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On Mon, 30 Nov 1998, Barb_MSN wrote: > Speaking only for myself, John... Using your figure of 10 years, I'd > much prefer to know I had PD as soon as my MD knew, rather than try > to continue on with maintaining a pre-PD life/work-style, while the > disease made it's inroads upon my body and mind. Of course! This is not the point I'm trying to make. I too want quick and accurate information, but I am trying to say that this info MUST be balanced enough not to take away the hope of a good/slow progression of the disease. As I said in my last letter to the list; only when I have all the information, good and bad possibilities, I can decide how to live my life. The information I have recieved from you, my dear list-family, has helped me realize that I must live NOW if I want to minimize the risk of becoming a bitter man in a nursing-home. The support we give each other can help us to live a better, fuller life in spite of a frightening disease that takes away our body-control. > In my case, it took 7 years to GET a diagnosis 'cause I was 32 when > the first PD symptoms made themselves known. - "You're too young to > have PD, said my MD," and I bought that for a while 'cause in THOSE > days, like everyone else, i believed the MD was next to God. I've filed a formal complaint against my old MD because she gave the wrong diagnosis of MS two years ago. I was probably too young for PD... I know exactly what you are talking about. I wouldn't have known about the error if I hadn't gone to the university hospital and volunteered for a MS study. The scientist/doctor I met said that he had never seen an MS patient with my symptoms... > I also feel a sense of loss because I was so utterly alone over the > years while I was losing the "me" I'd always been and began my > evolution to a full-fledged Parkie. For years I was SO alone with > the disease as it progressed when I COULD have been NOT so very alone > had I known about the List and local support groups years earlier. Exactly. I addressed this in my previous post. It is important to inform newly diagnosed people about support groups, something that some MD:s won't do. /John. (29/ diag28(?)/ onset 18)