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Dear Listfriends-and especially, Rita, George, Abi, Darwin, Hilary, Brig and Gerrie, JRBruman, and Bill Turenne..... Here are a few thoughts from coastal Maine about my post on 10,000,000 people in the American PD community of PWP's and caregivers. I hope I can cover the issues and ideas raised,,,,,,, It's also one of those bad nights again, so I said my prayers and have gone to the List for a little humor-to uplift me-and enjoyed Gerrie and Brig's post, "Thought for the Day"!!!!!! George, thanks for your ideas about our image-I think they are, like Hilary just posted, extremely important.! I don't know how we will project our public image--it definitely needs shaping. I AM a member of the AIDS community of Cg's and PWA's.... I am a caring brother for three close gay "brothers." One is hospitalized right now, and is proabably not going to last very long. My first partner died from AIDS-related deterioration. I have been miraculously spared of HIV, at least, so far......and let me add, I am not in any way gay by choice-rather, God made me the way I am. Most of the list knows I have identified myself as a "gay" man- even though I was married to a wonderful woman from Minnesota for several years. And despite the tragic impact of HIV/AIDS on my "gay" brothers, I choose to devote most of my energy to the PD community, as long as I can help out. PD is tragically lacking in paid, effective activists. Our advocacy arm is improving rapidly, but we are still only a whisper by contrast to the HIV/AIDS community. The bottom line for me is to try to be a catalyst to get us ALL into the PD activist mode. Like the AIDS activists -we have NO time to lose- we MUST learn how to be heard by the budget-makers in Congress. So I really hope you understand that God made me an activist and I will continue in that mode. Our PD community suffers way TOO MUCH. Obviously, none of us know how big our PD and CG community is. I think it was Murray Charters who suggested 6-7 caregivers per person with Parkinson's. This week, adding in morning, evening, night and overnight caregivers, 12 people have been paid caregivers for me. I am probably much sicker physically than many on this list, so my personal caregiver numbers are perhaps greater than most PWP's on the list. I called my support group President, Patti B., yesterday, to ask her what she thought of 6 CG's per PWP. Her husband has PD, and even though he has her as a marriage partner-and a wonderful partner she is indeed-she said to me that 6 CG's per PWP's, "at least" , was, yes, a good guess--based on her knowledge of all of us in the local support group. Rita of Nebraska posted the List about the importance of a count of PWP's- and George's post focussed more about our image than our numbers-anyway-they triggered off my numbers post. Abi and Darwin talk about the potential overcount in my numbers. While fully aware of their concerns, which I share, I feel, after my talk with Patti, and other Maine caregivers, that my numbers are probably good ones, if an accurate count could somehow be done. JR BRuman talked about a global count. A whole new field of anthropological research opens.......... Brig and Gerrie. I think, posted on the problems of getting a full count of our community-including those in denial, in nursing homes, etc. I think they mentioned the 4 people right in their neighborhood that are among the "uncounted." I know they are right! I am having an awful time with medicines cutting out so quickly and I feel ANOTHER off-period coming right now, so I must stop. Wicked bad tremors and muscle pain--I wish this disease would vanish but I have no magic wand. Thank you everyone for responding. Hopefullly my numbers are really not so bad, and i'm not at all in the deep end of the pool. Bless you all..... still wading in the waters-with George-imagine that! 9,999,998 more of us are out there-somewhere- Ivan :-) :-) ^^^^^^WARM GREETINGS FROM^^^^^^^^^^ Ivan Suzman 48/11 [log in to unmask] Portland, Maine land of lighthouses 59 deg. F *********************************************************** On Thu, 30 Jul 1998 23:22:24 -0400 Jed Blue <[log in to unmask]> writes: >George, >I think you have hit the nail on the head. Part of the problem is >that >the public identifies PD with old age. Sure, lots of PWPs are older, >but lots are younger too. There is a sizeable segment of PWPs of >childbearing, childrearing age. > When we first heard about AIDS the popular misconception was that >everybody who had it was gay and strung out on drugs. Now we identify >it >with "the strongest, brightest of our future" Somehow we need to do >the >same sort of public relations job for PD. >Maybe we can call ourselves "the caretakers of the next generation"? >Any more ideas? >If I exist, there must be others out there like me. >Hilary Blue > >George J. Lussier wrote: >> >> Dear Colleagues, >> In addition to having some reliable data on the numbers of PWP it >would be useful to look at another level of the "big picture" on PD. >It would be best if you would be willing to play a little mind >game.Picture in your mind's eye a person with AIDS....