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PARKINSN Archives
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PARKINSN@LISTSERV.UTORONTO.CA
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Katie:
Please contact NPF's Support Group Coordinator Claudia Espinoza,
[log in to unmask] or 1-800-327-4545 and she can help you locate or even
start a local support group.
Sincerely,
Bonnie Douglas, R.N.
Patient Services Director
NPF
>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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