In reading the many comments, ideas, poetry etc on this site, so many questions are being asked, but answers are few.
- How do we let our family and friends know what PD is really like?
- How do we tell our doctor that life for us is more than pills?
-- How many medical professionals and groups seek input from PWP?
- Do PD researchers look beyond the "test tube" in determining what PWP need?
- What does the face of PWP really look like? and feel?
There are so many associations, foundations and some celebrities that speak for PWP. , But where are these PWP able to speak for ourselves and know that we are being heard? I don't see a lot of cooperation between PD entities. It seemsThe PD RESEARCH PIE is being cut in too many pieces leaving us nothing but an empty pie plate.