MSA and Parkinson’s Disease Resources

Multiple System Atrophy Information:

Multiple System Atrophy Coalition

       Defeat MSA – supporting education, awareness, and research

Great video of a presentation by a panel of subspecialty experts given at the MSA 2018 National Conference on MSA symptoms and their control

MSA general information YouTube Video – Dr. Karen Thomas

MSA general information and symptomatic treatment YouTube Video

MSA Public Facebook Group

       Brief YouTube Video on treatments (or lack thereof) and research

Also see the exercise information below listed for Parkinson’s Disease as we found them very helpful for my husband’s MSA symptoms

Parkinson’s Disease Resources:

Parkinson’s Foundation (lots of great info including early signs and symptoms)

Michael J. Fox Foundation (lots of great info, research, and research trial database)

Neuro Challenge Foundation in Sarasota, FL offers amazing resources for those who suffer from Parkinson’s Disease and MSA and other neurodegenerative diseases:

Website:  Neuro Challenge Foundation

Parkinson’s Disease Information Guide:  Free Downloadable Resource Guide

Annual Parkinson’s Informational Conference:  2019 Parkinson’s Expo

Parkinson’s Place in Sarasota, FL offers great exercise, support, and motivational programs daily

Peddling for Parkinson’s is offered in several locations around Sarasota and in many YMCA’s across the country.   It is a specialized exercise program that research has shown to mitigate symptoms for many people with PD.  Larry enjoyed it very much until his back got too painful to sit on the stationary bicycles.  Now he occasionally rides a three wheel recumbent bicycle around the neighborhood

LSVT BIG is a specialized exercise program to help with the movement and gait issues of Parkinson’s Disease and other related neurological diseases. You have to find a physical therapist who has been certified in this specific program.   Larry did this and it was definitely helpful in flexibility, balance, walking, and getting up and down from chairs.  It was 4 hour long sessions a week for 4 weeks.  He also did a refresher program several years later which was fewer sessions but also had a positive benefit.  We did the follow up exercises at home daily until he could no longer do the standing or walking ones.  We still do some of the exercises even now to get him moving in a chair.

LSVT LOUD is another specialized program to help with speech (find a certified speech therapist) and Larry did this several times as well.  Like BIG, it consisted of 4 hour long sessions a week for 4 weeks the first time.  He did the shorter refresher program several times, and continued some of the daily home exercises.  As these neurological diseases often decrease the person’s ability to hear the changes in their own speech, it was hard for Larry to hear the benefit of doing the exercises.  But I heard the benefit, as did our friends.  He was much clearer and his volume improved enough to hear him in normal settings.  Since he didn’t hear the difference, however, it was difficult for him to be motivated to do the daily practicing.  Plus even when he did them, he really needed me there with him to give him volume feedback as we never found a satisfactory decibel measuring program.

Davis Phinney Foundation for Parkinson’s – a non-profit organization that has gathered lots and lots of resources for living well with Parkinson’s Disease and funds early stages of important research.  It was founded by an Olympic and Tour de France  cyclist who was diagnosed with early onset Parkinson’s.  They offer a free book called Every Victory Counts that you can have mailed to you or download with lots of great information, motivation, and even worksheets to help you with things like talking to your care team and tracking your progress.