to strangers. Also I’m often pain free mid-day for a few hours. However if I walk too long or stand at the kitchen counter too long. The pain starts up. Looking back at my notes, a twisting feeling when standing at the kitchen counter has been a complaint almost since the beginning.
A lot of people have more serious problems but many issues “go away” Parkinson’s is my constant companion but I try not to let it stop me. But as my friend, I hope the readers of this will be patient but not condescending with me.