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
>
>
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>
>
Thankyou George for great ideas.......................Murray
.
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