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Eleanor -

We belong to both the PIEN list and the CARE list.  I've made some wonderful
friends through these lists - some I correspond with every day.  They're
there for us, and we're there for them, sharing the ups and downs of everyday
life.  Over spring break we flew to visit one couple (the husband has PD)
we'd "met" through the list, and found that we'd truly gotten to know each
other through our letters and phone calls.  It was like seeing old friends
again rather than meeting for the first time.  Without this list, we'd have
never met a number of friends who enrich our lives every day, and who are
going to be there for us (and we for them) as other friends drift away over
the years.

In addition, of course, there's all the information available on the list
that we never would have come across on our own.  It's valuable to us to be
aware of ongoing research on new meds, cures, etc., but even more helpful is
to hear the personal experience of PWP and caregivers.  When we want to know
if a symptom is part of PD or a side-effect of meds, we ask the list.  There
are so many obscure little symptoms that go along with PD that the doctors
aren't ready to recognize as such.

I could also mention that we've been invited to a number of support groups to
speak about Dick's DBS surgery.  We're always shocked to find how many PWP in
those groups haven't heard of the surgery, current research, new meds, and so
forth.  There are people out there living with inadequate or inappropriate
medication and suffering much-reduced quality of life without knowing there's
any alternative.  Many don't even know there's such a thing as a movement
disorder specialist.  People on the PIEN list are the ones who are going to
be knowledgeable enough to seek out and find the best care and best treatment
for them.

I'd strongly recommend a computer for *anyone* who is dealing with PD.

Margie Swindler     cg for Dick, 55/18