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I am recently back to the list after being away for
several years.  Frankly, I got totally involved in trying
to maintain my employment and family life while dealing
with PD and just didn't have time to do anything but
glance at the list during that time.

Like Lisa, shortly after coming back to the list, I was
asking: "what happened?" But I remember about 5 years ago
when the list was very helpful to me for information and
support.  That was also about the 5th year for my dealing
with PD and a time when PD really began to be a problem
for me.

Well PD is unfortunately a progressive disease.  I found
that I couldn't continue to maintain both employment and
family life, so I chose disability retirement.  I still
haven't completely adjusted to disability retirement.
But I have time to participate in this list again.
Hopefully it will continue to be as helpful to PWP and
their loved ones as it was for me 5 years ago.

Charley
50
> Hi, folks... Looking back on the last few weeks' messages, and in
> particular, the last few days, I think we all need to take a step back
> and think about our priorities and perspectives.
>
> The Guidelines for the parkinsn list were developed earlier this year by
> a group of members to clarify our goals and purpose and to make the list
> a friendlier place to be.  The guidelines are not very stringent; they
> are mainly concerned with keeping the topic generally on living/working
> with pd and offering information and support.
>
> I think we each remember very clearly the day we received the diagnosis
> of pd.  I know I do; I didn't know anything about it and didn't know
> anyone with it.  After a few days, I started reading everything I could
> find in the library about pd.  One of my goals in starting the parkinsn
> list was to provide a 'place' for the newly diagnosed pwp to find
> information, support, and the knowledge that, indeed, there is life
> after pd.
>
> World events in the last few weeks have certainly changed all of our
> lives in many ways and probably will for some time.  The horror and
> heroism of Sept. 11 will echo through our hearts and minds til our dying
> days.  The rage and hatred and evil exposed within one day were
> appalling.  The courage and love expressed within one day were
> inspiring.  There is no way on earth that we could help but discuss and
> share our pain about those events with those we care about, including
> the members of this list.  Those events colour and shape our lives;
> those events have an effect on our symptoms and, in some cases, on our
> treatments.  I sincerely hope our American members know how much the
> rest of us care.  But, in keeping with our own Guidelines, perhaps we
> could focus more on pd now.
>
> Regarding list management problems recently, I can only say that we are
> doing our best.  It is extremely difficult to balance the rights and
> needs of one against the rights and needs of others.  This list doesn't
> just belong to me or to John Cottingham...it belongs to all of us.  We
> all have to work together to make it work.  When the postings of one
> person cause another person to feel unwelcome or afraid to post, what
> can we do?  EVERYONE and ANYONE is more than welcome to join us and take
> part in this forum keeping in mind the rights and feelings of others.
> John & Camilla & I (among others) agreed that the 'review' option (where
> a specific member's messages were sent to the list owners to review
> before posting) was becoming necessary.  It wasn't what we wanted; it
> wasn't aimed at any specific person; it also hasn't been used very
> much.  But, unfortunately, it has proven to be necessary on occasion.
>
> This might be a good opportunity for each of us to pause and think
> before we post messages to the list...  What is the point of the
> message? Will it make others feel better or worse?  Will it provide
> support and information or will it degenerate into a flame war?  Are we
> posting for the good of others or to feed our own egos?  Would
> reflection change our response?  Is this the type of message I would
> have appreciated reading on the day I was diagnosed?
>
> In closing, I would like to tell Camilla and Michel how much we all have
> appreciated their contributions to this list.  Between them, they have
> more pwp information and know-how than any room full of PhD's.  Their
> love and caring for their pwp's was very evident to us all.  I sincerely
> hope that they will feel comfortable dropping in on us if they wish.  We
> all benefit from their wisdom.
>
> Last, but certainly not least, I hope you will all join me in offering
> John Cottingham (and his mother) our deepest sympathy in the loss,
> within two weeks of each other, of his two brothers this past August.
> John, I am truly very sorry for your loss.
>
> Barb
>
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