[re-posted twice monthly]
welcome to the newest PARKINSN list-member and cyber-sibling!
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:
none of us are medicos [unless otherwise indicated];
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
this is my favourite 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
e-mail: [log in to unmask]
website: a new voice <http://www.geocities.com/SoHo/Village/6263/>
=========================================================================
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/>
===========================================================================
