I read this list every day.  Every single message.  Out of the 150+ daily
messages, I find very little information on Parkinsons -- just the odd scrap
or two that can actually be applied to every day life.

My observation is that the majority of messages are from about 20
individuals who maintain a community and find comfort in communicating
amongst themselves about a variety of subjects which may or may not be
related to Parkinsons.  If there are hundreds of list subscribers, as the
list claims, then they must be part of the silent majority, such as myself.

This strong sense of community is somewhat intimidating and yes, it has made
me feel excluded in a sense -- as if I am an outsider looking in to a club.
Those strong posters who dominate the message board have (probably quite
unintentionally and unbeknownst to themselves) sequestered the list for
their own use through their bonding.

I have asked a few questions to this List in the past -- to which I have
received (a few) personal answers.  Despite that my questions were posted
publicly, I received private answers -- so the knowledge was not spread.
Since the thread ended quickly (1 generation), there was no further
discussion.

The environment is not such that, as in another list to which I subscribe, I
feel I can interject and jump in with advice, questions or comments.  In
fact, because I do not have Parkinsons, I was even told this was not the
list for me -- this was a list for Parkinsons support only, which I took to
understand that this is a mutual support List (and not a place where all and
any aspect of Parkinsons is discussed).   This is one of the reasons I read
only, but I don't participate.

Since my father (the PWP) is beyond the benefits of mutual support in terms
of the encroachment of the disease (he is quite ill) -- I merely look on
this list to see if anyone else is experiencing a similar situation and if
we can share thoughts on how to make it easier on everyone involved.

There seems to be some communication on the direction this list is taking,
so the above merely is a response based on my observations and experience.
I am not critical of the list.  And I am still thankful for the 1 or 2 bits
of information I glean from this list.

Sincerely,
-Robert




----- Original Message -----
From: "Simon Coles" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, December 09, 2000 1:23 PM
Subject: Re: Direction of the List


> Bob, and everyone.
>
> I haven't been following the discussion in detail, mainly because so
> little on PARKINSN is interesting these days.
>
> As is probably well known I have been concerned about the tone of the
> list for some time. Yes, the list has a sense of "community", but
> that is at the expense of people who can't share that community's
> values - be it in terms of mail volume, subject matter, or opinions
> that are expressed.
>
> The list has stayed broadly static in numbers over the past few
> years, despite a massive increase in the number of people on The
> Internet. I strongly suspect a large number of people are being
> driven off the list by a vocal minority who don't feel the need to
> consider the impact of their actions. As a result, thousands of
> people are failing to benefit from the wisdom and help that can come
> from this list when it is at its best.
>
> If people want a community list, then let's have one - SPARKLE is one
> example. Lets have more than one - I'll host as many as there are
> volunteers to run them.
>
> I'm not judging the applicability of any subject matter, all I'm
> asking for is for PARKINSN to focus on Parkinson's, which will make
> it useful to more people. Take all the other stuff onto other lists,
> which can be closely allied to PARKINSN, and part of the community.
>
> Its just as easy to subscribe to one more list as it was to subscribe
> to PARKINSN in the first place (well, probably easier), and we can
> regularly advertise the other lists on PARKINSN. This will give
> people a choice of what they get in their inbox.
>
> In this way the community can grow, become stronger, and more healthy.
>
> The alternative is PARKINSN will wither and die, a victim of its own
> success, and the selfishness of a minority. And we will *all* be the
> poorer for it.
>
>
> >I will
> >remain here for the next few days, waiting for people to *publicly*
> >post their true feelings about the points that I have been trying to
> >make (about offensive postings under the guise of "jokes").
>
> Count my vote.
>
>
> >  Unless I
> >see a majority of this List standing in support of sensitivity, I will
> >leave this List.
> >
> >Maybe my usefulness is gone, anyway.
>
> This, ladies and gentlemen, typifies the challenge facing PARKINSN.
> Why should anyone who wants to contribute to Parkinson's Disease be
> involved with a list that's long since got off track? What will
> PARKINSN be when the experts that have stuck it out so far have left?
>
> What's the point of an archive of the list when 95% of the posts are
> junk? Why should I put the effort into trying to find the useful
> stuff in the archive if no one can be bothered to stick to the
> subject matter?
>
> I repeat my offer to host any PD related mailing list - if you think
> there's a niche not being served, and are willing to help run it,
> drop me a mail.
>
>
>
>
> Simon
> --
> --------- My opinions are my own, NIP's opinions are theirs ----------
> Simon J. Coles                                 Email: [log in to unmask]
> New Information Paradigms                  Work Phone: +44 1344 753703
> http://www.nipltd.com/                     Work Fax:   +44 1344 753742
> =============== Life is too precious to take seriously ===============