Transverse Myelitis Association
Volume 1 Issue 2
October 1997
Page 5
TMA Internet Activity
Jim Lubin and Sandy Siegel
Since the production of the last newsletter, Jim Lubin was formally
assigned the position of Director, Internet and Web Site for the TMA and
will serve on the TMA Board of Directors. Jim has been a tremendous source
of support for people with TM. The TMA recognizes his many skills and his
energy and efforts in creating a forum for so many people with TM to find
each other and to exchange information and encouragement. We congratulate
Jim on his new positions and look forward to the many contributions Jim
will be making to the TMA and its members.
The Transverse Myelitis Internet Club (tmic) was established in August,
1996. The purpose of the tmic is to provide a forum for people to
communicate with others about transverse myelitis. In order to participate
in the tmic, you need access to the Internet. When a person "posts" a
message to the forum, all of the participants in the tmic automatically
receive that e-mail message. An Internet list group, such as the tmic, is
a very effective way to communicate with a large number of people about a
particular topic. For instance, I may be experiencing sensations in my
feet that I have not before experienced and I am not certain what they
mean. I could post a message on the tmic that described my circumstances
and the new sensations, and would ask if anyone else had experienced
anything like that themselves. Everyone in the group would receive that
message, and more often than not, I would receive more than one response
from people who have experienced similar sensations and they might also
discuss what their doctors told them was the cause and consequence of those
sensations.
At present, the membership of the tmic is approximately 140 people. It is
likely that there is no larger group of people with TM who are in regular
contact with each other. The membership of the tmic, as the membership of
TMA, is international in scope. The tmic has become a wonderful way to
exchange information, receive support and find answers to questions.
Recently, there was a posting from a parent with a child who had been
diagnosed with TM. The parent was seeking ideas and approaches regarding
how their child was going to be integrated into the school environment in a
positive and healthy way. The responses to this person have been both very
informative and heartwarming. There has also been a request for other
children who might be interested in talking to and corresponding with this
child. Again, there have been positive responses to this request. This is
but one of the many many issues that are regularly communicated about on
the tmic.
An archives has been established for the messages that have been posted
from the beginnings of the forum. The archives may be searched by the
author, the date of the posting, or by the string of ideas or content of
the postings. There is also a search engine that has been established for
the tmic. This is one of the most important and valuable features of the
tmic. You can search all of the archives by typing in a word or a string
of words. The search engine will locate all of the messages that include
the words you have entered. The instructions that appear on the site to
perform this type of search are as follows:
Search List Archive: You can use the booleans and, or, or not in
searching. Without these booleans, we'll assume you're anding the words
together. Evaluation takes place from left to right only, although you can
use parentheses to force the order of evaluation. You can also use
wildcards (asterisks) to search for matches to the beginnings of words only.
For those of you who have not spent time searching for information on the
Internet, these instructions may sound as daunting as the instructions for
programming your VCR. In both cases, we recommend that you get your
children to do it -- they likely know what it all means. Actually, it is
not difficult and you will quickly discover how a search operates. Perhaps
an example will demonstrate the power and value of this search engine.
Let’s say that my neurologist has just prescribed baclofen as a medication
for me. I would like to know how it has worked for other people with TM
and if they have experienced any side-effects from the medication. I
search the archives by entering the word "baclofen" in the space and either
press return or use my mouse to hit the search button. The search engine
will list each of the messages that have been posted that include the word
baclofen. I can read each of these messages to find if the information I
want is included. I may read a message from a person who’s experiences
sound very much like mine. I can use their e-mail address to contact that
person directly and begin a dialogue with that person through e-mail to
explore their experiences with baclofen, and, likely, many other
experiences with TM.
In order to perform a search of the archives, you may follow the links to
the archives from the tmic site. You may also go directly to the archives
search by using the following address:
http://www.eskimo.com/~jlubin/search.html.
If you would like to subscribe to the tmic, you can get to the site using
the following address: http://www.eskimo.com/~jlubin/disabled/tmic.
You may subscribe to the forum in one of two ways. There is an electronic
TMIC-List subscription form at the site. To subscribe to the tmic mailing
list, you just enter your real name and full internet e-mail address in
the boxes provided and click the subscribe button. You should receive a
message confirming you have been added to the list. If you do not receive
a confirmation, you will have to repeat this process. You will receive
every message that is sent to the tmic. The second method for subscribing
to the tmic is to send a message to tmic-list-request(AT)eskimo.com with the
subject "subscribe" (without quotes). You will receive a message
confirming you have been added to the list. At various times, the number
of messages at the tmic becomes fairly large, and there are some people who
would rather not receive all of those messages at the same time. It is
possible to subscribe to a list digest of the tmic. To do so, send a
message to
tmic-digest-request(AT)eskimo.com with the subject "subscribe" (without
quotes). You will receive a message confirming you have been added to the
digest. Those subscribing to the digest receive one message sent every
two days; the digest is one message containing all the messages from the
past two days, or as soon as it reaches 40K.
Regardless of whether you are a regular subscriber or a digest subscriber,
you post messages to the list or forum by sending mail to
tmic-list(AT)eskimo.com. Everyone subscribed to the list, or digest, will
receive your message and will be able to respond. Once you subscribe to
the list, it is a good idea to send a message to the group introducing
yourself and letting everyone know you are new to the forum. Many new
members introduce themselves and offer a brief description of their history
with TM.
As with most Internet activities, the rules governing conduct are
ambiguous. There are a few rules of the tmic that are designed to create a
positive environment for those participating in the tmic forum. When
responding to a particular message, it is a good idea to quote only the
parts of the message that are relevant to your response. Often times
people will include an entire previous posting in their response. Everyone
then has to scroll through what, in some cases, is a very long message of
which only one or two lines are really necessary. It is good nettiquette
not to use bold type. On the Internet, it is read as someone "SCREAMING."
If you send an attachment to everyone, use your virus scan software to
check the file before you send it. Please keep the messages to the tmic
focused on the subject of transverse myelitis. There are rare occasions
when the discussions have wandered beyond TM, and this is inevitable. But
we hope to maintain the focus of the forum on TM. It is an interesting
phenomenon that as a group of people we represent the diversity that exists
in American society -- and since we have an international membership -- the
diversity around the world. What we all have in common is that we have
been diagnosed with TM or have a family member or close friend with TM.
Some of us are anthropologists -- the science of finding all people
entertaining as opposed to annoying. Not everyone shares that world view.
The forum is open for discussions of TM -- all aspects of TM from the
physical, the emotional and psychological, the social to the spiritual.
Diversity can be a strength for all of us who have to deal with these
issues. The most important rule -- be nice to each other.
In the event that you should ever wish to end your subscription to the
tmic, send a message to tmic-list-request(AT)eskimo.com with the subject
"unsubscribe" (without quotes) and you will be removed from the list.
You do not need to own a computer and modem or have an Internet service
provider or on-line service to benefit from the tmic. Most public
libraries around the country provide Internet access to their patrons. In
many cases, the libraries offer courses that will provide you with basic
skills for using the Internet. There are also libraries that will allow
you to set up an account to receive e-mail at the library. If this is the
case, you can subscribe to the tmic by using this account. Ask your
library what services they offer, and if you need assistance, show them
this article and ask them for help getting to the tmic site. If your
public library does not yet have Internet access, there may also be a
college or university in your area that might allow you Internet access
through their computers.
TMA on the Internet http://members.aol.com/tmassocwa
A TMA web site was established in 1997. Our web site provides some basic
information describing the mission of the TMA. You may also read the TMA
newsletter and download a copy of the questionnaire from this site. The
potential for using our web site as a means of quickly disseminating
information is tremendous. At present, the web site has become one of the
most effective methods we have for reaching out to people with tm. Our
site has been registered with Yahoo.com; if you perform a yahoo search
using "transverse myelitis", the TMA web site will appear close to the top
of the list. The tmic is also near the top of the list of sites. Thus far
we have received over 2000 hits (visitors) at our site. Many of these
visitors have identified themselves as people with TM and have asked to
become members of the Association.
As is evident from the article discussing some of the survey material, most
of our members have recently been diagnosed with TM. It is our fervent
goal to find more people with TM, both who have been recently diagnosed and
also those who have had the diagnosis for a longer period of time. The
Internet has become an invaluable asset in providing a mechanism for
providing and exchanging information. It has also become one of our most
effective methods for finding people with TM -- or assisting them with
finding us!
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Transverse Myelitis Association
Phone: +1 (253) 565-8156
Email: srulyosef(AT)AOL.com
Web: http://members.aol.com/tmassocwa/