I am doing that. Typing. And it is a slow, painful process. I’d have paid for somebody to stop me from writing this sentence.
I’m in a stage, late afternoon, sun going down, that messes with the minds and bodies of many of us with Lewy body dementia and other brain disorders such as Alzheimer’s and Parkinson’s. It’s called sun-downing.
For me right now, it is that my hands are trembling. Another name for it is tremors. When nighttime slowly drops like a dark curtain, people with dementia may get confused, disease symptoms may be exacerbated. Some dementia patients are at risk of wandering.
I guess in the old days, folks went to bed when it was dark. But now we work until dark and beyond. We got light. We got lamp lights, overhead lights, street lights, flashlights, dashboard lights, spotlights, and refrigerator lights which turn off when you close the door. Or does it really?
Is it possible the refrigerator has been fooling us all this time, and nothing happens?
But I digress. Man, do I digress.
These tremors I’m having due to this sun-downing effect are hard to describe. It’s like a mind-over-matter thing. I can stop it if I focus directly on the tremor. There I just did it for 10 seconds — but then I started to think about this writing and in seconds the leg starts twitching, my fingers slowly tap the keyboard just like they did in typing class in high school. You put your two hands on the keyboard and your fingers still seem to magically find the right letter. Only now it is excruciatingly slow as some unseen force is holding them back. My right little finger twitches as I type. It struggles to hit the P.
I get flustered and know that if I push down hard on the laptop with the heels of my palms, I can go faster.
But right now I was going to ask a rhetorical question about how this technique works, but I had to stop to find the ‘question mark.’ It’s shift ‘back slash’ or is that a forward slash??????? (Please intersperse these extra question marks to sentences that need them.)
I’m doing all this, not because I like the torture of a million minor trembles, but because I have Lewy body dementia and maybe my experience as a journalist can give you an idea of how it affects the body. Plus, I think it really helps in slowing down the disease’s symptoms. Can’t prove it, but I absolutely think it works.
During day or night these bouts can come, but sundown is prime time. The best way to make it stop is to stop what you are doing, close your eyes and think of something that makes you happy. And breathe.
When in this agitated state of tremoring and tightening your muscles you focus directly on what your body can do to help. I know, your toes are tied in knots, your entire body is rigid and then you counterattack with more relaxation and body awareness, and rest. Try thinking about relaxing your feet. From the feet go up to your legs and focus on untightening and relaxing. and so forth up your body one area at a time.
LBD kills multitasking. Focus becomes difficult. Now I am going to tell you to do the opposite of what I just said about dealing with these tremors. That’s a way to keep the symptoms at bay. Now that we’ve learned some of those skills, it’s time to fight back.
Make the brain work to do what you want to do. Don’t ask for help in putting on that shirt. Type, knit, play dominoes, card games or anything that works out your brain messages to your body. Get your brain started again by working against what the alpha-synuclein proteins are inflicting.
Be hopeful.