Now wait a minute!  I was just beginning to think that I was part of
something when this new fray began.

Heck, I listened(and sometimes responded)during the stem cell todo and read
the postings re the political arena.  Now because of poor taste on some
members' parts, and threats on other members' parts, this list is beginning
to disintegrate.

Can't be allowed.  Fighting for what is right does not mean giving up.  It
means putting on the boxing gloves to protect something that has enabled
you to make your one day at a time.  None of you I've listened to during my
short time on the list has survived this way.  You've battled this
insidious disease in most creative ways.  Now is NOT the time to give up!

Now, understand, that doesn't mean we can't make some changes.  For
example, some criticism refers to a lack of concentrated PD news.  Easy
answer.  Those members can move over to PD News.  All the fluff is gone;
all the latest scientific information, all the latest re PD is found there.


Another criticism has been about some bad-taste offerings(and I side with
the critics here).  No problem.  We, that is WE, develop a set of
understandings for this list that we all agree to respect.  Everyone who is
on the list is sent this set of understandings.  Anyone who doesn't agree
can leave voluntarily or can be removed.

The third criticism pertains to the chitter chatter, the comraderie of this
list.  Others may not agree(you are certainly permitted)but here's how I
see this part of the list.  Unlike the scientific information that gives us
hope for ten years down the lane, comraderie is every day.  It is someone's
ability to touch base with others who feel the same way.  It is
encouragement.  It is a touch of the real world.  It is being fearful all
night or harried all day.  It is not knowing if one can make it through.
Yet just a simple few keys of the PC, a note from an unseen friend, and the
strength and courage to face this insidious disease head on returns.  For
even a brief time the black hole of PD is covered with light!  Comraderie
is part of this list and belongs here!

We are basically an intelligent lot(patents and caregivers).  Experienced.
Educated.  Sometimes cliquish.  Often possessive, especially when it comes
to this list.  Why, do you suppose?  Because it is something to hold
tightly for it brings a belonging?   Because unanswered questions burn in
our brains?  Because movement becomes more difficult, and we're trying to
survive the day?  Because quality of life is vanishing before our very
eyes?  Because we can no longer handle the frustration?   Because we want
someone out there, whether it be patient's or caregiver's need, to "touch"
us, to let us know that we are not alone?   Because we pretty much know our
futures, and there's an aloneness and a void that cannot be happily filled?
 Or because we feel ownership, friendship and kinship toward something that
brings us together that offers stability(it should, once did)?  Each of us,
I'm sure has his/her own response.

Having said this, let me also say that many stand at the gate who don't
feel they belong.  They don't feel a part of what is transpiring  If
they're not interested in SPARKLE or PD NEWS, they may want to get through
the gate to the List.  Those who know their way, need to push open that
gate.  They need to share the comraderie and information on coping skills
which are so graciously shared here on the list.  Those who know their way
need to mentor the newly diagnosed, allay fears, be available for sometimes
there is no one else who seems to understand.

Don't give up, my friends.  Be patient.  Fight this fight.  We need each
other.  Along with learning the latest PD information, we need a place
where PDers, PD+ers and all the PD relatives can feel free to be themselves!

Respectively submitted,

E of the headdress