The Parkinson's Dyskinesia and Tremors Groove
I love music. It defines my life, and frankly, I can’t have enough musical mixes to express who and where I am. Let’s not forget the jams. As the band MC5 so aptly and profanely told us, we need to kick them out.
Lately, I’ve had the live jam version of Creedence Clearwater Revival’s, "Keep on Chooglin'" in my head. While the studio version rocks, the even better live version focuses on John Fogerty’s harmonica before the mix goes back to the guitars wailing again over Doug Clifford’s drums.
It's currently featured in a Netflix documentary. Another video on Youtube features the characters from Charles Schultz’s Peanuts "chooglin'." When I hear it, I'm already head bobbing, toe tapping, and moving my body rhythmically in the same way these fans do. Because I'm a nice human, I've tried to teach Sparky to "keep on chooglin'," too. I don't think he gets it, but he appreciates that I do.
The only difference is that I can "choogle" with or without the soundtrack in my head. All too often, I’m moving involuntarily, swaying, and bobbing. In short, I'm letting out my Parkinson’s movements because that’s what Parkies do. This is called dyskinesia.
I’d like to tell the people around me that I’m jamming out to CCR or Neil Young in my head, but that wouldn’t always be true. Even if I was jamming to them or something else, it would only be partly true. That said, when I catch my head swaying in the dyskinesia groove, which is annoying, I find myself intentionally bopping my head to a silent jam like the one in Phish's "Divided Sky."
It's easier to rock out than talk Parkinson's sometimes. However, should they ask, I would tell them what tremors are and how they feel. Put simply, they are a funky effect of my motor system gone off kilter. Many Parkies have them when they rest, though not all Parkies do. Other conditions, like Lyme disease have tremors, but they don’t occur at rest ... just when the person is moving.
As for dyskinesia, it's what happens after people take levodopa/carbodopa over an extended time. I guess it is what it is and it helps with some things, but yeah... it sucks.
For me, I have tremors in my hands, feet, and upper body. Some people have them in their tongue. My carbidopa/levodopa does help with them, but sometimes, it takes longer than others to move past the frozen/rusty hand feeling in the morning. This is on my list of things to discuss with my doctor. Additionally, I have to eat before I take my tablets or I will feel nauseous/cold sweats. Ugh. Not fun.
Currently, the tremors in my left foot mix horribly with my dystonia to create a painful feeling. My toes will curl, a condition known as "hammer toes." When they do, it hurts to wear shoes. It also hurts to walk too long in shoes. Most days, I will counter this with a pair of sandals. Lately, these have been hurting more and more, though.
Occasionally, I will wear boots for walking, but they’re heavy and can hurt my feet when I’m at rest. Because of this, I sit in stocking feet more and more. Nevertheless, that can hurt, too. Yesterday, for instance, I had to do this at the dentist. I explained why the shoe came off and the assistant nodded appropriately. Whether she got it or not, I don’t know. To me, it was about being comfortable. I don't have time to worry about perceptions. Parkinson's has erased that.
I’ve also found that I need to take my shoes off at work. Nobody can see under my desk, so it doesn’t tend to be something I get asked about on a regular basis. Normally, if I have to leave my corner of the room, I’ll put my shoes back on, but if it’s a quick walk to the bathroom, I occasionally walk stocking-footed down the hallway. I’ve been asked a couple of times about this, which leads to the Parkinson’s discussion.
It is what it is.
I’m not trying to stink people out or not be professional, but alas, the mix of tremors and dystonia isn’t fun. Besides, if anyone wants to trade me life without Parkinson’s/hammer toes/dystonia/tremors, I’ll wear the most uncomfortable pair of dress shoes from wake up to sleep time.
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