^^^^^^WARM GREETINGS FROM^^^^^^^^^^ Ivan Suzman 48/10 [log in to unmask] Portland, Maine land of lighthouses 35 deg. F sunny-for a change *********************************************************** Dear Listmembers, Due to a long winter's night by the woodstove, I've had the opportunity to think about some of the threads and currents of thought and feeling going on here on our World List. Frustration that we PWP's and "GAP's" (are we "GAP's" on the French-speakers "Parkelist" - Gens Avec Pd?) are NOT SEEN by the people with political money, nor by the general public, is an underlying current. So is the feeling that Parkinson's has been projected as an old-person's terminal disease, creating a stereotype that is completely inappropriate. There is an underlying nervous coexistence with our PD drugs, and surgeries. Age-ism, despite the Grey Panthers, is rampant in America's youth-oriented society. This attitude makes it hard for us PWP's to break the stereotype. The situation reminds me hauntingly of the md-1980's, when anti-homosexual attitudes stereotyped AIDS as not affecting women and children. I know how agonizing Parkinson's is, believe me. With AIds, it was the recognition in about 1985 that the HIV virus was fatal virtually 100% of the time that shocked the Cure AIDS movement into action. And it was the willingness of PWA's afflicted by Karposi's sarcoma--the horrible purple skin cancer-to be SEEN publicly, that woke up the Center for Disease Control in Atlanta. Anyone seen the movie "And the Band Played On?" We need to show the SHOCKING truth about parkinson's. The more that we are seen at our WORST, the grater the outcry for money, research, and education, and aid to families. About March or so, we were talking about going on the Oprah show, on 20/20 with Barbara Walters, or wherever we could get media exposure. Stan had tried to get us on the Oprah show--and now that he is a Hole-In-The-Head Gang member, maybe he can, along with others PUSH to get us on Oprah. When I posted the "Pictures,Pictures,Pictures" message in October, the subject was HOT on our LIst. Everybody had something to contribute about seeing our faces. Our faces. Our faces. That is what is NOT being seen by the public. Morris Udall's face, lying in a hospital bed, extremely ill. My face-pierced ear, blond hair shoulder length, short dark beard. The faces of all of you. Has anyone besides me ever seen PICTURES sewn into panels of the AIDS quilt? The human face is so powerful, even after the soul that moved it has passed from this Earth. So my message to ALL of you is to PLEASE work to get our faces on the media. PLEASE, caregivers, don't hide the faces of your loved ones. Rather a disfigured, or pained, or sniffly or drooling face, or a masked face, than none at all. The Parkinson's Action Network's newsletter has now brought me my first pictures of Dale Severance, Jim Cordy, Margaret Tuchman, Barbara Schirloff and Joan Samuelson. I finally have images of human faces to go along with e-mail and surface-mail messages. If I were convening the Congress of the PWP's/GAP's and their CG's, my highest priority would be media exposure. Let's see our heroes and she-roes (heroines) like Lonnie and Muhammad Ali, and, let's also see the faces of the rest of us. If I were in charge of a budget to create visibility, I would gather together a PWP and CG crew-and the FACE PROJECT would be launched. Well, gang, I truly hope that there is enough to chew on in this post that it may help us all to be "Invisible No More." I hope the Americans have a warm Thanksgiving, full of hope, and to the rest of the List, I equally wish you a season of hope. Looking forward to the discussion that I hope this message generates. ^^^^^^WARM GREETINGS FROM^^^^^^^^^^ Ivan Suzman 48/10 [log in to unmask] Portland, Maine land of lighthouses 48 deg. F clouding over for more snow... ***********************************************************