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I almost had this done, and then it disappeared; obviously I  must have PD--I
hit some key or other that caused this.  I have no idea.   I  actually hope
that this did disappear into computerland and that you did not get a fragment
of it because I would like you to read this in its entirety.

I was diagnosed with PD in l997.  I took a disablity retirement this year.  I
was a lawyer, a trial lawyer.  I am 50 years old.  I am a female,  and Tarzan
is my cat.  This year I had my first conversation with a person with PD, and
it was an invaluable experience.  I want, I need, to have contact with other
people who have PD.  I joined this list so that I could talk about the
disease with people who have PD and so that I could obtain current medical
and legal information about PD.

I have had this service since 12/2, and my observation, so far, is that a
core group of women, and a few men, monopolizes the list and that that group
tries to dictate what is "right" and what is "wrong," for the list, even in
regard to what is defined as a sense of humor for the list.   I am amazed
that there are 1500 people on this list, but I quess everyone is like me: we
are so busy trying to figure out, before we click--or 6th click or 8th
click--what we should delete that we have no time left for making a posting.
Whatever the reason this core group does the postings and controls the mood,
and the mood swings, of the list.  There are a number of postings which are,
in one form or the other: "I agree with you, you are a lovely, sensitive,
kind, marvelous, etc. human being" or I don't agree with you, you ugly,
insensitive, cruel, disgusting, @#$% of a human being.  Don't forget all the
huggs and kisses and other terms of endearment thrown about.  And, finally,
those announcements:  you don't agree with me (you don't like me anymore!)
and I'm off the list or Dr. Fink's variant of show me that you agree with me
(that you still like me) by a majority or I'll go off the list.  I have great
respect for Dr. Fink, but it is disappointing to me that he has, in this
limited manner, fallen into the behavior pattern of the core group.  But Dr.
Fink:  Please stay; there are very few, rational voices on the list, and I
agree with you, so you must stay.

I am inundated with postings from this service--I can no longer find the
phone bill or the e-mails from my friends.      And the grand majority of
these postings come from people who are caregivers or non-PD:  the interests
of those persons are very different from mine.   I do not understand why
these persons play such important roles on the list.   I stumbled onto a
series of postings from two female caretakers who were laughing, no,
chortling, about their husbands/loved ones with PD who had fallen in the
bathroom.  I understand  that these women need support, need to vent, need to
laugh,etc. However, I have PD.  Sometimes I fall.  I do not want, at any
time,  to read that a PD person's caregiver/loved one thinks that this type
of situation is hysterically funny--and particularly where there is a
discussion of how the PD person's limitations have resulted in an
exacerbation of the situation and, therefore, an upping of the funny quotient
of the situation, and, therefore, of the posting.  If  non-PD people have to
leave that type of posting,which seems to me to be a matter solely among
caretakers/loved ones, non-PD people, why can't they use a different listing
service; e-mail each other directly and not use this list; or, at a minimum,
label the title of the posting appropriately so that I know not to open that
posting.  Well, I quess that shows that I have no sense of humor--none
whatsoever.   We need non-PD people, who have had experience with PD-people,
like the good Dr. Fink,  to help us on this list, but I think that the list
needs to take measures to discourage such active participation of the
caretakers and other non-PD people on the list.

Then there is the issue of Mr. Hawkins' postings, his jokes.   I agree with
the prior postings by Dr. Fink and others re: the sexist, and illegal, nature
of those jokes.   If Mr. Hawkins had posted those jokes in a workplace
environment, he probably would have been discharged by now.  (I know this
stuff: I have a master's degree in industrial relations in addition to the
law degree; in the past I taught employment discrimination, including
sex/gender discrimination and sexual harassment at a Big 10 university).
This is a legal issue for me.  And, the issue is whether the joke is
offensive; the issue is not whether the joke is funny.    I understand that
people have different senses of humor based upon their age, sex, etc. and
that there has been lots of controversy re: whether these jokes were funny
and whether certain people have senses of humor.  It also appears to me that
Mr. Hawkins took a great deal of delight in "stirring the pot."   I would
guess he was rather disappointed when all those women sent postings in his
defense after the first joke.  By the way, I have not heard an offer from him
to get off the list-- oh, he's probably having way to much fun to even
consider getting off the list.

What to do?  I did not know about Sparkle until today, and that is an obvious
option.  But, If these people keep insisting on hanging around the list, I
would suggest the postings be labelled every time, and in accordance with
content  of the posting, i.e. joke, poem,personal comment, venting, or
whatever.  Then I can make an early choice to delete or to enter the fray.
I would suggest, and it seems to happen often as it is, that a non-PD person
be identified as such on the title to the posting as well.  It is amazing to
me that there not more indivualized contact off the list; lots of these
postings involve a very small number of people.   I do not know if there is
contact off line.  I do not know what the other 1500 people are doing, but
changes in the list ought to be made so that there is greater participation
or so that there is a presentation of material which appeals to more people.

With much trepidation I send this out.