A Parkinson’s Detective Story

In early October, as I wrote last week, my right-hand tremor became noticeably more frequent. The Apple Watch app I use to track it confirmed my perception: over the course of ten days, shaking time gradually increased from a pretty steady average of 22 minutes a day to 43 minutes.

It seemed as if after more than a year of stability, my progressive disease had begun to progress.

By coincidence, the every-six-month checkup with my neurologist was coming, so I decided to put her detective skills to the test. What was going on?

She questioned me about my other symptoms, put me through a variety of physical tests, and then asked me if there’d been any changes in my life recently. As it happened, there’d been two:

1. I’d added a strength and conditioning class two days a week at the beginning of October.

2. At about the same time, I’d started weekly ping pong lessons, with a couple of practice sessions each week.

The doc told me she saw no other signs of changes to my symptoms.

Her theory: my recent additional physical activity has ramped up my metabolism, causing me to process the carbidopa/levadopa faster. If true, this is causing the drug to last for a shorter period. The tremor is the result.

If she is correct, taking the meds more often will send my tremor numbers back down.

The test of her theory began this week. I went from taking meds three times a day (roughly every 5-6 hours) to four times a day (every 4 hours.)

It’s too early to draw conclusions, but initial signs are positive.

Out of all the possible reasons for the increased tremor, “You’re exercising a lot” is my favorite hypothesis. There’s an easy fix, and it means that my Parkinson’s may not be progressing after all. I ‘m hoping it turns out to be the right answer.

Bonus: with a weekly schedule of Rock Steady Boxing, tai chi, strength/conditioning, and ping pong, I will soon have the body of a Greek god.

Home Remedy of the Week

Disclaimer: As a non-medical-professional, I am not recommending that you use this product or don’t use it. Make your own decision, at your own risk.

A loyal Shakin’ Street reader recently sent me an article about cinnamon. The short version:

Neurological scientists at Rush University Medical Center have found that using cinnamon, a common food spice and flavoring material, can reverse the biomechanical, cellular and anatomical changes that occur in the brains of mice with Parkinson’s disease (PD). The results of the study were recently published in the June 20 issue of the Journal of Neuroimmune Pharmacology.

While there are no definitive studies demonstrating that cinnamon can halt or reverse Parkinson’s progression in humans, it’s an attractive idea — you can buy it at the supermarket, it’s probably reasonably safe (note: it is possible to consume too much of the stuff, and there have been recalls of some brands because of elevated lead content.)

UPDATE 10/23/24: Several readers contacted me to point out there are two types of cinnamon readily available in your local supermarket: Ceylon and Cassia. Each has its own properties, benefits, and risks if you decide to make cinnamon a part of your regimen. Do your research.

I’m leaning toward giving cinnamon a try. Next week:

  • I will sprinkle cinnamon on blueberries, which I eat because they might ward off dementia.
  • The blueberries will sit on top of a bowl of Grape Nuts, which I eat because they have a lot of fiber and very little sugar.
  • Poured on top of the whole shebang: soy milk, which I drink in an effort to avoid dairy products, which have been linked to the risk and progression of Parkinson’s disease.

Or maybe I’ll have some cold pizza.

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Bonus For Those Who Read to the Bottom

BARNYARD EDITION

Some of pop music’s greatest hits, performed by animals or facsimiles.

10 responses to “A Parkinson’s Detective Story”

  1. kimberlyfeaeaf8899 Avatar
    kimberlyfeaeaf8899

    Great Read. Here is another great chicken video. No music just crazy donkey with rubber chicken a fan sent to him. Very funny. https://youtu.be/NBdhNL8WFe4?si=1a1n981o3Y5ORNJt

    Here’s to no progression, keep moving Phil!

    Like

    1. shakinstreet.com Avatar

      Thank you, Kimberly — love the donkey video. I wish I could generate that kind of enthusiasm!

      Like

  2. mmmeow60 Avatar

    Wow! I wish other things were as easy to figure out! Keep up the good progress 💪…. One thing I’ve learned about cinnamon is that CEYLON cinnamon has the most health benefits without the risk of too much affecting our bodies negatively. It’s not as “spicy” as cassia cinnamon, but better for taking in larger doses, consistently. I use Frontier Co-op Fair Trade Ceylon Cinnamon.

    Like

    1. shakinstreet.com Avatar

      Thanks, Cat. The writer of the article I linked to also seemed to suggest Ceylon was the way to go, although he didn’t come out and say it. Ceylon is what I will buy if I decide to give this a go, but I deliberately avoided making a recommendation in my post — I haven’t done the research and don’t feel comfortable steering readers on the subject.

      Do you use cinnamon for health benefits, or just because you like it?

      Like

      1. mmmeow60 Avatar

        Ok, I’ll just steer everybody for you 🤣 Seriously, everyone needs to vet information themselves. I like it ok, but I heard about the health benefits such as blood sugar control, etc., and just decided to add to my steel-cut oatmeal every day along with all the other junk I put in it! If I’m baking and need that spicy, sweet cinnamon flavor, I’ll use the cassia…but for every day, it’s Ceylon. In my oats I have 1 cut up apple, almond butter, hemp, flax and chia seeds (I keep a mix in the fridge , a little soy milk, blueberries and the cinnamon 😁

        Liked by 1 person

  3. Gail Avatar
    Gail

    I have heard good things about cinnamon (Ceylon), grape nuts (I use this when I go to donate blood and my iron is low. I can go back the next day and it is perfectly normal), blueberries (to aid in my cognitive ablilities), and I understand honey is a miracle worker (I use this when ever I feel a cold coming on). Have you read anything about honey? All this should make for a really good breakfast!

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    1. shakinstreet.com Avatar

      I’ve read that honey contains flavonoids and polyphenols, which may be beneficial for neurological diseases. There was a study published in 2022 that seemed to indicate that honey had potential for fighting Alzheimer’s and Parkinson’s. The article had a lot of big words. I’ll link it here in case you want to plow through it.

      https://pmc.ncbi.nlm.nih.gov/articles/PMC9143627/

      Like

      1. Gail Avatar
        Gail

        Well, that is enough to make me want to eat honey every day! (I didn’t get through the whole article, but skimmed it pretty well.)

        Liked by 1 person

  4. Dale Halon Avatar
    Dale Halon

    thanks for the detective story. I’m newly (2 months) diagnosed with minor but annoying symptoms. Main physical one is tremors in my hands and sometimes my entire body.

    I’m an avid gym rat. Pickle ball 2-3 times per week, strength work 2-3 times, cardio on machines and occasional walk. I got put in C/L and have another appointment next week as my dose seems to wear off pretty quickly on hard workout days. Dr wants to up my dosage to use 25/100 to replace 10/100. I’m a little Leary, however as my motor symptoms aren’t that bad. Any ideas?

    Like

    1. shakinstreet.com Avatar

      Dale, I’m not a doctor and can’t give you medical advice. Having said that, it sounds like your situation is similar to mine, and you might benefit from some experimenting. Your doctor’s idea to increase the dose sounds like it makes sense, and could be worth a try. If you wind up with side effects, scale back.

      I’ve been on 25/100 from day one. Originally my neurologist put me on one pill, three times a day. After six months, she suggested doubling the dose to two pills, three times a day. Doubling the dose had a positive effect on my symptoms, but it also caused some dyskinesia, so we dialed it back to 1.5 pills, three times a day. Most of the dyskinesia went away when I scaled back. When my tremor became more prominent a few weeks ago, we stayed with 1.5 pills, but increased the frequency to four times a day.

      That seems to be the sweet spot for me. The tremor has receded, and I am not having a problem with dyskinesia.

      Unfortunately – and this frustrates the heck out of me – there is no “standard” C/L regimen. Everybody is different, and you just have to experiment until you find something that works best for you.

      I hope this helps. Good luck.

      Like

Leave a comment

I’m Phil Bernstein

I was diagnosed with Parkinson’s Disease on May 25, 2023. At the time, I was only vaguely aware of Parkinson’s — primarily from articles in People about Michael J. Fox. And I didn’t know anyone with the disease.

Now, I know a lot more about the illness, and I’ve joined the Parkinson’s community in my hometown of Portland, Oregon.

I’ve found that writing helps me think through challenges, and this illness definitely qualifies as a challenge. I’ve started Shakin’ Street to help me think through the various obstacles, tools, and resources that a newly-diagnosed Parkinson’s patient encounters along the way.

I hope some of these posts help you address and tackle your own challenges.

Let’s connect