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Hi George; > Thank you Ron, Don, Kathy, Millie, Jeanette, Marling, Larry, Peter, > Janice, Delda, Sid, Charles, Debbie and Murray for sharing your > experiences > A few specific questions > My Plan > > In the last few months I've been giving talks on PD and my > experience with a staged bilateral Pallidotomy featuring my video. As a > part of the experience I've been giving each person attending a packet of > information which includes a few articles on PD, a few more on > Pallidotomies, a medication alert card, Tom Riess' article on parkinsonian > speech, some humor, a few still pictures of me during surgery , a few of my > short stories etc. Next week I'll be chatting with a group of elderly PWP, > in March I'll be sharing the speakers role with a well known PD-wise > neurologist at a presentation for the local hospital's nursing staff, and > in early April I'll be talking with a PD support group in Keene NH. > With each group I've changed the packet a bit. Currently I'm > developing the sections dealing with Social security/ Disability and > alternatives to traditional medicine. What I 'm expecting to develop is a > take-it-home packet that would be given to each PWP/caregiver at the time > of their initial diagnosis or at any other appropriate time. > I've compiled a list of nine key people who represent organizations > that are likely to have initial and /or ongoing contact with PWP. I've been > talking with these physicians, social workers, visiting nurses , etc. who > would most likely have this important contact. Having PD and having lived > and worked in this area gives me a certain amount of credibility. The plan > is to give such a packet of information to the PWP and seek their > permission to have someone [me initially] call on them to go over the > packet and/or try and answer any other questions within a day or two. With > their permission I will continue to send [or more likely hand deliver] > updated or new information for their packets. > The Acton-Concord area of Massachusetts is a fairly close knit area > and I think that we will be able to initiate and maintain contact with the > vast majority of PWP. May be too ambitious but we need to try. Only a small > number of PWP use the Internet so perhaps we will be providing a useful > service. I've had some recent contact with Margaret Tuchman and she > encouraged me to put this idea out to the list in hope of sparking others > to give it some thought. > > My questions for you: > > What do you think of the idea? > I think this is a great idea and parallels another idea......a packet for new members of support groups.......new members need to be welcomed and feel like they are getting something out of a support group and they are generally seeking information anyhow. The Early Onset Group here has had a packet they hand out for some time.... > > Would you be interested in putting together such a program in > your area? > Yes, count me in. I think it's got a lot of potential. > > Can you reccommend any articles for inclusion in my packet? > Yes I'll send you a package to consider when I can get it together. > > Special question for Ron, Don, Kathy, Millie, Jeanette, Marling, > Larry, Peter, Janice, Delda, Sid, Charles, Debbie and Murray. Would the > availability of such a packet been of some help to you? > Definitely would have helped. I think the gp's also have a need to know that such a package is available. My gp doesn't have very many people in his practice that are over 50 so no exposure to pd and thus no first hand experience or knowledge. > > Thank you > George > > > [log in to unmask] > > Thankyou George for great ideas.......................Murray . [log in to unmask]