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.
I tried yoga and acupuncture. With yoga, I had too many tremors to hold a pose, and I shook the needles right out when I had acupuncture. I also tried naturopathic remedies and reiki, to no avail.
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.
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Comments
Tabitha Hegenbart
My husband has fallen into a deep depression after failing to find the "silver bullet" cure. He was diagnosed 2 1/2 years ago. At the age of 55 now, he is struggling with executive function disorder as a symptom of his Parkinson's Disease. It has been so disheartening seeing him try and try and try to feel better. He has given up. I am heartbroken to see his changes in cognition. I am really sorry to hear you are looking for that magic too. My hope is that someday soon, there will be a real breakthrough and people will stop chasing after snake oil salesman. Blessings.
Chris Tay
Hi Christine,
I think you and I are on a similar path with the same frustrations. I was diagnosed with atypical Parkinson's in 2017. Part of the "Atypical" diagnosis is that I have never gotten any benefit from Dopamine therapy. So I am left on my own to discover something that works. My neurologists keep discouraging me (unintentionally) from new ideas I hear about. Exercise and Yoga plus PWR have been my staples for slowing progression but in the last 6 mos.my progression has been more rapid.
Jean mellano
Hi Christine, we have similar experiences. I was diagnosed with PD in 2015 . I too keep searching for the Holy Grail. It is wearing me down. I have tried B 1 protocol, red light therapy helmet, biokult (ps128 probiotic), mannitol and Hinz protocol. Nothing positively helped my symptoms. No side effects either. I wrote about some of these topics when I was a columnist for parkinsonsnewstoday. My column was slow is the new fast. I wish u luck in finding your holy grail, if u find it, LMK. As u probably have discovered by now (other than the fact there are many charlatans out there preying on our desperation) what works for some may not work for others
Christine Scheer
Hi Jean, I remember your column well! I think the holy grail really is exercise, so as long as I can move, I'll be pushing myself. All my best to you.
PAUL B STOLZ
You're not foolish, i am the fool. I stopped exercising. At least you tried something, i just am letting parkinsons kick my ass. THAT is foolish
Christine Scheer
It's never too late to get back on the exercise train! Just do it. You'll feel better for making the effort. Don't let Parkinson's win.
Barbara
Simply two suggestions: book #1. The Wounded Storyteller by Arthur W. Frank (collective portrait of chronic disease): #2. Parkinson’s Diva by Maria De Leon. Best wishes to you in your journey.
Christine Scheer
Thanks, I'll check them out!
Lewis Elbinger
Thank you, Christine, for this excellent article.
I am relatively new to the world of Parkinson's disease, but I share your belief that there are various ways to tread the path of self-healing.
Kathleen Karafonda
So very much my experience! Anxious to hear re your red light therapy! Bought a supply of mannitol but did not follow through; have ibs so you have saved me some guilt and bathrm incidences.
YOU HAVE MADE ME FEEL "NORMAL" IN THIS VERY ANORMAL DISEASE SCENARIO!
MANY THANKS!!!
Christine Scheer
It's nice to know we are not alone, right? Hang in there.
Arthur Kvarnstrom
I thought that I was the only person on the planet using this approach.
I'm now using using infrared red light therapy. Does it help? Who knows.
Thanks for sharing.
David Haley
Warm and appreciative greetings Christine. Inspired by your remarkable out-vestigations of how to feel better, I happily respond by how we humans are so lead toward the OUTER looking for aid in the search for PD relief, and in general approaches to improving life quality. This pressing to look and see OUTside greatly diminishes our awareness and IN-joyment of placing our consciousness at/IN our PRIME GROUND OF BEing HEART CENTER source of analog seamless one-piece peace…… free of mental pieces put together without the universal one piece feeling-attracting nature of Heart Center balance, harmony, synchronicity withIN Totality. Personally, I experience placing my focused awareness IN heart center, and being the feeling state of what I desire, and believing it is here, creates this magnetic attracting resultant.
If you are already aware of this, or treat this as irrelevant, I apologize for distracting your attention. May we all be All ways IN-LOVE loving all.
Shivarudraiah VS
Yes, well said sir. My experience for 10 years co-living with PD, now in stage 4, teaches me, 'don't be unconscious of being out-conscious, be IN-conscious'. Parkinson is my normal. No medication. Only meditation. Enjoy body-straining whatever possible. Do whatever, that makes you happy, Just do that. This is how I have lived thus far. Live as much possible for yourself TODAY. Do not be eager to live for tomorrow.
Fred Greenfield
Amazing.. your experdespirationience sounds exactly like mine..We are both seeking a magical cure out of despiration. Don't give up hope...something may come soon.
Carmen Latimer
Dear Christine,
Your story is so familiar. I was diagnosed 12 years ago at age 48. Over the years I've tried so many supplements, I've grown fava beans, listened to talks about light therapy etc. A fellow Parkie let me watch his weekly ( expensive) session with a healer who claimed to have healed her dad's PD by laying her hands on his legs.
The one thing that has helped me is exercise. I'm pretty sure spinning, boxing, dancing, walking has helped in slowing the progression. Living with PD is tough but we keep fighting to stay in the best possible shape until a cure is found.
Christine Scheer
I agree! Exercise is the key right now. We will be ready for that cure when it comes along.
Skip Shaputnic
You might find this Parkinson's UK report to be of interest Gut Bacteria Could Guard Against Parkinson’s
https://www.parkinsons.org.uk/news/gut-bacteria-could-guard-against-parkinsons It was published almost 4 years ago and I decided to give it a try after being able to find a source of the same probiotic that was used in the report, Bacillus subtilis. I've been taking it for over 3 years now. Has it helped? To be honest, the jury is still out, but it certainly looks promising. If you'd like more info please be in touch. Good luck to us all!
Robert
HI Everyone,
I don't have any pearls of wisdom to offer you, in fact this is my first time leaving a comment on any PD site at all. My reason for writing to all of you now, is to express my admiration at the courage and honesty in your posts,
I am now in my 15th year of PD, although was only diagnosed after 10 years. I had been happily living on a Desert Island for many years and as I am sure you can all relate; my first symptom was I lost my sense of smell, followed quite quickly by my loss of taste. The next thing to go was my ability to perform my daily guitar practise (I had been playing since I was 10). I still had all my muscle memory of which chords should come next in any progression, but my fingers refused to cooperate.
I'm sure you are all fed up with my "poor me" story by now, so I'll end by just saying I have atypical parkinsonism (the MSA subtype), am confined to a wheelchair, and require 24-hour care. I am living in London and take 400mg of carbidopa/levodopa x 3 times a day, and a bunch of psych drugs etc.
Goodnight - Rob,