To all:
*Since this is PD Awareness Month

*and Murray and various others have been providing us with easy access
information &/or sites related to PD

*I have taken the liberty of putting together the following ORIGINAL REQUEST
/ RESPONSES made in December and asking that this be addressed now by any who
might be able to assist in the effort. . .

Everything Paul stated in December holds true for so many people without the
means or ability (for whatever reason) to educate themselves about
Parkinson's Disease -

This is a project that I had already started working on over the past couple
of weeks when I ran across the following messages that I had filed under
Advocacy / Ideas -  It's something I'm doing anyway - so the more the
merrier. . . !

Anyone interested - please let me know OFFLINE and I'll update the list this
week -

. . . and in the beginning there was . . .

Subj:         Re: Just an idea
Date:   12/16/99 3:47:48 AM Pacific Standard Time

Dear list: Over the weekend, I bumped into an acquaintance who I hadn't
seen in 3 or 4 years who had developed PD, as I had, in the intervening
period.  After a short while, it was painfully obvious how little he knew
about the disease even though he was in his third year with it. As it
happens, he and is wife are not computerized, so my intended suggestion to
get on the list would have gone nowhere. But I began to think about all the
other pwp who are not on the list and wonder what their extent of knowledge
was. Aside from what I learn on the list directly, the references which pop
up from time to time about other sources of info are invaluable and leads one
to the sites fro information gathering. For example, I recently added 'Ask
Dr. Lieberman' to my list membership and receive as much mail from that
source as from the pienet. Anyway, I digress. I was wondering if there would
be any sense in trying to mount an informational campaign, centered say on
Neuro's offices, in an attempt to make more pwp aware of the list. Perhaps
someone with PR skills could compose a flyer which we could download (for
uniformity) and then with Neuro permission, leave a batch of them in waiting
rooms or on bulletin boards for patients to pick up.
Any merit? Any other ideas? Or should I shut up.        Paul H. Lauer


From:   [log in to unmask] (Joan Hartman)
Paul.....great idea......go for it......originally when diagnosed I called
three hospitals in my area (at my neuro's suggestion)  looking for support
groups and all they could give me was their once a month mtg which didn't
have too much to offer.....people just weren't friendly, just speakers and no
group interaction..I felt so alone with this....and I seemed to need the
support in the middle of the night when I couldn't sleep....and I was
getting really scared .by all I was reading that could/would happen to
me........I was still in the "who me?" "why me" denial stages and feeling so
alone...then one sleepless  night I stumbled on the dumpster gang site and
somehow found out about this LIST.......and all of a sudden there were 1,800+
 people out there just like me  with PD ....it helped me overcome that
feeling of being all alone with PD.....it got me to the point where I could
actually say the words "I have PD" outloud where I couldn't before.....I told
my neuro about the list and  said had heard about this List but never told me
about it........and yet it helped me so much......pls do what you
can........if we come up with a flyer, I'll be sure to give it to my neuro
and the 3 hospitals......   Joan Hartman


From:   [log in to unmask] (Cathy Morse)
Paul, I like the idea. and I'm sure my neuro would be happy to have the
reference to
give to  his pateints. Let me know if I can do anything to help.  And please
keep
me informed on this project.        Thanks, Cathy


Michel Margosis <[log in to unmask]> wrote:
Support groups all over the country should be able to provide much info too.
Michel

Hilary Blue wrote: <[log in to unmask]>
Ah, but do they?    Perhaps they could use a little incentive!

Carole Hercun <[log in to unmask]> (Carole Hercun) wrote:
Hi Paul: I am amazed at the paucity of information available in the average
neuro's office, even in the medical centers like Johns Hopkins and
St.Elizabeth's.
The wonderful resource that is this List was only discovered by me (and I'm
sure by others)by accident. So please don't shut up. Suggestions, anyone?

Michel Margosis [log in to unmask]
The neuro's office is not a library, meaning that it's no place to get
information unless it comes directly from the neuro himself.  The neuro's
office is for treatment!  Public libraries, organizations like the NPF
(National Parkinson Foundation), APDA (American Parkinson Disease
Association), etc. can give you mounts of information about the disease and
various support groups.

This list is but a tiny fraction of the PWP population and it is fraught with
misinformation as well as correct information, and it is often difficult for
an untrained person to differentiate.

Thus, do not accept anything stated here unless properly verified or
corroborated because the wrong information may be hazardous to your health.
Michel Margosis     'Carpe Diem'


Carole <[log in to unmask]> (Carole Hercun) wrote:
Dear Michel: Perhaps the neuro's office SHOULD BE a library, or at least a
gateway that points you in the right direction towards accessing resources
like the national
Parkinson's organizations, and this List. When faced with the davastating
diagnosis of an incurable, chronic, degenerative neurological disease, it
would be helpful to learn about the wonderful available support and education
that many patients and caregivers don't know is out there.  This was
reinforced for me when I volunteered for the
N.Y.C. Parkinson's Walk and sat at an information booth on a N.Y.C.
streetcorner giving directions to the Walk. So many people asking for
brochures, etc. So many people
starved for information about this disease. I am a health-care professional,
so I know where to look. What about the others?                 Fondly, Carole


From: Paul Lauer <[log in to unmask]>
Sent: 17 December, 1999 9:18 PM
Subject: Just an idea - version 2

Dear list: After originally proposing the idea of using neuro's offices to
spread the gospel of the list and encountering a big yawn
from the list, I gave up on the thought.  .....together in a one-pager?
If someone has the writing capability but doesn't know all of what to
include, we can call for suggestions and (he) (she) (they) will get flooded.
For my part, I will work on an implementation theory with suggestions
and input from anyone who cares to chip in.
Happy Holidays      Paul H. Lauer


Joan Hartman wrote:  <[log in to unmask]> (Joan Hartman)
Paul..........I think people have not been reading the emails with Christmas
shopping and other busy stuff this time of year.........I think we OUGHT TO
DO IT.......I will help in whatever way I can......how about taking this on
after the 1st of the year.....when things slow down a bit......I bet other
members will agree to be in on it.........wha'cha' think?????  Joan

From:   [log in to unmask] (Cathy Morse)
Paul, I concur with Joan. first of the year would be a good time for a
project like
this.  I will help.     Cathy

From: Paul Lauer <[log in to unmask]>
Joan: As I assume you've been reading, the reaction to the idea has been
mixed and more importantly, not particularly overwhelming. Since it isn't
something I can do only by myself, it looks like the idea will pass away
quietly.        Paul

From:   [log in to unmask] (Joan Hartman)
As I posted earlier................I, too, stumbled on the List...........and
all of a sudden there were 1,800+  people out there just like me with PD
....it helped me overcome  that feeling of being all alone with PD...

We  need to spread the word that there is a viable SUPPORT GROUP out there
in cyberland and it's a 24 hour 7 days a week group that we have....we don't
have to leave home, we can be in our night clothes, etc....and when we feel
we need the support, we're only so many feet from our computer and the
LIST......also, when I was looking for info I bounced all around the place
looking...and, now, thanks to list member Phil Tompkin all that info has been
put together in his Index........we have people retired with various
backgrounds or currently working as doctors, pharmacist, nutrition expert,
psychologists, research chemist, etc.,     we've got alot going on here,
folks,  it's all here.......let's share with those in need who don't know
about us.......Joan Hartman

From:   [log in to unmask] (Cathy Morse)
I  have to agree with Carol, I found this LIST by accident also. Best
accident  I've had in a while.  These doctors  should have,  at the very
least,  a source  list of addresses (both snail and e-mail),  phone numbers,
etc. that he/she can give to newly diagnosed patients as a starting point for
information.  AND PIENET SHOULD have a prominent place  on that reference
list. maybe a general source list for pwp's is the approach to
take.  any thoughts?  Apart from hard core information, this list provides a
support that is invaluable from a whole person perspective  For people like
me whose mobility is limited, it is a god-send. (include SPARKLE in that
too!)  I don't know how many times in the last few months  when just reading
some of the postings has given me a smile or warmed my heart or made me think
beyond my little world to share in the world of others.  I want to share this
list with as many in need as  i can reach.  Even with
the petty bickering that goes on at times..

Let's face it, a fair number of us are diagnosed by a general neuro.
Parkinson's is  only one of many diseases they deal with.  Actually same can
be said of a movement disorder specialist. Personally, I don't take anything
I read from any source as written in stone. (I constantly engage my own
filters, for better or worse )And I would be a little suspicious of any
doctor who wasn't open to a source like this one. But as "they" say, "to each
his own.  It never hurts to ask.        Fondly, Cathy   (50, 48,,46)

From:   [log in to unmask] (Bill and Lenore Olson)
Hi  Paul:. . .  Did you take a look at our support group's web page. If you
have an interest, please take a look at the inspirational page.  These people
list anyone who reciprocates. (without endorsing them.) I  suspect there may
be lots of web sites out there who would be willing to list a non-profit
organization. I hope that I am not biting off more than I can chew, but would
like to assist your idea along.   Our web site has the following URL
<http://www.cjnetworks.com/~nekpa>



Cari
  daughter of Dempsey-PWP (71/16+)
  & Jo Ann-CGiver