Thank you, Nan and Laura, for pointing out the truth. And I do believe if the truth were to be picked up by enough people, we would have already found a cure for Parkinson's. The truth is this:
PD DOES NOT HAVE A UNIFIED VOICE!
There is a lot of talk about patient empowerment, but I haven't really seen true patient empowerment. Truly empowered patients (in this case people with PD, which includes caregivers) are given enough power by those holding the purse-stings to take risks. And taking risks is what it takes to make things happen.
This is what occurs in research - someone has a sponsor (it takes money to take risks), then they apply that money to an idea (in research, we call this the hypothesis). When you have a solid hypothesis, then you turn that over to the experts - which would be the medical technologists, the clinicians, the research nurses, the statisticians, the investigating physicians, and last but not least - the patient.
Who knows more about living with PD than the patient and the one who cares for the patient? No one! The PWP is te real expert. I can think of hundreds of trials which would not have gone sour if those reporting the stats would have listened, truly listened to what the patient was saying. Who wants a cure more than the patient? No one!
What can we do about the fragmented organizations that are representing the unified voice of the PWP? Let's start using these forums to brainstorm ideas, point out where we fall short in listening to those who live with the disease, and DEMAND PATIENT EMPOWERMENT!
OK. The ball is in your court. Take the serve and start playing like it's for real or we lose. And after 20 years with this disease and playing advocate the best way I know how, I am ready to try another way of playing this game.
Any suggestions?? Remember, the players are the same. It's just the rules that must change.
Peggy