Multiple System Atrophy Information:
Defeat MSA – supporting education, awareness, 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:
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.