A Survey of Supplement Use for Treatment of Parkinson’s Disease (Please Reply)

“Latest survey shows that 3 out of 4 people make up 75% of the world’s population.” Stephen Hawking

“Oh! that you could turn your eyes towards the napes of your necks, and make but an interior survey of your good selves.” William Shakespeare

Introduction: A mainstay of therapy for treating the neurodegenerative disorder Parkinson’s is a traditional medical approach with the care of a Neurologist or Movement Disorder Specialist. None of these approved therapeutic modalities have slowed the disorder’s progression rate.

Many of us, People-with-Parkinson’s (PwP) take different supplements to treat Parkinson’s. We hope that:

1. We are being proactive.
2. We are trying to keep the brain healthy with the remaining dopaminergic neurons.
3. We are doing what we think might slow down the disease progression.

Ultimately, PwP are taking supplements with the intent that they may slow the disease progression rate and improve our quality-of-life.

Google Form: I am interested in making a master list compiling the various supplements we are currently taking. Your Complementary & Alternative Medicine (CAM) and over-the-counter (OTC) lists may describe some common themes. Furthermore, some of these supplements may be derived from Ayurvedic medicine or other disciplines of medicine. Finally, some lists may be based on your reading and research.

Here is the URL for the Google Form: https://forms.gle/8oB7Vd6W35z5oeYK8
(If necessary, please cut and paste the URL into the address bar of your browser)

NOTE: Alternatively, you can skip the survey and email me your Supplement list at frank.church@gmail.com

There are three parts to the Google Form:
(Part 1) Traditional medical therapy. 

(Part 2) A list of your supplements that would be considered Complementary &  Alternative Medicine (CAM) and those purchased Over-the-Counter (OTC).

Please list these substances in a pre-rearranged order- including the supplement, dose size, frequency of taking the supplement, reported action of supplement, and source.

Here is an example:
Magnesium L-Threonate; 500 mg capsule; morning and evening; Supports brain/nerve health; Double Wood Supplements (from Amazon.com).

NOTE: If you just want to name to supplement and be done with it, that is fine too.

There is space for adding 15 supplements. However, if you need space for more than 15 supplements, please add the remaining supplements at the end of the form (in the “Additional Comments”).

(Part 3) Exercise Strategy and Mind-Body Work.

Name and Email Address (Optional): Please note that you do not have to list your name and email (that is optional).  Therefore, unless you place this information, your contribution will be anonymous.

Overall Goal of the Survey:  First, we compile a list of the supplements we are taking, contributing to the education about the various supplements PwP are taking. Second, the results would be published in some format if we get enough contributions from the readers/followers of this blog. For example, we could submit these results to a peer-reviewed journal article relating to what we believe is essential for treating our disorder. Or, at the least, it would be a complete blog post highlighting these choices of supplements. Either way, if we get the data, it would be interesting.

You are also welcome to forward the URL below to others PwP that you feel would want to describe their supplement list. I realize this might take some time to fill out the form. However, please feel like you are contributing to the broader science community regarding Parkinson’s disease and how we all feel supplements might be helping control progression and, in general, our quality-of-life.

Thank you!
Frank C. Church, PhD
Journey with Parkinson’s

“A recent survey stated that the average person’s greatest fear is having to give a speech in public. Somehow this ranked even higher than death which was third on the list. So, you’re telling me that at a funeral, most people would rather be the guy in the coffin than have to stand up and give a eulogy.” Jerry Seinfeld

Cover photo Image by Frank C. Church