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

 

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s