Quote:

Originally Posted by Jaye Here's why I'm posting in this thread: It's up to us, folks. We have very few in the medical community who understand in the way that a speaker at this program understands (Paul Short, PhD, neuropsychologist). We have to take the message to other patients, no matter what else we do, and teach them what we have learned from the sharing on this board all these years. Paula and all, where do you think we should go with this? Should we be making speaking engagements if we're able? Writing a book? I was in the GDNF advocates group you mentioned, and I know it wasn't enough. Jaye

Jaye - I think you are right on! The patient voice needs to be heard. I know that it is beginning to happen, and I encourage all pwp to think about how they can let their voice be heard. For instance, I know that Leonore in NY has spoken to doctors about living with PD - and she has gotten rave reviews.

I think one of the reasons pdplan4life gets such good responses from attendees (after our pdplan4life talks at conferences), is because Sheryl & I are at the podium as People living with Parkinson's disease. I think as pwp we are so used to seeing other people talk about living with Parkinson's - it's strange and unusual to actually hear from people who are living with the disease.

And pwp CAN do it on their own - Sheryl & I do. It isn't easy, but pdplan4life is not on the payroll of pharma or any of the orgs. We do what we do on a shoe-string -- from our personal budgets. And when we speak at conferences, we neither ask for nor accept honoraria, and we ask only that our travel & lodging expenses be covered. I'm proud to say that we have gotten speaking invitations from PD orgs affiliated with both NPF & APDA, as well as from independent regional PD orgs.

We as pwp have many voices - and I encourage others to let their voices be heard in any way they can - speaking, or writing, or whatever other means works for you.

Jean