George....
I'm reminded of my initial introduction to the "world of PD" which began with
my then new neuro NAMING the disease but other than telling me it was an "old
person's disease," (groan) he never told me ABOUT the disease. Instead, he
gave me the brochure of that big PD association in Florida (I can never recall
it's name - unconsciously mentally blocking it, I betcha) and told me to call
THEM for info about the disease.
Sooooo.... I called them at their handy-dandy toll-free 800 phone number and
got the world's most sour receptionist! She wouldn't forward my cal to anyone
so I could DISCUSS and get informed about Parkinson's, but instead, said she'd
send me their info packet. Then she hung up on me...
While waiting for the packet to arrive I called a local support group that had
a phone number listed in the daily newspaper. The lady who answered the
phone said "How are your eyes?" My EYES? I started to cry all over the
place at that and hung up on her!
That ONE CALL caused me not to go to a PD support group for over four years
because I had been so terribly frightened by her comment. My loss 'cause when
I DID finally join the support group I found that I liked and respected the
members and COULD have not been so alone with the disease initially when I
most needed the support.
Oh.. and that promised packet from the big Florida PD association? IT arrives
ten weeks after I called them! AND it was very sugar-coated, bland and
passively written. AND all the individuals pictured throughout the packet
were over 112 years old while I was about 46 at that time!
Could I relate? Not on your life....
Barb Mallut
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From: Parkinson's Information Exchange on behalf of George Lussier
Sent: Monday, February 23, 1998 7:28 AM
To: Multiple recipients of list PARKINSN
Subject: Curious....A LITTLE CLARITY
Dear Colleagues,
Re: The information Packet
+ A few of you were concerned about the inclusion of
articles about Pallidotomy..
Not to worry. In any final packet Pallidotomy articles
would be removed in favor of
a single article having to do with surgical options.
The reason the Pallidotomy
articles are still included is because it represents
my calling card. It's what my
Video is all about. No Pallidotomy, no video=no
invitation to speak
+ The same goes for the surgical still photos of me. No
need for them in a final
packet. Might even cut down on the number of my short
stories. Might not.
+ What I will use to determine the make up of the final
packet is my sense of balance
and will consist of about 15 articles.
+ One reader expressed concern "that some people, myself
included, are very
private people and might not want someone they
didn't know knocking on the door
with a packet of info. and an offer to answer
questions." I dont plan on doing much
"cold calling". Hopefully the primary care giver will
hand over the packet , explain
that someone is available to speak with them as soon
as they are ready and inquire
about what would be a good time.
ANYTHING ELSE THAT NEEDS CLARIFICATION?
george
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