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Dear list members, I was very glad to see Mary Thompson's announcement of "My Spirit Still Sings," a video by Young Parkinson's Housing of Victoria, Australia. I first learned about this project about a year ago, while doing research on young Parkinson's support groups for "When Parkinson's Strikes Early." One of the Australian PD organizations referred me to Chris Robie, a member of this group and one of the creators of the video. After learning of their unique housing project, Barb and I asked Chris to write about it for the book. We discovered that both of our projects were trying to raise awareness about similar quality of life and housing and care problems that are faced by many young PWP throughout the world. Those of us on the parkinsn list know about Ivan Suzman's long struggle to receive assistance at home and remain in his community, and there are many other stories like his. Every few months there would be an update from Chris -- as the group's plans evolved, requiring also changes to his selections -- literally up to the last possible minute. Their video was recently completed (although we've been informed that our book is still at the printer's!), and was presented last week at the National Parkinson's Conference in Melbourne, Australia. I had the honor of being one of the first Americans to view it, and I'd like to share more of my review. Congratulations to Mary, Chris and Young Parkinson's Housing! Linda -------------------------------- Review of My Spirit Still Sings A Video produced by Young Parkinson's Housing Inc., Victoria, Australia Mary has lived with Parkinson's Disease for 11 years, ever since her diagnosis at the age 39. "Our bodies are going backwards" she says, "But our minds must go forward." My Spirit Still Sings, an important and compelling new video about the care and housing problems faced by Young Onset Parkies, is indeed about moving forward, despite the ever-increasing challenges of PD. The four young Parkies we meet in this video - Mary, Chris, Alan and Arthur, all members of the Young Parkinson's Housing project, have experienced devastating losses. Spouses have deserted, some have lost their jobs, homes, friends and as Chris remarks his "easy-going outlook on life." Each has reached the stage where the progressing disease makes it impossible to remain employed or to manage daily living tasks without assistance. Alan, Chris, Mary and Arthur live in Victoria, Australia, but their stories are echoed by young Parkies throughout the world. Few countries provide appropriate long-term care options for disabled younger people with PD. Those without spouses or other care-givers are especially vulnerable. Many like 46-year-old Arthur, are forced into nursing homes for the aged, because there is nowhere else for them to go. Most of these institutions do not take into account the special physical hardships and care needs that many young Parkies face. We experience a small bit of Arthur's life during the ending moments of the video, which are among the most poignant, as the viewer joins Chris and Mary during a visit with Arthur. Plagued by their own advancing symptoms, together they push Arthur's wheel chair through the nursing home hallways to his small room. While both are experiencing dyskinesias, Mary tries to assist him in composing a letter on his computer about his children, but Arthur is overcome by emotion and breaks down into tears. But as the closing of the video indicates this is "Not the end!" Rather than remaining overcome by their situation, the members of Young Parkinson's Housing are moving forward. They have joined with others in Victoria to develop new models of care for young Parkies in their communities. As a first step, they have identified multi-level care and housing needs, such as in-home support services, respite care, short-term crisis care, long term supported care such as home-sharing, and different levels of residential care. They hope this video will help raise awareness of the problem and raise funds to help make their ideas into a reality. Their project could very well serve as a model for similar ones throughout the world. I highly recommend "My Spirit Still Sings." Parkinson's organizations and support groups should see this video, and use it as a springboard to begin talking about care problems facing the Young People With Parkinson's in their own communities, and brainstorming for new and creative solutions to these problems. The video is accompanied by a beautifully written and informative booklet by Celia Jones, with background information about Parkinson's Disease and profiles of the four young Parkies featured in the video. Reviewed by Linda Herman For ordering information contact Young Parkinson's Housing Inc. P.O. Box 134, DARLING VICTORIA 3145 AUSTRALIA. ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn