Well said Paul,
My disease has really gotten worse in the past month. I was looking for info
to on this and what other people are going through to make things a little more
comforting for myself. But lately I have done nothing but hit the delete key on
topics not even refering to pd. I do want to thank janet though for those pmd
e-mails. Those are really informative.
Thanks janet.
Tina - Fairfield Ohio
Paul Lauer wrote:
> 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
