Dear Colleagues,
First. The Follow Up
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
Millie- A couple of people mentioned Duvison's book. Was
this the book you were
shown?
Marling & Sid Do you recall what the brochures you
received were all about?
To the list members at large
Does everyone receive their diagnosis from an MD?
Did any one receive a packet of information like the one
I've listed below?
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
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