Make your voice heard. A study for all People with Parkinson’s

Do not let what you cannot do interfere with what you can do.

John Wooden

One of the most important thing that we, as People with Parkinson’s can do, is to take part in clinical trials.  There are many trials that have very specific criteria for participants.  And often, these trials do not get enough people to participate in order to complete the study because they are so specific.

But there is one trial that anyone who is reading this blog can participate in.  The study is being conducted by Laurie K Mischley, ND, PhD, MPH, at the Bastyr University Research Institute and is titled Complementary & Alternative (CAM) Therapies in Parkinson’s Disease.  You do not need to leave your home.  You do not have to meet with a doctor, take medications or any kind of tests.  All you need is a computer with on-line access, an email address and basic computer literacy.  You do not need to use CAM therapies to participate.

I spoke to Dr. Mischley at the WPC about the study.  The goal of this PD study is to collect as much data as possible over a five-year period with the hope of finding dietary and lifestyle factors associated with a slower disease progression.  The theory behind the study is that of “Positive Deviance”

“Positive Deviance is based on the observation that in every community there are certain individuals or groups (the positive deviants), whose uncommon but successful behaviors or strategies enable them to find better solutions to a problem than their peers. These individuals or groups have access to exactly the same resources and face the same challenges and obstacles as their peers.

The Positive Deviance approach is a strength-based, problem-solving approach for behavior and social change. The approach enables the community to discover existing solutions to complex problems within the community.” *

I have been involved in this study for about 2 years, so it was a pleasure to meet Dr. Mischley to talk about what she is doing.  She told me that so many studies look at what happens before a person is diagnosed with PD.  Her study seeks to look at PwP’s from diagnosis forward to see why some people do better than others.

Every six months I get an email from Dr. Mischley with 2 questionaires to complete.  It does not take more than 90 minutes to complete.  If you are interested in participating or would like more information, go to the website at http://www.CAMCarePD.bastyr.edu.

www.positivedeviance.org

 

I’m Sharon

Welcome to Twitchy Woman.

I started Twitchy Woman as a way to exchange ideas and solutions with other whose lives have been affected. It has been recognized by Everyday Health, Healthline, Stanford University and more as one of the top Parkinson’s blogs to follow.

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Sunday, May 31 @ 1:00 PM ET

Kristine Meldrum returns to talk about her new book for trainers. How to Build a PD Exercise Cocktail Plan: A Professional’s Companion Guidebook to Parkinson’s: How to Reduce Symptoms Through Exercise. Kristine has generously donated 6 books to give away that day (3 of each). Please encourage your trainers/physical therapists to join us for this important meeting.

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Clinical Trials Corner

SEPTEMBER 2025

I’ve been hesitant to feature new clinical trials as a few that I had on my list to include in future columns have either been removed from the site or marked as withdrawn. Keeping my fingers crossed that the trials I feature continue to recruit and maintain their funding. Click here for the rest of the report from Jen


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