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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. X-Sender: [log in to unmask] X-Mailer: QUALCOMM Windows Eudora Pro Version 4.1 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 In-Reply-To: <[log in to unmask]> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii" 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.