Shakin' Street — A Parkinson's Blog

I was raised by two parents who believed if you were sick, you saw a DOCTOR. A “DOCTOR” was someone who’d been to Medical School and had graduated with a Medical Degree.

A PhD wasn’t a DOCTOR. A chiropractor wasn’t a DOCTOR. A naturopath wasn’t a DOCTOR. These principles were driven into my head from an early age.

For my entire adult life, I’ve handled health issues the same way. Over the years, I’ve seen cardiologists and gastroenterologists. I’ve had surgery and taken (and continue to take) pills prescribed by DOCTORS. This approach worked pretty well.

Until I got Parkinson’s Disease.

DOCTORS don’t know what causes Parkinson’s. They don’t know how to cure it, or prevent it, or stop it from progressing. Over a million Americans have the disease, and we’re all just winging it.

Which is why I found myself at a B1/Thiamine Therapy seminar on a recent Saturday morning, surrounded by other smart PWP’s impatiently looking for answers.

The seminar leader wasn’t a DOCTOR, or a nurse, or a medical professional of any kind. She was an ordinary woman with Young Onset Parkinson’s who’d decided to find another way to tackle the illness.

Dissatisfied with the results she was getting from the traditional approach, she chose to do her own research and follow her own path.

She’d read books, done internet research, joined online communities, and made her own decision. And now, once or twice a week, she injects herself with thiamine she purchases from a pharmacy in Canada.

She is very happy with the results, reporting a significant and consistent reduction in her symptoms.

A note before I continue: I am not endorsing B1 therapy. While there have been some promising small studies, We don’t yet have conclusive scientific evidence that it works. I haven’t tried it. Also, I’m not a DOCTOR.

The presentation I attended is part of a movement author Susannah Fox describes in her book Rebel Health. Patients, loved ones, and others are taking matters into their own hands, communicating, offering advice and experimenting outside the boundaries and supervision of the medical establishment.

In her book, Fox tells the story of the #WeAreNotWaiting diabetes community, and quotes their manifesto:

• #WeAreNotWaiting to bridge disconnected data islands.
• #WeAreNotWaiting for competitors to cooperate.
• #WeAreNotWaiting for regulators to regulate.
•#WeAreNotWaiting for device manufacturers to innovate.
• #WeAreNotWaiting for payers to pay.
•#WeAreNotWaiting for others to decide if, when, and how we access and use data from our own bodies.
•#WeAreNotWaiting to build applications that focus on design and usability.
•#WeAreNotWaiting to compel device makers to publish their data protocols.
• #WeAreNotWaiting to make it easier to get data off of devices.
• #WeAreNotWaiting for the cure.

Many of us with Parkinson’s have taken a similar tack. In books, in blogs, on social media, and the Turnto app, we’re comparing notes, experimenting with different supplements and medications, and sharing advice.

Facebook has several Parkinson’s discussion groups; a private B1 Therapy group has almost 12,000 members. While not all of them are actively trying the approach (some may have signed up just to learn more), it looks like there may be hundreds, if not thousands, of “mini clinical trials” happening at any given time.

Results appear to be mixed.

• Some people report significant, long-lasting improvements to their symptoms.
• Some got good initial results, followed by a return to their previous condition.
• Some people got better, but have wound up worse
• There is no agreed-upon standard dose. Too little, and you don’t get results. Too much, and your PD symptoms return with a vengeance. “Too little” and “too much” are different for each person.

This shows the pros and cons of the Rebel Health approach — B1 appears to have promise, but the data is lacking. The hope is that all of these mini-trials will give conventional researchers information they can use in more robust studies.

Not long ago I stumbled onto Fred Phillips’ My Journey With Parkinson’s blog. A retired martial arts instructor and spiritual teacher, Phillips was diagnosed in 2008. He has an unusual theory of what caused his Parkinson’s — a childhood filled with fear and shame, followed by a very stressful early-adulthood..

As a one-man Rebel Health gang, he has mostly treated the disease “holistically.” This very long post describes his journey.

It is both fascinating and exhausting to read. The sheer number of things he’s tried is beyond impressive.

Massage therapy, qi gong, the fruit diet, the Keto diet, vitamin D, vitamin B12, krill oil… the list goes on and on. And on.

I don’t mean to make light of this. Phillips takes Parkinson’s seriously, and is willing to try almost anything that might have a chance to fix it. He’s encountered several people who have seemed to reverse the course of the disease, and tried to implement their approaches.

Over time, his symptoms have gotten better. And then worse. Then better. Then worse.

By the end of the article, it’s possible to conclude that he’s wasted a colossal amount of time and money, ending up with what most of us have: a relentlessly progressive disease that will not be defeated.

It’s also possible to share his belief that he’s getting closer and closer to a breakthrough.

Me? For the moment, I’m sticking with my DOCTOR-approved regimen of exercise and medication, which seems to be working for me.

But I’m loosening up a bit. I’m trying to implement naturopath Laurie Mischley’s PRO diet, and watching her online lectures in Parkinson’s School.

And I reserve the right to implement B1 Therapy, or anything else — approved or unapproved — if the stuff I’m doing stops working.

Nobody know anything, as William Goldman said. We’re all just winging it.

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BONUS FOR THOSE WHO READ TO THE BOTTOM

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Kenny Rogers/Dolly Parton’s romantic hit “Islands In the Stream”… reimagined.

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From the I Had No Idea Desk: Apparently, Japan has a small but thriving bluegrass scene. Redbull’s playing is top-knotch, and their accents are charming.