My Parkinson’s Year 5 Update

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When I was diagnosed with Parkinson’s in August 2019, a doctor told me that Sinemet (Levodopa/Carbidopa), the starter drug of choice, often runs its course in 5 years, and for 50% of the people, it stops working after 5 years.

As I approached my five-year anniversary, I was feeling like I might be part of the “lucky” 50% who are stable on Sinemet. My left hand tremors appeared to me to be gone and my REM Behavioral Disorder was mostly gone after adding a dose of nighttime melatonin.

Then my wife pointed out that a couple of fingers on my left hand were tapping, first just a bit and then more and more often. She also noticed that my left hand was often curled tightly into a fist when I slept and she even tried to pry them loose, but they curled back again. Then I realized that nearly all the time my fingers were curled up, making my hand look like a claw. I could concentrate and stop it, but as soon as I stopped focusing on uncurling my fingers they resumed their claw shape.

Since then it feels like Parkinson’s is having its way with me. In no particular order I have developed these new symptoms:

1. I am always exhausted, needing to sleep far more than my pre-Parkinson’s 7 hours.
2. My usually healthy appetite has disappeared and often I just don’t feel like eating.
3. When just sitting, my left foot will start tapping.
4. My voice quality vacillates from my normal voice (which is on the high side) to a hoarse vocal quality.
5. My processing speed seems much slower, frustrating my wife as she awaits answers or comments and I am slow in responding.
6. Multitasking has became very difficult. I can handle one information stream like TV, but not another like my wife’s questions. I say “what?” to her a lot.
7. Even though I feel as though I am speaking in a decently loud voice, my wife tells me that I mumble and am hard to hear.

Stress, even a small amount of stress, sends my body into tremors and exacerbates my other symptoms. And my life lately has had its share of stress which has further exacerbated my symptoms. Cold weather makes it even worse. Often I feel a combination of anxiety and depression that I can’t shake. My neurologist added in an antidepressant which I hope kicks in soon and helps reduce my stress and perhaps helps reduce some of my symptoms.

Compared to many of the people I know with Parkinson’s, I should consider myself to be lucky. I guess I’m not as lucky as I had hoped to be. As a scientist I am always monitoring my Parkinson’s progression and I am deeply saddened by the onslaught of symptoms. To others I seem to be having a minor form of Parkinson’s because few of my symptoms are outwardly evident. But my insides are struggling and I am none too happy about that. I’ll talk to my neurologist when I see her later this month and hopefully she’ll have some ideas about my condition.