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Last winter (perhaps.... not sure.... I lost the date) I had a delightful phone conversation with the UK PDS people. (We had to pause now and again when they asked me to aim the phone towards the mockingbird outside my window in balmy/bonkers Los Angeles.) I posted it to this list, probably during a time when Barbara Yacos was taking a time out. Below is the text, repeated at Barbara's suggestion. David Langridge's brilliant bit of whimsy is more interesting than repeating this nuts and bolts piece. But perhaps it will at least save Derek and Simon some digging, or we could compare notes on what they discover themselves. First, my two cents: The PD Village discussion was prompted by some of us who are solo, often because spouses understandably jumped ship after PD was diagnosed. There are enough of us that maybe we could become caregivers for each other. Every person has a dread -- PD or no PD -- of winding up in a nursing home, or worse, becoming a "burden" to our kids. Maybe that would be a solvable problem if we pooled our ideas. Until David Langridge's on&off pub materializes, this list is the best place we've got for such a forum. (And we'll always sup on our fava bean soup *outside*.) Naysayers in my support group have already raised some solid objections: "It's not healthy for disabled people to cluster into 'ghettos'. PD is depressing enough without being constantly surrounded by it. Remember the horrors of the '60's communes when people had huge fights over where to keep the can opener. When times are truly tough, blood is thicker than water, and only family will come through for you." Any thoughts, anyone? ************************************************************ 1995/96 This morning I talked about " PD Villages" with Rosie Haywood in the London office of the Parkinson's Disease Society of the UK. She said they've taken a different direction from the one Barbara Yacos read about a few year ago. They must follow the plan of the 1991 National Community Care Act for Medical and Social Welfare. The emphasis now is to help people maintain their independence and stay in their own homes. The facility at Walsall, the original "village", has been made into a sheltered accommodation" with "wardened care" with "flatlets" -- 6 rooms per wing with a "warden" on call for each wing -- for people who can't live independently. Because of the way it is designed, she said it would be possible for Yuppers (young-onset) to have their own wing. At Inverness, they've converted a wing of a lovely hospital into 2 bedroom apartments. It sounds beautiful -- nestled in the foothills of the Highlands. Families stay there (they can even bring the dog!) for short-term visits. Sometime it is while the person with Parkinsons is going through physiotherapy. For other people, it's like what we in the U.S. call a "time-share condo". Families come for respite care and for vacations. The Inverness facility idea was sparked and pushed by the Parkinson's Society as a joint effort with the government's Health Trust. After three years, when it's on its feet, the Trust will take over managing it. But in general, government support is becoming less available. The Society's projects have to be able to survive in a competitive market. They're applying to become one of the groups to benefit from the national lottery, since that's where people's "charitable" giving now seems to be going. They also organize group vacations with the needs of PD people in mind. She's now putting together a "yoga holiday" for example. Talking about housing options, Rosie Haywood referred to the Leonard Cheshire houses in the U.K. Huge old homes are redesigned to house groups of people with "mixed" disabilities. There is a least one for young people. ************************************************************ Mary Yost, from "Westwood Village" in Smogland near UCLA, where I walk to work but don't inhale; 48, diagnosed 1990 [log in to unmask]