From my perspective I'm constantly looking for a two pronged approach: now and then. "Now" refers to what can we PwPs do now to slow, halt or reverse the progression of our disease. Programs like Pedaling For Parkinson's, dance, big and loud, all help people in various stages. "Then" refers to the research arm as Debi articulates so well. How can we as PwPs support those efforts? As PPMI gets closer to identifying biomarkers, research labs are more interested in investing in therapies that can actually have measurable outcomes in the short term rather than waiting 20 years to see how patients respond. Hence we see increased interest from big pharm as they see measurable outcomes on the short term horizon.

Debi points to the greatest difficulty, or at least one huge hurdle: getting people in our community to participate. I'm in two long term studies and my husband is in PPMI. How hard can it be to find 600 people willing to be in PPMI? Harder than we expected.

Our biggest hurdle in Pedaling For Parkinson's is getting people out the door to YMCAs to get on the bikes or to get on the bikes at home. They just have to have a regular road bike on a trainer at home or hop on one at the Y, but getting people to do it is tough. I really don't know why. It's hard, but it must be harder to sit in one spot and watch life go by. There are lifelines. Why don't people grab them? What am I missing?