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Hi George-- In Ohio, the Central Ohio PD Assn. located in Columbus is now
producing an excellent set of introductory pamphlets to be given to newly-
Dxd patients by their doctors. You might want to be in touch with the Pres.
of that group, Michael Beetner  <[log in to unmask]> as some of their
experience might be helpful to your indertaking. I will send Michael a copy
of this post....good luck!

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>Second . The Plan, or at least My Plan.
>            A Few Assumptions
>                    MDs are, by and large, not the best people to share
>such a diagnosis as PD but of course they must
>because.............................You can fill in your own reason.  I do
>not say this lightly. I don't think physicians are especially mean spirited
>or nasty [although we've all seem to have meet our share].  What they often
>lack is the open sensitivity to speak beyond the diagnosis and they often
>don't know much about community resources for their sick people/patients
>
>                     Newly diagnosed PWP  don't hear especially well when
>informed of such a diagnosis
>as PD. So what you commonly have is two or more people engaging in a form
>of denial.
>Now, I happen to believe that a certain amount of denial is healthy
>but...........
>
>                      Not everyone is on the Internet.
>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?
>
>           Would you be interested in putting together such a program in
>your area?
>
>           Can you reccommend any articles for inclusion in my packet?
>
>          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?
>
>Thank you
>       George
>
>
>[log in to unmask]


  Camilla Flintermann, CG for Peter 79/8
  Oxford, OH
  [log in to unmask]
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