Hi George:

I agree with Murray and Mary about the project being extremely worthwhile but
the introduction of a lot of information about pallidotomy or any other
procedure done for more advanced PD is likely to be counter-productive.

You are right that MD's often do a poor job of telling people about a serious
illness.  Some soft-pedal it  e.g.  "maybe you have PD but we don't know for
sure
(when he is 95% certain)".  Others click into a clinical mode,  and give the
information in a cold clinical way.  Others are more supportive and answer
questions and try to educate.  The question  I have is whether anybody is the
"Best" person to give this kind of information. A physician rarely has enough
time
especially if the diagnosis is made on a scheduled office visit.  Should he hold
back the information until he can clear an hour in his schedule?  I don't know
the answer but I know that most MD's are scheduled fairly tightly and I also
know that I would like to see MD's give at least 30-45 minutes which is the
minimum time necessary to even begin to deal with that kind of issue in my
view.  The time problem and the fact that the job is unpleasant and nobody likes
giving a serious
diagnosis.  A number of patients will be either angry or devastated by the news
and frankly there are few people equipped to deal with the initial reaction.
Many MD's just cop out rather than confront their own inadequacies.

Different people react differently to hearing a serious diagnosis.  Some will be
angry at the doc no matter how much time they give.  They confuse the messenger
with the message.  Many will ask few questions initially as they are stunned
when they hear the news,  Many will use denial and minimize the accuracy and
the seriousness of the diagnosis.

How docs deal with these issues with patients can certainly be improved and
your idea of a packet is an excellent idea.  An invitation to call a particular
PWP to provide personal contact-  with the implicit message that PD is bad but
it isn't the end of the world.  And of course info about local and national
groups I feel should be included so that they might just show up anonymously to
a meeting.

One more point, contrary to popular opinion denial can be a useful mechanism
especially early in the illness.  Don't try undermine it in any substantial way.
For some people it is true that the illness progresses very slowly.  How many of
us assumed that they were going to be part of that group.  How many of us
refused to believe the diagnosis.  We
need that to make it from day to day and accept info in small bytes (don't
forget internet info).   I think the idea of a packet written by PWP is
excellent.  It allows people to ignore the literature if they choose and then go
back to it as they are ready to take in more data.

Good luck.

Charlie

George Lussier wrote:
>
> 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
>
> [log in to unmask]

--

CHARLES T. MEYER, M.D.
Middleton, WI
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