Paul,
Brilliant !   I agree totally.
Finally, a breath of fresh air.

Greg
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-----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
>