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Mike, thanks for sharing this. Larry ----- Original Message ----- From: "Mike T" <[log in to unmask]> To: <[log in to unmask]> Sent: Tuesday, September 10, 2002 2:19 PM Subject: introduction > 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 > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn