Not many postings?
Liz Welker
I've noticed that the bulletin board for sleep apnea has lots of
postings - but there's not too many here. How come? You think maybe we
can't stay awake long enough to post?
<<<Liz>>
Nate
Liz Welker wrote:
Good one Liz! I too am a narco. Have been for about 10 years. This
support group needs more humor and support. This is the first time that
I have seen this web sight and hope that it remains. Lori
Mdiletante
Liz Welker wrote:
>You think maybe
>> we
>> can't stay awake long enough to post?
>>
>Liz>>
And Lori wrote:
>Good one Liz!
>This
>support group needs more humor and support.<<
This is a pretty new group. People post-don't get an answer-and
move on. There seem to be a number of lurkers. In addition, a crank
cross-poster was on for a while at the end of November-beginning of December
.Since he stayed in his own thread I just marked him 'read' and went on.
Lori, you're exactly right about what the newsgroup needs and you
and Liz (and some others whose posts I've lost) look like just the ones to do
it! Know any good jokes?
There are several people on aol who've posted here an it's having
it's own internal problems. I had 6-8 threads marked unread (including three
of Liz's and one I'd posted on) yesterday and this morning my screen was wiped
clean except for Lori's post.
Hope to
see more of you,
Martha Winslow
M Winslow
Dana Groff
Liz Welker wrote:
> I've noticed that the bulletin board for sleep apnea has lots of
> postings - but there's not too many here. How come? You think maybe we
> can't stay awake long enough to post?
I am not sure *exactly* why there is not a lot of traffic here. A couple of
reasons:
1) many people are not willing to post -- in a public forum -- that they
have narcolepsy.
2) people are using other on-line resources.
One resource is the Narcolepsy InterNet email-based distribution list. (for
more information look at URL:
http://www.transarc.com/~groff/sleep/Ninfo.html ) AOL users also have some
resources available for them. Recently, people have been using ICQ for
chatting.
To join the Narcolepsy list, send email to:
In the body of the message indicate:
do you want normal or digest distribution
Your full real name.
Are you a person w/ narcolepsy (PWN), a partner or family member of one,
a caregiver to people with narcolepsy? (yes/no is all that is needed)
(ideopathic or essential hypersonmia is treated the same as narcolepsy)
Mature subjects are discussed. Are you over 18 or have you obtained
your parents permission to participate? (no/yes is all that is needed)
Subscriptions are handled by hand and may take a few days. While you are
waiting -- read the Ninfo document specified by the above URL.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Dana Groff Transarc Corporation, Gulf Tower, Pittsburgh PA 15219
gro...@transarc.com VOICE: 412-338-4428 FAX: 412-338-4404
http://www.transarc.com/~groff/Home.html #include <std.disclaimer>
ly...@oberon.adsnet.net
>One resource is the Narcolepsy InterNet email-based distribution list. (for
>more information look at URL:
>http://www.transarc.com/~groff/sleep/Ninfo.html ) AOL users also have some
>resources available for them. Recently, people have been using ICQ for
>chatting.
The narcolepsy e-mail list is an excellent place to get
information and meet people. I'm on it, and have found it invaluable.
If you are into chatting, we have an ICQ group for narcoleptics
only at ICQ#4886217. You must request authorization, and please state
that you are narcoleptic. We have specified chat times, but the room
also remains open most of the time so that members of the group can
meet others who may not be on their list yet(your identity is always
anonymous, unless you choose to give your identity away...).
Discussions can be on anything, as long as nobody in the current chat
room finds it offensive(in which case it is easy to form private
rooms), and as long as it is not harmful(for example, harrassment
would never be tollerated...fortunately, this hasn't been an issue).
Basically, it is a place for PWN to meet other PWN, make friends, and
find and give support.
BTW, most of the people on the ICQ narcolepsy list are also on
the narcolepsy e-mail list that was previously mentioned. In other
words, our main mode of communication still remains through e-mail.
There are also occasional open chats in talkcity. Room is
#narcolepsy. You can access this server either through the web(only
if interactive java works on your machine), at www.talkcity.com, or
you can access via an IRC program by going to IRC network "EFNET", and
under server type "chat.talkcity.com" At this point in time, this is
a random chat. In other words, sometimes the room is there and
sometimes it isn't. You'll have to go online and see if narcolepsy
comes up in your room list. If it does, please feel free to stop by.
Mostly, this is a "doorway", and not a regular "hang out" However, if
it becomes a popular mode of communication, we may eventually set up a
private room. In the mean time, if you have more questions, that is
certainly a good place to start(or e-mail me...)
Lynn H(Petra) ly...@oberon.adsnet.net (this is a temporary
address...if a message bounces back, you can find me in one of the
chat rooms, or on the narcolepsy e-mail list)