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John Q. said.... "The shock made him/her so numb that it was impossible to formulate any questions about how the future might be. Later, (s)he boots the trusty computer, gets onto the web and reads that life will be living hell in ten years." 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. IF I'd originally gone to the MD JUST because I had some strange symptoms that disturbed me, and/or IF family and/or friends comments to me had reinforced my own observations about me having some strange symptoms, then I'd want to know the cause, and the sooner the better. IF I'd waited to get a positive diagnosis for a coupla-three years (out of this 10 year period you've referred to), then that'd be 2 or 3 years LESS I'd have to 1. enjoy the times when I'm still feeling half-way decent, and 2. more importantly, I'd have those years to PLAN FOR THE FUTURE. While it's easier in the beginning stages of a chronic disease to to ignore the future, that future WILL eventually arrive. IF one hasn't a sound economic and medical base and/or team to work with them in the early stages, by the time we and/or our physician FINALLY concur that there IS a serious medical problem YEARS may have passed. Valuable years..... 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. That, coupled with testing several different drugs, alone and in combination, and also learning about PD and diet, and just "learning," to live with the disease itself lost me time. Time, that had my MD permitted me to KNOW I had a chronic, degenerative disease while in the earliest stages - which was when I initially saw my MD for the symptoms I was experiencing - would have given me additional years to plan for my future. Well, m'friend, the future is NOW and it's a LOT harder NOW to marshall the energy needed to plan and get thru each DAY, much less each month and year. I begrudge every year that I lost because my MD refused to tell ME when *HE* KNEW I had a serious medical condition. I regret the time wasted as I stumbled blindly and alone towards the point where I FINALLY was able to force my MD to come clean on what was going on with me. 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. So YES, I'd rather I'd known I had PD as early as possible, rather than live in ignorant bliss. Tho truthfully, there are times NOW that I'd like to hide from the disease for a day or two. Having Parkinson's gets old mighty fast, doesn't it.... ? Barb Mallut [log in to unmask] -----Original Message----- From: John I Quist <[log in to unmask]> To: Multiple recipients of list PARKINSN <[log in to unmask]> Date: Monday, November 30, 1998 4:05 AM Subject: Re: Getting REAL PD Facts to the Public! (long) >On Fri, 27 Nov 1998, Barb_MSN wrote: > >> And for goodness sake, STOP sugar-coating that information. Get REAL >> and get HONEST with the general public. They DESERVE TO KNOW THE >> TRUTH about Parkinson's Disease! > >I think (IMHO) it is important not to print the worst-case scenario all over >the media. The picture we paint must be nuanced. Imagine the guy or gal >who just came home - alone - from the neuro who said "You might have >Parkinson's Disease". >The shock made him/her so numb that it was impossible to formulate any >questions about how the future might be. Later, (s)he boots the trusty >computer, gets onto the web and reads that life will be living hell in >ten years. > > > Then what? > > > >/John. (29 years/ diag 1?/ onset 18) >