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> Barbara Mallut wrote: > > I'd like to see all newly diagnosed PWPs be contacted by another > > Parkie who will act as a contact person ...a tactful one... with > > answers to the myriads of questions the newby Parkie may have, and > > suggestions and hints on how best to adapt to the disease and to ease > > newly diagnosed into a support group sooner, rather than later. I feel fortunate to have found a support group phone # for the Greater KC Pd support group in material from my neuro's packet his office mailed when I'd called for more info. I called the week of my pd diagnosis last Nov. 97. The phone was answered by a male volunteer pwp who was kind, considerate and offered to send me a packet of pd info and also gave his own personal referral to a movement disorder clinic that is now where I go for consulations. There was also a nurse on duty at that same # who called me back and was very positive and helpful, too. Thanks RN Deb and volunteer male pwp....I don't know your name. From the packet, I found BarbKKFI's article re:Wit and Wisdom on the Internet and when we got internet access in Jan. 98 I found YOU....my list family....the best support I could have when I was scared, panicked, ill and desparate. You helped me accept that I have pd, decide to learn all I can about pd treatment and become an advocate for federal spending for pd research. Judith Richards wrote: > When a newly diagnosed young onset contacts the Parkinson office here, > they are invited to join our support group. If they are interested, they > are told that they will be called by one of the leaders. Then, either > Joe (co-leader) or I (whichever) call the new person and invite them to > meet us at our home. > This past summer we had two new couples here with the four of us - Joe > and his wife, Donna, and Al and myself. We have found that small > meetings like this make new PWP more comfortable prior to meeting the > whole group. I finally met pwp at the St. Joe, Mo support group in June 1998 at a carryin lunch that had been moved indoors due to threating weather. I had talked w/Stephanie Mefford, support group coordinator on the phone, having gotten her # from Parkinson's Update newsletter of KC group of NPF. She gave my phone # to a member of the group who called me....or maybe I called her. She was related to a former employee of my husb and we had a nice chat on phone. At the meeting, there were pwp at diff. stages. None in wheelchairs but at least one older male pwp who was masked of face and had difficulty walking. The rest, alto older than me, were friendly, had brought good food to share, and made me feel welcome. I took petitions from Helen re:Udall bill funding to send to PAN. All present signed. I had done it.....met pwp, identified as a pwp, and found out that pwp are a great bunch!!! I've met people w/o parkinson's who certainly had health problems I didn't want. I just try to take one day at a time and remember that each pwp is diff. in progression/severity of disease. I've met pwp BarbKKFI of Kansas in person at her home and many pwp at Kathyrnne's nutrition speaking engagement in KC, KS. Not one of those pwp has ever made me wish I'd stayed home from the meeting. I like most pwp I've met and think the contact via the list, internet, group mtgs or personal chats on phone or in person are vital to our supporting each other. Without all you pwp and caregivers'/family members of pwp, I would certainly feel like I was on a desert island. My friends, family, church family are all great support......but you have empathy...have walked in the shoes...worn the t-shirt. Thanks for all your help!!!! Jeanette Fuhr 48/dx ll/97