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La Bene Vita

by Brandiwyn🎶

Rated: 18+ · Book · Personal · #1411600

The Good Life.

You Are Welcome Here
Life is good. Let's share it.

New Year, New Strategy
For 2026, I launched a weekly topic rotation designed to help me stay d i s c i p l i n e d while ensuring that you, the reader, always know what to expect. Unfortunately, I have yet to acquire a million followers

and gain official WDC "influencer" status, and I often find myself seduced by whimsy. Thus, my blogging strategy continues to evolve.

So, What Can I Expect?
I'm glad you asked. For now, until whimsy strikes again, here's what you can expect (updated March 2026):

Weekly Theme Posts

Music & music education

The art and business of writing

Owning & managing a small business

Science & technology

Parkinson's disease, type 1 diabetes, and other medical topics

Personal News & Updates

Health news

Family, work and leisure

The Occasional Rant
Although I try to post rants at "What the Fork?" (and you should, too!)

Newly Written Works
When I check off completed writing goals, I'll share the fruits of those labors, if applicable.

Weekly Goals & Progress
I'll establish work and writing goals every Monday and touch base throughout the week.

Comments · Tags ·

10 Most Recent Blog Comments:

Brandiwyn🎶

about 3 hours ago
In response to "Parkinson's Disease - Spring 2026"

PD research is very well funded, so I'm sure opportunities are there. I have a piano student, Lily. She's 16, but she was 5 when her mom enrolled her, so I've been her teacher more than a decade. Her mom is a doctor, and Lily has decided she wants to study neurology. She knows about my diagnosis - all my kiddos do, so they understand why my voice doesn't work sometimes, why I can't play the instruments I used to, why I drop everything to take meds, etc. So she was super excited to tell me that when she went to Neurology Summer Camp (!!!!!!!!!!), she got to watch a DBS procedure on a Parkinson's patient, live. (!!!!!!!!) This was probably two years ago, so she was 14 or 15 at the time.

For those who don't know, DBS = Deep Brain Stimulation. Until very recently, the procedure could only be performed while the patient is awake. They screw your head into a halo that holds your head still, then implant an electrode in your brain. Some patients require two implants (one for each side, two separate surgeries), and either way, you have to have yet another surgery where they implant the battery in your chest. Sounds like fun, amiright?

In case you're wondering, my MDS said today that I'm the PERFECT CANDIDATE for DBS because I respond so well to levodopa. I'm like.......... thank you? The good news is, there's an option where they knock you out now.

2 Like

Ѧͷͷΐ

about 3 hours ago
In response to "Parkinson's Disease - Spring 2026"

Brandiwyn🎶

Cool! Yeah, a PhD in Neurobiology. I'm a research scientist / data scientist, worked in a lab at a research institute. Very niche, I know. I'm actually trying (and failing) to break out of the academic research trap. Unless you're a tenured professor, it's a very poor career choice. And, turns out, not terribly useful in the real world. Who knew?

But yeah, I really did enjoy the subject and the research. I'd like to go in a more clinical direction so I can actually help people with diseases like Parkinson's. Especially when I read first hand accounts like yours and Carol St. Ann 20yrs (06-26)

2 Like

Brandiwyn🎶

about 4 hours ago
In response to "Parkinson's Disease - Spring 2026"

Ѧͷͷΐ

- That's awesome, and I'm very interested in your project. I speak science and data analysis, lol. My degree was chemical engineering. Did you earn a degree in Neurobiology? What do you do professionally?

Brandiwyn🎶

about 4 hours ago
In response to "Parkinson's Disease - Spring 2026"

Carol St. Ann 20yrs (06-26)

- I'm sorry to hear that. I was diagnosed four years ago, but misdiagnosed with Essential Tremor three years before that, and I'd had a mild tremor for a few years at that point. So I estimate I've had symptoms for ten years. Please let me know if you have questions, any time.

Vocally, I started to slip under pitch. Now, I can look back and realize my breathing was getting shallower. My advice is to keep singing as much as possible, and add breathing exercises to your daily routine. I used my voice less and less because it didn't sound good anymore, which was depressing, but by the time I was diagnosed with laryngeal dystonia and prescribed Botox treatments, I had also developed vocal fold atrophy.

Did the neurologist who diagnosed you do a UPDRS evaluation on you? What tests or symptoms did they identify to support the diagnosis? Are you doing anything to treat it yet?

If you're on Facebook, this is my favorite group: https://www.facebook.com/groups/parkinsonsfightclub

And if you're allergic to exercise like I am, GET OVER IT, pronto. Exercise is the only thing proven to slow or stop progression. If your symptoms are mild now, exercise is how you can keep it that way. 30 minutes, 5x per week, elevated heart rate. If you are allergic, I wouldn't mind an exercise accountability partner. I've been lax over the winter. And by lax, I mean lazy.

2 Like

Carol St. Ann 20yrs (06-26)

about 4 hours ago
In response to "Parkinson's Disease - Spring 2026"

Michelle, I've recently been diagnosed with Parkinson's and am only starting my journey. I am a singer, and my voice issue plus a faint, very faint morning internal tremor is what sent me to the doctor for more than my yearly physical.

2 Like

Ѧͷͷΐ

about 5 hours ago
In response to "Parkinson's Disease - Spring 2026"

That is good news! 8 is a great score. I actually know quite a bit about Parkinson's from my studies in Neurobiology. I even did a project where I created a data model to predict a patient's UPDRS using vocal metrics from noninvasive home recordings. Since, as you said, it's primary a motor disorder and the vocal chords are a muscle. How about that for a coincidence!

(The model didn't actually work THAT well, but a good concept.)

1 Like

Detective

a day ago
In response to "Netflix Reviews: Nuremberg, The Dinosaurs"

I'm going to need to check The Dinosaurs out. I love dinosaurs and enjoy watching dinosaur documentaries. Thanks for the recommendation.

Brandiwyn🎶

Mar 6, 2026 at 3:58pm
In response to "Using Google Ads to Drive Website/Blog Traffic"

Storm Machine

- no, because ironically, we don't teach left-handed lessons. Both hands are required to play all the instruments so we just start training the muscles to do their respective jobs right from the start. The only mention of left-handedness in the blog I think is Taylor Swift's bio. But because it's Taylor Swift, that page gets a lot of traffic.

1 Like

Storm Machine

Mar 6, 2026 at 3:41pm
In response to "Using Google Ads to Drive Website/Blog Traffic"

I have no idea if Jim Carrey is left handed. Definitely haven't blogged about that either. Why do so many left hand queries end up in your blog? Are you the left hand of music?

Should we blog about lefty music lessons to lean into it?

1 Like

Dawn Embers

Mar 5, 2026 at 6:39pm
In response to "One Review to Go!"

You can do it!

I think I have another 3 or 4 days left before I will be able to post for this particular challenge. It's a good one.

March 10, 2026 at 3:59pm

#1110336

Parkinson's Disease - Spring 2026

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.