I have been a member of this list for four of its five years of existence, it has grown considerably and has changed considerably since then, and it will continue to grow and change. Let's see if we can't guide it in the right direction.
I get the feeling that we are being pulled several ways at the same
time. We have some members who want to use the List to promote their religious
views ( The Far Right Wingers), some who want to use the List to further
their agenda of political activism, civil rights, welfare, etc. (the Extreme
Left Wingers). Then we have those who want a medical report and dictionary
and there are also those who want and need a support group. We can't
be "all things to all people" especially when we are at the same
time trying to reduce the volume of non-PD postings. I would like to reiterate
the suggestions made before, that we think before we post:
1. Is this post directly
related to PD and/or a significant number of people on this list?
2. Is this post, if not
PD related, suitable for a Parkinson's Information Exchange list? (Even
if
we stray from this a little, but not too far, it shouldn't hurt the quality
of the list) I'm
thinking a few humor or human interest stories.
3 Make sure the Subject
line reflects the info in the posting.
4. Remember, You get out
of the List, what you put into it! What goes, around
comes around, what shall ye sow, so also shall ye reap and other similar
words
of wisdom. :
5. And last but not least-
Use your DELETE key if you don't like what you see, don't "Go
Postal" (my apologies to any US Postal workers, but the Devil made me say
that)
I would like to re-post a message I have saved because it reminds me of ONE of the ways this List can be invaluable.
DEAR list folk,
I sit here at the computer at 4;30 am barely
able to type because of my left
side shaking so. It seems like my symptoms
have progressed in the last
month or two. It sucks, to watch
my physical condition worsen, I am 40
years old, I am in excellent physical condition
other wise, the shaking (in
the morning) doesn't stop for at
least 2-3 hours after I take my meds (1
sinemet 25/100cr & 2 permax .25 & eldepryl)
at awakening. then it seems like
it lasts for an hour (the on time) and
it's time to take more drugs ,
hopefully in time so they kick in before the
next bout with pd. it really
sucks sometime, I try to keep a positive
attitude, my friends are great. my
boyfriend is wonderful. but how do
we keep our shit together in times
like this, yesterday was rough, today so
far ( it's 5;15 am) is not good, I
sit here typing and cant control my body,
I cant be a rock all the time, I
cant let loose my emotions on to my friends cuz
they don't know how to
respond (how can they) and it is hard on them
cuz they feel helpless.
I hate this disease and what it does to
me! I WANT MY BODY BACK! I don't
have faith that any drugs are going to make it
better, cuz they dont, they
just offer a different set of side effects.
oh what fun trying to figure
out the exact chemical balance and timing that
will work (for an hour). I AM
FRUSTRATED! I AM DEPRESSED!
I AM SORRY to dump this on you guys,
but thank God your here
with love and appreciation for this list
Names and other info have been deleted.
For those of you who are looking far other or more listservs try:< http://www.liszt.com/ >
Viva La P.I.E, List
Bob Chapman 65/61/50
California Desert
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