Greetings, Katie--
As a new member (I believe) of the PIEN you would not know that we're
danced this dance, or something like it, before :-(
We've debated having separate lists--we DO have CARE for caregivers and
SPARKLE for non-PD humor, etc--and urged folks to label their posts
appropriately, send personal messages offlist, etc, etc, etc.
There are many CGs on this main list who learn here about how to help their
PWPS--and it is very important to us. PIEN was never intended for "PWPs
only", and we have many professionals--nutritionist, pharmacist,
psychiatrist,neurologist, ophthalmologist, dentist, counselor, to name a
few--who may or may not be PWPs but who make valuable contributions to all.
because we are nearly 1900 strong, in more than 30 countries, it is to be
expected that at times there will be differences of opinion, perception,
and interest. And as is true for every group I've ever belonged to, most
members tend to lurk, read, learn and post infrequently. When the
discourse is dominated and skewed by a few, that needs to be
addressed---and that is what you have just observed here. Because this
list--a great gift from Barb Patterson and the U. of Toronto listserv--is
not moderated, these things have to work themselves out, rather than be
handled summarily by a moderator or list owner. In other words, we all
need to practice self-discipline . When that at times fails, the wisdom of
the group tends to win out, and I think that has happened now.
Your concern about the post you interpreted as ridiculing a PWP who had
fallen has already been addressed---probably the origin of that exchange
was before you joined PIEN just 8 days ago, so you couldn't have known
how it was really intended.
I also believe (hope? pray?) that we now all understand that the objection
felt by Bob Fink and many others was NOT to HUMOR as such, but to "jokes"
which relied for their effect on putting down a person or group, and that
as this is a public forum which can be (and is) read by ANYONE surfing the
net, they are inappropriate.
You wrote also:
"....... 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.
If I had a quarter for every time that has been urged, I'd be a wealthy woman!
And:
>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 hope you have reconsidered the idea that only PWPs are welcome here. That
was never the intention, nor would it benefit PWPs in the long run, if only
because they need their CGs to be educated about PD too ! I can assure you
that there is MUCH personal offlist communication all the time. But also
that often an answer to a question can benefit more than the one who asked
it, and that is wehy things may be on the list, even if raised by only one
person.
As a new member you have a right to express your concerns,and raise
questions, especially as you came into the group at a stormy time. I hope
by now you have a broader view, and will hang around to share and learn and
get to know us better. And BTW, if you as a PWP have a CG of your own,
whether living with you or at a distance, who would like to join CARE,
please feel free to tell them about it, and have them write to me.
Camilla Flintermann, CG for Peter 82/70/55
Oxford, Ohio
<[log in to unmask]>
on the web at http://members.tripod.lycos.nl/genugten/flinterm.htm
and also at http://www.geocities.com/camillahf/index.html
"Ask me about the CARE list for Caregivers of Parkinsonians ! "
And visit the CARE webring at
http://www.crosswinds.net/~caregivers/index.html
