[no subject]

[Arthur Hirsch <epr@xxxxxxxxxxx>]

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 <PARKINSN@xxxxxxxxxxxxxxxxxxxx>
From: Arthur Hirsch <epr@xxxxxxxxxxx>
Subject: Re: SUPORT GROUPS
In-Reply-To: <17.109cbef2.279f4953@xxxxxxx>
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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



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.