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.