What the perpetual hunt for a Parkinson’s ‘cure’ looks like
Sometimes when we just want to feel better we'll try anything
“How could I be so stupid?”
I was berating myself for buying a ridiculous book that promised to cure Parkinson’s disease. The book was one of the first purchases I made in a long line of failed attempts to feel better and take control of my life after I was diagnosed with Parkinson’s disease in 2015. At the time, my oldest daughter said, “You aren’t stupid. You are desperate. This author is preying on desperate people.”
I was looking — and still am — for that silver bullet, that magic pill, that secret something that will make me feel better and happier, with little effort.
Fool me twice
I even once went to a clinic where the “doctor” claimed he could probably cure me. He told me he had a special gift of touch and had been able to help many people. Serious bunk.
He had me lie face down on the patient bed (don’t worry, I kept my clothes on), and then he lightly touched the back of my neck and the base of my spine — once. That was it. For half an hour, I just lay there, wondering if anything else was going to happen. I don’t know what he was doing, but at one point, I thought he might be rifling through my purse. I left feeling very foolish.
Then I heard about the over-the-counter supplement mannitol, a white powder that looks like cornstarch. At the time, I had read several reports of people feeling better after taking it, so I gave it a go. I took a tablespoon daily for about three months, and I did have some excellent days. One day, I was tremor-free.
The downside was that I had to stay within running distance of the bathroom! This sprint was a bit tricky, and after three months, I was so stressed with the bathroom situation that I gave up. Did I think it was a cure? Not for me.
When I had deep brain stimulation in 2021, I thought that would be the end of looking for alternative cures. But in the past few months, I’ve felt the urge to feel even better and have more energy.
Next stop: red light therapy! I purchased a small device that I’m supposed to use every day for about 10 minutes. Allegedly, it helps people with Parkinson’s.
Does it work? I have no idea. I would have a better idea if I remembered to use it regularly. I will attend a conference next week that discusses light therapy, so I’m hoping that the presenter has good scientific data that will inspire me to use it regularly.
My most recent purchase is probiotics, which are reported to be good for those of us with Parkinson’s. I live in Canada, and I had to pay the astronomical price of the exchange on the U.S. dollar, so each probiotic pill is worth about CA$1.50 ($1.09). I’ve been taking these regularly for about four months. Do I feel better? That’s to be determined. Am I scared to stop taking them? Absolutely!
These days, I don’t know what “better” feels like. I’m confident that it’s not easy to achieve and that there is no magic pill. So I keep running, spinning, boxing, walking, and feeling grateful that my body hasn’t wholly betrayed me despite the ups and downs of Parkinson’s disease.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.