The Shaking Shoelace — a Technique for a Faster Diagnosis?

Has your car ever made a strange noise that you were unable to duplicate when you brought it to the mechanic?

That was me and my brand-new tremor in 2021.

The tremor first appeared, intermittently, in my right index finger. I ignored it for a couple of weeks, assuming it would go away.

Eventually, I made an appointment at my primary care doctor’s office. My regular physician was on vacation, the fill-in guy was not particularly enthusiastic about his job, and my tremor decided not to happen in front of Dr. Cranky.

After a couple of desultory reflex/mobility tests, The Grumpy GP sighed, rolled his eyes, told me there was nothing to worry about and sent me away. It was another six months before I had the guts to go back to my regular doc, and two years before Parkinson’s was diagnosed.

I wish I’d read about The Shaking Shoelace before the appointment. The article, published several years ago in the Journal of Parkinson’s Disease, tells the story of a 59-year-old patient with a very light foot tremor.

The tremor could not be seen when looking at the naked foot. But when the patient wore shoes, the neurologist could clearly see a shoelace vibrating.

You can compare the bare foot to the shoelace on video here.

I don’t know if this would’ve convinced Dr. Jerkface that I had something in 2021. My tremor was in my finger, not my foot but maybe I could have stuck my hand in a shoe and made a lace shake. Too late now.

If you or a loved one is experiencing a very light tremor, it might be worth a try.

The PD GENEration Study

Last November, I had my blood drawn for the Parkinson’s Foundation’s PD GENEration study. Among other goals, the study looks for variants (formerly known as “mutations”) in 7 genes. The variants, as I understand this, indicate a genetic predisposition to get Parkinson’s Disease.

Since my mother also has Parkinson’s, I assumed I’d have some of the variants. As my genetic counseling session approached, I imagined the emotional conversations I’d have with my kids — and maybe my sister, nieces and nephews — about the implications for them.

My counseling session was last week, and — long story short — I don’t have any of the variants for those seven genes. There is no evidence, based on current scientific knowledge, that my version of Parkinson’s is hereditary.

I was relieved and, to be candid, a little disappointed. For me, a day without drama is like a day without sunshine.

As of the most recent reporting, 20,000 people have participated in the study. 13% of them have a genetic variant in one or more of the “PD risk” genes.

The Foundation is still accepting new patients in the study. According to the website, here are the potential benefits:

By joining the PD GENEration study, you can discover your connection to the disease, while helping map the future of tomorrow’s breakthroughs. Benefits of participating include:

  • Improve management of your disease
  • Learn about your family’s risk for Parkinson’s
  • Increase understanding of the biology behind the disease
  • Accelerate clinical trial enrollment
  • Contribute to improved care and treatment for you and future generations

You can find out more about the study and enroll here.

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Bonus For Those Who Read To The Bottom

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Roberta Flack died earlier this week at the age of 88. Here is the original version of one of her biggest hits. Recorded in 1971, released in 1972.

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James Woods does some very interesting things with “Billie Jean” and a ukulele.

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I often get emails from readers asking if I’ve ever heard a Led Zeppelin song played on the Japanese shamisen. Yes, it turns out — I have.

2 responses to “The Shaking Shoelace — a Technique for a Faster Diagnosis?”

  1. mmmeow60 Avatar

    So, I guess you can have Parkinson’s without the gene? Would you say Parkinson’s is rare? Common? I love the last song 😁

    Like

    1. shakinstreet.com Avatar

      As I understand things (and God knows I’m not a scientist), everybody has the genes. With some people, the genes have mutations (now known as “variants”) which make those individuals more likely to get Parkinson’s. I have the genes, but not the variants.

      I don’t know whether you can consider Parkinson’s “rare.” There are about 1 million people in the United States who have been diagnosed with the disease, about 10 million worldwide, and an unknown number of people who have it but have not been diagnosed yet. According to the numbers generated by the PDgeneRATION study, about 13% of us have genetic mutations that make us more likely to get Parkinson’s.

      Liked by 1 person

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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.

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