hi all
this "welcome message" also serves as a "mission statement" of sorts
which will be re-posted [and revised] from time to time
according to LISTSERV recommendations
janet
list-elfette
-----------------------------------------------------------------
hello!
i am janet paterson [one tee]
sometimes known as the "list-elf"
welcome to one of the finest sources of information and support
for people with parkinson's [PWP]
and their caregivers [CG]
barb patterson [two tees - no relation!] the list founder
sometimes known as the "list-mom"
established PARKINSN
in november 1993
i discovered it in october 1995, 7 years after my own diagnosis
and count that discovery as a turning point
for me in dealing with pd
here are some list caveats:
beware flames:
robust and frank discussions - yes
personal attacks - no
beware sales pitches:
no overt commercial soliciting
no covert commercial soliciting
beware all netniks:
please note that none of us are medicos:
discussions here should not be construed as 'professional advice'
beware incoming e-mail:
we currently have 1800 members worldwide:
list message volume can vary anywhere from 20 to 60 messages per day
barb thought this was the best list description:
>----------------------------------------------------------------
>i cannot see the volume as a 'problem'
>whether there are 30 messages in one day or in one hour
>whether they are all about pd or not
>whether they are all about snake oil or not
>
>they reflect the living breathing organism
>which is this cyber-family
>
>we are not a corporation bound by company rulebooks and standards
>we are not a school bound by a curriculum and exams
>
>we are part of a new frontier of democracy
>where each one of us has
>the same opportunity to be heard as everyone else
>and
>the same right to speak as everyone else
>
>personally
>i find it awe-inspiring just as it is
>-------------------------------------------------------------------
below please find
a welcome message from barb patterson
along with a summary of the list subscription instructions
please contact me if you have any questions or need more info
or visit the PIEnet section of my website [URL below]
which i have dedicated to this
marvel of a medium
janet
janet paterson
52 now / 41 dx / 37 onset
snail-mail: PO Box 171 Almonte Ontario K0A 1A0 Canada
website: a new voice <http://www.geocities.com/SoHo/Village/6263/>
e-mail: <[log in to unmask]>
===========================================================================
Welcome!
You have joined the PARKINSN mailing list also known as the Parkinson
Information Exchange Network [PIEnet].
Please send a message to the list members (if you want to) introducing yourself
and any Parkinson's-related topics you would like.
Let me introduce myself. I am a secretary for six faculty members in the School
of Nursing, McMaster University. In September, 1992, I was diagnosed as having Parkinson's ... hence my interest in this list.
My purpose in starting the list was the exchange of information about
Parkinson's. The list rapidly changed into the largest support group I know.
Besides its original purpose, the list has become 'a means of feeling connected'
to other members... a way of feeling we're not alone... of making the road of
life with pd easier to bear.
I have always felt that we hear each other better on the list because we can't
see each other. Symptoms, age, colour, race, don't interfere. The list knows
no countries, has nothing to do with money... there's no "what's in it for me?"
But these same qualities mean our words are open to misinterpretation. Since
others can't see our wry smile or wink or hear our tone of voice, a goal of
keeping it "short & sweet" can result in appearing abrupt. Also, the same word
can have different meanings and different shades of meaning to different people
in different areas of the world so care must be taken in writing and reading of
the messages..
Be kind. Be honest. Share the time fairly.... if you think you have taken
more than your share of the list resources, you just might have. Keep it
generally related to Parkinson's. Don't abuse the generosity of the University
of Toronto's free gift of the list. Don't include all of the message to which
you are replying. Use plain text with no attachments. Wash your hands with
soap before you eat. :) In other words, use the same common courtesy that you
would elsewhere.
We need everyone's voices if we are going to make a difference in the care &
treatment of pd and the motivation and funding of research. Speak up. Tell
your story. Ask your questions. Answer questions. Debate/argue about the
answers. Debate/argue about the goals, administration, day-to-day functioning
of the list. Tell a joke... but please don't attempt to silence anyone else's
voice.
The messages on the Parkinsn list may be personal but they are NOT private...
never have been. The illusion of privacy when using email is just that: an
illusion.
Never, in the known history of this planet, has this kind of relationship
existed. We meet in a place that has no walls. We talk to our friends whom we
have never seen. We care deeply for other members whom we will never physically
hug. Folks, we're making it up as we go along so any rules have to be flexible.
I hope you enjoy your involvement with the PIEnet.
Barb
===========================================================================
Barbara Patterson [log in to unmask]
HSC 2J22 905-525-9140, ext. 22403
School of Nursing
===========================================================================
Subscription Instructions: The Short Version:
List Address: for posting a message to the PARKINSN listmembers:
[log in to unmask]
Command Address: for sending a command to the LISTSERV computer:
[log in to unmask]
To obtain a list of the commands that the listserv recognizes:
HELP
To obtain your current subscription options:
QUERY PARKINSN
To receive copies of your own messages:
SET PARKINSN REPRO
To change from individual messages to the digest format:
SET PARKINSN DIGEST
To change back to individual messages from the digest format:
SET PARKINSN NODIGEST
To stop incoming mail temporarily:
SET PARKINSN NOMAIL
To resume incoming mail:
SET PARKINSN MAIL
To stop incoming mail permanently and terminate your subscription:
SIGNOFF PARKINSN
To subscribe, send this command:
SUBSCRIBE PARKINSN YOURFIRSTNAME YOURLASTNAME
more detailed instructions are on the World Wide Web at:
<http://www.geocities.com/SoHo/Village/6263/pienet/subs/>
