"Personally, educating the public, and I include the PWPs and caregivers out there too, is paramount. We can't sit back and believe that ll PWPs and caregivers don't also have a misconception of what is going on around them. Every time I speak to a support group about PAN I marvel at the fact that 90% or more, 1) misunderstood, or 2) had no idea there was a PAN."

This is my experience, too, Carolyn, although support group talks = 1 and JHU talks/being interviewed by doctors number 2 or 3, and I really did make a complete idiot of myself the summer of the GDNF action. (It was mostly due to a slam-dunk drug change that i should have refused.)

As I said in post #26, above, we can do a lot, perhaps enough, by ourselves, and we can teach other PWP with solid information from the best websites and the most factual information here.

We need to become comfortable with talking about nonmotor symptoms and about depressed people getting proper medical attention.

And I believe that we must advocate for ourselves in the examining room and the surgical suite and equip others to gracefully do the same. The voice of the patient must be heard everywhere patients are found, so there is a powerful groundswell.

Jaye