TMA Internet Activity

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:

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 SIGN]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 SIGN]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 SIGN]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 SIGN]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.

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!