The following are comments in no particular order which are only
slightly edited for relevance e.g. personal messages to me etc.  I tried
to get them all but may have missed a few,  They are reported without
identification as to author.  I tried to eliminate references which
might identify the writer.

Charlie

  I think the sheer volume of mail overwhelms some people   Encourage
people to read only
what they can, and delete the rest.)  Teach people how to delete "en
masse" thus simplifying the
process.eg.  on aol we have the capacity to click the ignore button on
messages I'd rather not
read.  After doing so,I hit my new mail option.  All the messages with
the red check go to old mail
and are not in my way.  I usually go to old mail, select all messages
and delete.     I use to be on
Digest formerly and many went unread.  I periodically deleted them when
I conceded I wouldn't
read them.
  I highly recommend setting up a separate  account for just this list
Since doing so myself, I now
get mail individually (instead of digest).  I usually go through every
piece albeit some in a blink of
an eye.       People on different mail systems be on a list as coaches
to others on the same system
(as they vary greatly from what I can gather) I  have seen more
resignations on the list in the last 4
or 5 months complaing about too much mail, than I have in the four years
I have been on the list.
I am not going to leave the list, but my use of the delete button is
increasing. ( An annoyance
more than a problem).
PS    Maybe a FAQs list could be developed, approved by Barbara P. and
posted so it would be
easily be accessible to everyone on the list.

I feel a little uncomfortable about the strength of my feelings, because
I believe that for many
participants the listserv is a major source of comfort completely aside
from its informational value.
I am not a PWP, but a xxxxx.  I want to understand the community in part
to enable me to be
more effective in my job ..., but I also want to help a lot of very sick
people, some of whom I have
been lucky enough to meet in person. Nevertheless, I have considered
leaving the list many times
in the six months since I joined, just because it takes a lot of time
even to delete many messages
without reading them based on the first lline or two.Rather than plow
through the whole thing, I'll
just say that most of the time I like the List the way it is.  I do wish
people would stop hitting
"Reply" and thereby repeating some long letter that wasn't all that
great the first
time around.  They've been asked before to do this.  Perhaps we could
ask again.  "I agree"
comments are also tiresome and take time and space, needlessly.

I have a friend on the CG list who left the PD list because her PWP can
use the computer and she
wondered why she should take up her time reading "his"stuff.  I stay on
the List because I find it
helpful and because my husband's tremor is too bad for him to use the
computer.  I would be very
sad if the List were turned .into PD-related ONLY material by
List-Nazis.  The humor
really helps..
Rather than plow through the whole thing, I'll just say that most of the
time I like the List the way
it is.  I do wish people would stop hitting "Reply" and thereby
repeating some long letter that
wasn't all that great the first time around.  They've been asked before
to do this.  Perhaps we
could ask again.  "I agree" comments are also tiresome and take time and
space, needlessly.

I am not sure what the purpose is ,  it appears to be good for relieving
and giving stress.. I am a
care giver and wanted to find out more from the PWPs It does that for
me, most of the time.. This
is like a large family. Some you would just as soon never see again (or
hear from)  delete, delete
(to some people I may be one of those)

This list should be wide open. As long as they stay reasonable polite.

One thing that bothers me a lot is that there is not much political
activity reported on (political
activity, writing to the committees that hold our future in their hands)
I don't understand why.
Letters from 1600 people could get research going and paid for. No
matter what it will be too late
for my xxx, but I am writing and writing.I also think that at  this time
of year,

I know you want to be more scientific, but you can delete me. I think
those jokes are important
for people like Don. I enjoy most of them and send them to many friends.
So now I have told you
more than you want to know

Thanks for helping us all in taking look at this. Basically, the non-PD
postings seem to be more
and more frequent.Yet, I feel supportive of giving list members that
license. Maybe the list could
be organized into two sections: DIRECT PD INFO AND QUESTIONS and OTHER
POSTINGS. The digests could appear with these (or similar) labels so
that list members could
focus on what they want to.

 Perhaps just sending out the survey will have the desired effect.

I think the fact that the list has stayed static at around 1,600 people
forsome considerable time
shows that we are turning a lot of people away The irony is the people
who are still on the list are
there because they don't mind the volume - the people who do have voted
with their feet and
left. And when then leave the list they are left without a support
system IMHO kind of selfish of
the people currently on the list.

People who we really want on the list (Doctors, other knowledgable
people) are quickly put off
because of the amount of non-PD drivel on the list.

 (Comment:  The problem is, how do you decide who to tone down and who
notto?  Janet's
postings are frequent, but almost always of great value.Others who post
often I generally don't
bother to read.  We have 1600+individuals.  It's a democracy in the
purest form.  Let's not try to
put any one member in jail!)

Reiterating the "guidelines' may help (by Barb in her welcome message,
for example, and/or by
Janet in reminders of list protocol and help available.Nothjing is going
to fix everything on an
open list ---nor should we expect it to. Tolerance and a finger on the
delete key are or fall-back
positions.  But could we perhaps suggest that no ONE person post more
than ONE joke per day?
owever, I think you are surveying the wrong factor.  I suspect that for
most members the issue is
‘relevance’ rather than ‘volume’.  I know they are related but my view
is that readers would
accept the volume if they regarded messages as relevant.‘Relevance’ of
course is in the mind of
the reader.  But this confusion can be overcome if the List owner simply
clarifies and states her
views on message relevancy to Listserv  newcomers.  This can be done in
her traditional letter of
welcome.  Knowing what the ground rules are before one joins and
therefore what one can expect
from the Listserv in terms of message postings should largely circumvent
member dissatisfaction.
I include expanded answers to your survey to clarify my views.  Forgive
me if it lengthens the
time required to read and record the data.
I realize that sometimes messages are posted twice (1 to PWP and 1 to
CG); that some people
haven't learned to delete all the extra messages about addresses, mime,
etc.; and I know that
sometimes we need help in "setting no mail"but...I think we need to try
harder to send some
replies directly to the sender and not to the whole list, especially the
"I agree"s; we need to work
harder to "Snip" or delete all the parts of a message EXCEPT the part we
are replying to; and
personally I see no reason to edit others messages....I can understand
the first message just fine.
I have no problem with the content of messages...poems, jokes (those
that tend to be sexual in
content, I would not find acceptable --- not because they would bother
me, but if it was one I
wouldn't tell my motheror grandmother, I don't think needs to be posted)
even discussions
on politics, or religion.  As you know these last three...sex, religion
& politics...all cause problems
when someone misunderstand what someone is trying to say.  So where does
this leave us...back
to discussing PD only.  We all know that there is more to life than
that. There's caring, laughter,
understanding.One of the biggest problems is numbers.  There are at
least 1600 of us & our
families. Just that in itself, makes it a little hard to see that we
cancome to full acceptance of what
needs to be changed...., I'll just continue to try to scan quicker &
delete.

This seems to me, and to others I have chatted with, that the problem
has less  to do with volume
than it does with the content of the messages sent by a handful of
contributers. There are a very
few members who consistantly clog the list with personal responses to
individuals and a larger
number who continue to include the entire message they are responding
to.I can understand
the frustration of those who snap and snarl,and thus cause a spate of
messages in response. I use
message filters to block out chronic offenders, but I still have to
spend too much time deleting.
Even worse, the trivial personal messages and the redundant repeat
messages are clogging up the
valuable archives. We are an independent and assertive bunch. We need a
simple, clear set of rules
to follow with consequences for chronic offenders. What those rules and
consequences  should be
can be determined by the members.E: Question K - Many may believe there
is a problem.but aside
from asking   people to honor certain guidelines - like addressing
replies to the person, not t he
list, and limiting non related postings, it doesn't seem there is really
anything to be done about
it.The net is the ultimate democracy - maybe it's actually a good thing
it is. Let people write what
they want, and complain too - none of us haveto listen if wedon't want
to.Many may believe there
is a problem, but aside from asking   people to honor certain guidelines
- like addressing replies to
the person, not t he list, and limiting non related ostings, it doesn't
seem there is really anything to
be done about it. The net is the ultimate democracy - maybe it's
actually a good thing it is. Let
people write what they want, and complain too - none of us have to
listen if we don't want to.I am
disgusted with the attitudes of some of the more vocal members of our
list.   I joined to post when
I have something worthwhile to say about PD and to read about PD so that
I can stay informed.
And Icertainly  don't mind the jokes and some other diversions.
However, there seems to have
formed ,over time, a clique who post continually  to each other with
"insider comments" , private
messages, etc.  and , heaven forbid any of us foreigners to make any
coments or suggestions to
any of the insiders .  It seems at times that the pack will attack to
protect their own.  If there were
another source for information as good as the list , I would be long
gone because i do not feel that
I have the energy after 30 + years wiht PD to try and correct the
problems.I know the above is
only my opinion and if this were posted to the list ,  I would probably
be crucified

I left the list about 6 months ago due to the non-PD volume of mail that
I had to wade through to
get to the more important and meaningful items contributed by folks like
you. I rejoined and what
should I find? Nothing but the fact that nothing has changed.

I guess my biggest 'gripe' is that too many people haven't learned to
use the technique of
determining what is relevant to most on thelist and what should be
directed to a single individual.
But it isn't my call to restrict the use of the 1st amendment when I
have the power to pull the plug
so I am not bothered or offended.

 [should be 100 responses +/- to be worth a damn]

lately only "problem" I see is volume; much of the long, boring strings
between members is gone
most of the volume is worthwhile stuff encourage Phil's suggestion of
using mailboxes to organize
& filter mail by providing detailed       instructions for the various
mail programs[Pegasus,etc.,. by
volunteers

more gentle, polite, occasional, non-sarcastic public  chastising of
ignoramus's who keep posting
thank yous, etc.THere are from time to time inappropriate messages.
However, as a rule There
is usually help, or at least, a chance for people to express
themselves.  We need a sense of humor
although it should be in good taste, which it mostely is. We need people
... who provide
intelligent, reasoned and informed messages.  We also need those who
share their faith and
uplifting message.  We also need the advocates for the cause of finding
a cure.ALso, there is the
DELETE key.  It is very useful and I have learned to skimm and pick what
is approriate for me.

I think this is one of the best lists I have seen, although I realize
that from time to time some
people need to be reigned in.

because by the very nature of the beast, you'll only get a one-sided
consensus; besides I doubt that
you will get over 200 reponses to this stupid poll-so I don't see how in
the world you could even
consider that response to be a meaningful over-view of  the likes or
dislikes of the "list." Thank
you for letting me stick in my 2 cents worth.

There are too many messages that are non pd.

Many letters and responses could be sent private.  If
senders would just
ask themselves "Is this message of value to the list or
to an
individual?" before sending.  I suspect that some of the
list members
are not sure how to send/reply to an individual.


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Charles T. Meyer,  M.D.
Middleton (Madison), Wisconsin
[log in to unmask]
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