At 03:53 PM 1/23/01 , you wrote:
>Hello Don,
>
>When I was first diagnosed, I read a book, and I don't remember either the
>title or author.  The author wrote that he/she thought that support groups
>were very beneficial but that in his/her experience, support groups for PWP
>did not work, did not last.  The explanation given was that for PWP,  who had
>been diagnosed for some time, were not able to, or had difficulty in getting
>to the meeting site, or did not want to go to the meetings.  And, that for
>the newly diagnosed, particularly for the people diagnosed with YOPD,  the
>issues and concerns were very different and that those persons did not want
>to be in the same group, did not work as well in the same group, as those PWP
>who had been diagnosed earlier.
>
>I tried to find a support group because I thought it would be beneficial for
>me.  I was working then, and our investigator had telephone books from every
>city, town, burg in Wisconsin, as well as from most major metropolitan areas
>in the United States.   I went through those phone books, and there were very
>few support groups for PD, and those few were in the major metropolitan
>areas.  There were none in Wisconsin, not even in Milwaukee.   I checked
>newspapers at the library on the possiblity that there might be information
>about meetings in the newspapers.  I had no better luck in finding a support
>group.  I know one or two people on this listing service who do go to support
>groups, but I think that is very rare.
>
>I wasn't aware that PWP were more prone to use the internet as a substitute
>for a support group; I did not get this computer and I did not even find this
>listing service until very recently.  I do know that, for whatever reason,
>there are very few support groups for PD out there.   And there are many PWP
>on this service.  And there are other services, chat rooms, research
>facilities, etc.  I don't think that the resources on the internet are
>necessarily used as a substitute for support groups by PWP.
>
>Katie, and still probably looking for a support group.
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Date: Tue, 23 Jan 2001 17:18:10 -0500
To: Parkinson's Information Exchange Network <[log in to unmask]>
From: Arthur Hirsch <[log in to unmask]>
Subject: Re: SUPORT GROUPS
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Katie, several years ago I compiled, to the best of my ability, a list of
support groups in the United States and parts of Canada and put it on the web
at

http://members.fortunecity.com/panforum/asupport.html

The response was underwhelming.

 From time to time, people write me with information to change the data on
their support group, but I'm sure that I don't get reported to me but a small
fraction of the changes.  So I suspect that the list is pretty badly out of
date.  And there's been no groundswell to update it.  However, as I visit
various communities, I still find it useful for locating support groups and
attending their meetings.

Dave Purdy recently checked out all of Ohio, and I tried to incorporate his
results in my web site, but very few others have been that helpful.

I believe in support groups also, Katie, and I would be happy to update my web
site if an interest were shown by more people.

Art


At 03:53 PM 1/23/01 , Katie Wolfe wrote:
>Hello Don,
>
>When I was first diagnosed, I read a book, and I don't remember either the
>title or author.  The author wrote that he/she thought that support groups
>were very beneficial but that in his/her experience, support groups for PWP
>did not work, did not last.  The explanation given was that for PWP,  who had
>been diagnosed for some time, were not able to, or had difficulty in getting
>to the meeting site, or did not want to go to the meetings.  And, that for
>the newly diagnosed, particularly for the people diagnosed with YOPD,  the
>issues and concerns were very different and that those persons did not want
>to be in the same group, did not work as well in the same group, as those PWP
>who had been diagnosed earlier.
>
>I tried to find a support group because I thought it would be beneficial for
>me.  I was working then, and our investigator had telephone books from every
>city, town, burg in Wisconsin, as well as from most major metropolitan areas
>in the United States.   I went through those phone books, and there were very
>few support groups for PD, and those few were in the major metropolitan
>areas.  There were none in Wisconsin, not even in Milwaukee.   I checked
>newspapers at the library on the possiblity that there might be information
>about meetings in the newspapers.  I had no better luck in finding a support
>group.  I know one or two people on this listing service who do go to support
>groups, but I think that is very rare.
>
>I wasn't aware that PWP were more prone to use the internet as a substitute
>for a support group; I did not get this computer and I did not even find this
>listing service until very recently.  I do know that, for whatever reason,
>there are very few support groups for PD out there.   And there are many PWP
>on this service.  And there are other services, chat rooms, research
>facilities, etc.  I don't think that the resources on the internet are
>necessarily used as a substitute for support groups by PWP.
>
>Katie, and still probably looking for a support group.