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Paul, Brilliant ! I agree totally. Finally, a breath of fresh air. Greg ************************************************************************** Support Parkinson's Disease Research www.homestead.com/mercercountyyoungonsetpd/yoppers.html -----Original Message----- From: Paul Lauer <[log in to unmask]> To: [log in to unmask] <[log in to unmask]> Date: Monday, November 15, 1999 6:44 PM Subject: Sort of PD - My opinion only >I was diagnosed in February 1999 and joined this list some months later >having learned practically nothing viable about the disease up to that point. >I knew diet mattered because I was on Sinemet but didn't really know how much >protein was too much protein or the myriad other questions surrounding long >term outlook, meds, diet, exercise, studies, all the kenesias, dysfunction, >psychological effects, et al. I hungered for information and read everything >on the list avidly, in a hurry to learn. I bridled at the non-PD messages >considering them to be not just a waste of my time but also a waste of my >opportunity to learn more about something which had me so scared and was >threatening to ruin the rest of my life. I considered complaining to the >list, asking for the non-Pd stuff to either stop or go off-list, but decided >that I was too new; that it would be too presumptuous; and that it was up to >the list sponsors to take action if they wanted to do so. > >Well, time has gone by. Approximately 6 months or so since I joined the list. >I have had an appointment for a complete evaluation by Dr. Stanley Fahn, a >big name in the PD business. I brought along a long list of questions for him >to help me with and his conclusion regarding my knowledge of the disease was >that I probably knew more than most Neuros who didn't specialize in PD. Be >that as it may, I am far more comfortable with what is happening to me and >what I'm doing about it and will do about it in the future than I was when I >was first diagnosed and didn't even know the list existed. > >I am lucky. My disease is still stage 1 and I am fully functional on a day to >day basis. I go to work, I go to play, and except that my neck bothers me a >lot and I have some tremor from time to time, you would not know I have the >disease if you didn't know what to look for. BUT EVERYONE ELSE ON THIS LIST >IS NOT NECESSARILY THAT LUCKY. Which brings me to my point if you haven't >deleted me by now. The list appears to serve a function aside and apart from >its informational purpose. For some, it appears to be an outlet to vent >frustration. For others, it appears to be a form of social outlet. For some, >for all I know, it may be their only opportunity to converse with people who >share their concerns or their only opportunity to converse period. Whichever >function it serves, it would be and is selfish to not allow everyone to give >to and receive from the list whatever they need. At the moment, I need only >info. Maybe at some point in the future when the disease is more >debilitating, I'll need more. So now, generally speaking, I take the info and >except sometimes as a matter of curiosity or because someone doesn't state >their subject correctly and I start to read, I use the delete key. I am >significantly more tolerant of non-PD now and if I have stated my case >cogently, so should you be. > >Regards to all > >Paul H. Lauer >