Posted 3/4/2019 6:07 PM (GMT -6)
You sound very discouraged. I'm sure it is difficult to see the changes in your husband. I don't know where you live, but I would recommend researching to see whether there is a Rock Steady Boxing (RSB) in your area. RSB is a non-contact, boxing-based exercise program for people with Parkinson's. I have been participating in the program for over 12 years. I feel it has slowed my progression and kept me more flexible and agile. It also has made me stronger. The camaraderie is priceless.
As far as the Michael J. Fox (MJFF) folks are concerned, I have to disagree.I am an MJFF advocate and have gone to Washington, DC several times with this group to fight for legislation and funding for PD-specific issues.Aside from that, MJFF has done things no one else has done. They require their researchers to collaborate on their research - no more working in a silo and not sharing.They look at research differently as well. Rather than throwing study results out because a study didn't match the expected results, they pick it apart and determine what worked and what didn't. Obviously they explore the parts that worked. They particularly look for drugs that can be re-purposed. These would be drugs currently used for other purposes, but are found to benefit people with Parkinson's. This cuts years off the life cycle, bringing the drugs to us/market much quicker. Another of MJFF's accomplishments is in getting a program together whereby researchers funded by the National Institute Health (NIH - the federal government who is the largest source of funds for Parkinson's research) as well as MJFF (the second largest funder of Parkinson's research) to work together. This has not been done before in the Parkinson's arena. The MJFF folks have done some incredible things