PARKINSON'S has MANY FACES, BUT KNOWS NO BOUNDARIES!!

[par004]

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.

[drew410]

I will get back to you on that one. Requires a lot of thought and me to calm down. I'vee met some Parkinson's UK people. Not impessed. More to follow

[mazpar]

hi hun well for me its when i want to talk i can do i dont like feeling pressure of it all , plus dont like seeing older people with the bad side effects , and want my life to be as normal as possible as i was diagnosed at 40 and then my family was still young,but go to the yappers or whatever its called now once a month. i am 54 now and would rather spend the time with my grandkiids and at the radio station doing me northern soul voluntary.

mazpar [maria elliott]