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Hello, I've been lurking on this list for about 6 weeks now and I thought I'd introduce myself. Please forgive the length of this e-mail, but I thought I'd share my father's story. My name is Michael, I'm 30 years old and live in the NYC area. My father is 69 and was diagnosed with Parkinson's about 8 years ago. I suppose the best thing about this list is hearing the stories, and seeing that my father's situation is not unique. For a long time I was worried that he'd "slipped through the cracks" of the system, or that my family had simply not done enough to find him the best care. Now I can see that the bottom line is simply that the medical community doesn't really have all the answers, or, in some cases, any of them. My father has been to five different neuros in the past eight years. Some of them have been highly regarded in the field of Parkinson's. For the first few years, his condition was kept stable by the usual meds (Sinemet, Mirapex, Comtan, etc..) In retrospect, he was probably terribly over-medicated. About 3 years ago the medications started to lose their efficacy (or his disease progressed beyond the point where meds could do any good, or he really doesn't have Parkinson's, or, or, or...your guess is as good as anyone's). He began to deteriorate. In April, 2000, he had his first bout of pneumonia. He was in the hospital for three weeks. He never really rebounded from that. That episode really marked the turning point in the quality of his life. He eventually returned to work, but really wasn't strong enough anymore, and retired shortly thereafter. By the end of 2000, it was clear that the disease was progressing more rapidly than ever. My mother tried to take care of him, but it eventually proved too much for her. By November, 2001, we moved him into an assisted living facility. From the beginning we realized this would only be temporary, and 6 weeks ago we had to move him into a nursing home. It was one of the hardest things I've ever had to do, but it seems the only safe environment for him. He just had another spell of pneumonia. This time it appeared to be aspiration pneumonia. While he was in the hospital, they gave him a full swallowing evaluation. Thankfully he did not have to go on a feeding tube, but he is now on pureed foods only. He is now out of the hospital and back at the nursing home. A little about his condition: my father has never had any tremor. His symptoms have always presented symmetrically. The first few years, his symptoms were largely physical and of the "postural instability/gait disturbance" variety. Over the past few years, his energy level has markedly decreased, while muscle rigidity has increased. The biggest problem has been falls. He can walk with a walker, but the nursing home mostly keeps him in a wheelchair. Actually, I lied. The biggest problem is his dementia. He is only partially "with it", depending on his energy level, med level in his bloodstream, phase of the moon, who knows. These days he is usually responsive, but can not hold a conversation, or follow a train of thought for more than a few minutes. This is largely why he is in a nursing home, and why he is confined to a wheelchair, even though he can walk (with assistance). His judgement is just too impaired to navigate through the world safely. He's been working with physical therapists for over a year now. He does fine while they're working with him, but can't seem to retain the information, or can't focus enough for it to "stick". His diagnosis has always been the disconcertingly vague "atypical Parkinson's". One of his neuros once mentioned MSA, but I don't think that was their final diagnosis. They had done an MRI to "confirm" their diagnosis. At they time, when I asked about a more precise diagnosis, they mentioned a PET scan, but basically said it wasn't worth it because it wouldn't effect his treatment options one bit. Now I'm wondering if it was a mistake not to insist on the PET scan. No tremor, no dyskinesia, more dementia than usual, lots of balance problems, meds don't help anymore. It's really a very disheartening situation. I'm not sure what's worse -- that modern medicine doesn't really have any effective treatment, or that no one can even tell us what he has with any certainty. I want to thank everyone for sharing their stories and information. Thanks to this list, I feel a little more informed as to what's going on in the PD community, both in the "mainstream", and on the more "experimental" side. Right now I'm in the process of reviewing the recent posts re: PET scans, supplements, etc.. The neurologist at the nursing home seems fairly knowledgeable about Parkinson's and I'd like to bring some of this to him, and see what he'd be willing to try. Thanks again, and I wish you all the best health possible. -Mike Taubman ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn