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Amen to this! We just had a seminar on Friday on progressive supranuclear palsy, which we presented in conjunction with the PSP Society. while PSP was the main topic at the patient seminar, we had one of the presenters here at the Institute in the afternoon for a scientific seminar with our research staff. He covered a lot of the more rare forms of parkinsonism and really brought home (at least to this nonscientist) how many ugly varieties of disease we are actually facing. Carole -----Original Message----- From: Barbara Smith [mailto:[log in to unmask]] Sent: Saturday, November 07, 1998 9:03 AM To: Multiple recipients of list PARKINSN Subject: Re: Hi, again / susan's mom's four-week [!] slide Susan, I've been reading your notes about your mother, and now I think I have to add my two cents worth. All Janet says is true. Your mother may have a Parkinson's Plus condition such as Shy-Drager syndrome or MSA. Very few Neurologists are able to figure this out and certainly even fewer GP's. Several years ago, when Ken had had PD for 10 years, he began to fall and pass out and to be incontinent and all the rest. His then Neurologist said it was balance problems. He questioned the diagnosis of PD and took him off meds for a while. When Ken got awful, he admitted that he had PD and put him back on sinemet and said there was nothing else to do; it was just PD progression. Then Ken fell and hit his head and was hospitalized in another town with another Neurologist who was better informed and we got the diagnosis of Shy- Drager Syndrome along with the PD. That was 7 years ago, and with the help of a Neurologist who is more knowledgeable and willing to listen and learn, Ken is still with us. He takes many meds, both for SDS and for PD and he takes Aricept for the dementia associated with all this. I have full-time help for him, but he goes to the gym with his helper 3X per week, and we go to support groups together as well as on trips in our trailer. We even go out to dinner with friends occasionally. And the Neurologist we had seven years ago said there was nothing we could do except leave him in the nursing home! I am certainly not saying that you will have the same results for your mother, but you need to get another medical opinion before you give up on her. The nursing home Ken was in for a while had a van that could take the patients to their doctors. I suspect that your mother's nursing home has the same. If it were my mother, and there was no other way, I think I would explore the possibility of an ambulance or some other means of medical transport to the movement disorder specialist. I hope I haven't come on too strong in this, but our success through persistence has made me a believer in the right doctor. You're love for your mother comes through in all your notes and your frustration is very clear. I hope you find what you need. Barbara Smith,cg/Ken/70/17