La Bene Vita

by Brandiwyn🎶

Rated: 18+ · Book · Personal · #1411600

The Good Life.

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#1110336 added March 10, 2026 at 7:59pm
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Parkinson's Disease - Spring 2026

goals medical parkinsons

Yesterday, I had my six-month followup with my Movement Disorders Specialist (MDS), neurology nurse practitioner, Jessica. She appreciates my tech savvy, and I feel more like a collaborator than a patient with her.

What is Parkinson's Disease?
PD is an incurable, progressive, neurodegenerative movement disorder caused by the death of the brain cells that make dopamine. Since dopamine is required to execute muscle movement, the disease is neurological, but it manifests in the failure of your muscles to move properly.

The four symptoms used in diagnosis per CDC guidelines are: tremor; stiff muscles; slow, slug-like movement (bradykinesia); and balance issues. I have the first three. Additional symptoms can be vast and varied, depending on which of your muscles rebel most prominently and it what way, as well as what medications you take. Every PWP (person with Parkinson's) is different.

My PD symptoms, in addition to tremor, stiffness, and bradykinesia:

constipation (bowels are muscles)

vision problems (eyes are muscles)

shallow breathing (the diaphragm that pumps your lungs is a muscle)

vocal tension/strain (vocal cords are muscles)

left foot toe curling and ankle inversion (you get the idea)

insomnia (because of all the other problems)

memory/cognition sluggishness (because neurotransmitters; or, insomnia + ADHD?)

Symptoms caused by medication:

constipation (double whammy)

insomnia (another double whammy)

dry mouth

dry eyes

dyskinesia (involuntary motion) from too much supplemental dopamine

More than half of my official diagnoses are actually symptoms of the umbrella PD diagnosis. And I take so many meds for the side effects as well as primary conditions that I have to use the margins on the form at the doctor's office.

MDS Visit
My MDS performs an assessment to calculate my Universal Parkinson's Disease Rating Scale (UPDRS) every appointment. She asks me to tap toes, tap my heels, walk down the hall, flip my hand up and down on my thigh, etc etc. For each motion she observes, she records a rating when she observes symptoms. The maximum score (worse case scenario) is 260. When I was first diagnosed and unmedicated in early 2022, my score was 28. I couldn't wash my own hair or brush my teeth. I can't imagine what it's like to be over 100, and I hope I never have to know. Yesterday's score (while fully medicated and "on", which, in PD lingo, means the meds are working well) was 8. I've been in single digits for about two years now, so the meds have been working and continue to work for now. The drug is called carbidopa-levodopa (or just levodopa or C/L). I call it a miracle drug, and I'm grateful for it.

So, all of that is good news.

Botox
The bad news is my dystonia is getting worse.

My vocal strain and toe curling/ankle twisting are both diagnosed as dystonia. Dystonia is technically a type of dyskinesia - meaning that it causes involuntary muscle movements - but it's more specific in that it's characterized by muscle contractions, and usually focused on specific muscles (in my case, muscles in my foot and head/neck.) Meanwhile, the dyskinesia we talk about in PD is usually caused by too much levodopa, and it looks like a dancing, swaying motion.

For my voice, I've been getting Botox injections in my larynx for over a year, every three months. We haven't pinned down the dose yet. The Botox works by relaxing (technically, paralyzing) the muscles, which means that if we inject too much, my vocal cords will be relaxed (paralyzed) too much, and I can't speak above a whisper. This last injection, the weak-and-breathy period was over five weeks, only leaving seven weeks til the next injection. So we're tweaking. By the time we get it right, my PD will probably progress. We're shooting at a moving target.

Although it's definitely an option, I don't want Botox in my foot. For one thing, I can't imagine what walking would be like if we overshoot the dose. Also, those injections are pricey, and if I have to choose between my voice and my foot, fix my voice, please!

Takeaways
Jessica and I discussed smoothing out the highs (which cause dyskinesia) and lows (which cause dystonia) in my dopamine levels. There's a pump now, but I already manage an insulin pump, and the levodopa pump has some problems with injection-site infections. So we settled on spreading my daily levodopa intake over more frequent, smaller doses, six times per day.

This ADHD girl has discovered the medication tracker in the Samsung Health app. I think it might actually be manageable. I just passed the 24-hour mark on the new 6x-per-day. Here's hoping it helps.

Bottoms up! It's levodopa time.