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In Your Trembling Hands

Friday April 01, 2022
In Your Trembling Hands
Let the bells ring out and the banners fly! Once again, it’s April, Parkinson’s Disease Awareness month. And just in case you are trying to get into the PD awareness spirit, here are some things you may have been unaware of that are worthy of your notice regarding this disease.1. Sorry to break it to you, but although you might think you are healthy might feel healthy, and to all outward appearances seem healthy, you may have Parkinson’s. Parkinson’s is a slow-moving, stealthy adversary, supremely subtle in its progression. It insinuates itself into your being with glacial pacing and, like a glacier, grinds down anything in its path. Unlike a glacier, it is not known to retreat. Parkinson’s is actively undermining patients at least a decade before it is diagnosable, and by the time it is recognizable, it will have destroyed from 60 to 80% of the cells in the deep brain that make the neurotransmitter dopamine, a critical part of the systems in the brain governing motion.2. What the hell? How can I have already lost 60 to 80% of cells critical to making a neurotransmitter before I become symptomatic? Answer: The brain does something amazing. When the substantia nigra, the structure of the brain that secretes dopamine malfunctions, the brain either reconfigures the way it processes the neurotransmitter, making up for the loss of the production by using the dopamine at its disposal more efficiently, or it recruits another part of the  brain to produce dopamine to supplement the substantia nigra's output. I’ve read reports of either bring the case. This works until the compensatory mechanism is overwhelmed and can no longer make up for the diminishing  production of the substantia nigra. That tipping point seems to occur when the brain has lost 60-80% of available dopamine producing cells. That’s when diagnosable symptoms begin to show up. But until then, you skate.3. Although it is classified as a movement disorder, Parkinson’s is more than shaking and slowness. There is a whole host of symptoms that are not movement-related. These non-motor symptoms may include depression, apathy, changes in sense of smell, sexual dysfunction, constipation, abnormalities in the composition of microbes in the gut, low levels of vitamin D and more.4. While PD is thought of as a brain disorder, it goes way beyond the brain and manifests itself throughout the entire body, and, at least in some cases appears to originate in the gut, from where pathogens move to the brain via the vagus nerve. People who have their vagus nerve severed have a lower incidence of Parkinson’s than the population at large.5. A Parkinson’s diagnosis is not the end of all good things in life. While it may mess you up in ways that are maddening, interfere with activities of daily living, cost thousands of dollars in medication expenses and doctor bills, cause violent falls, impair both speech and writing, rob you of your sense of smell and taste, crumple you up with painful muscle cramps, ruin your nightly sleep, force you to undergo brain surgery, isolate you socially…Hold it.That is a fairly persuasive argument that it is the end of all good things in life.But good news! Whether it is or not depends greatly on you.How you react to these drawbacks, setbacks, and back stabs will determine or at least deeply influence your experience with PD. Is this blaming the victim, a cold-hearted insistence that you march forward on broken legs?No.It is merely recognition that one more requirement of living with Parkinson’s is rising to meet the neverending trials of this disease. You must compensate just as your brain does in dealing with the loss of cells that make dopamine. The broad outlines of living well with PD are known, exercise, socialize, don’t give up the things you love to do, manage your meds well, see a movement disorders specialist if one is available reasonably near you. Learn all you can about PD, especially if you live in an area where there is no expert Parkinson’s care, where it is up to you to maintain yourself. If you can do that to the best of your ability, many obstacles will resolve themselves, or at least retreat in importance. Until there is a cure, the best thing we can do is do the best we can.

Peter Dunlap-ShohlPeter Dunlap-Shohl
NWPF Blogger

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