Hi, my name is Pamela Schechter and I have undertaken the role as coordinator of local TM support groups on the national and international level. In that capacity, I have been asked to write a column for the newsletter which will assist members in starting support groups in their communities and will provide suggestions for ways to increase participation and offer support to people with TM.

I consider my role as coordinator of local TM support groups a natural progression of all the volunteer work that I have done for the past thirteen years in my local community. I have always believed that volunteering and volunteers play a vital and viable role in maintaining the quality and character of the areas in which we live. I have discovered that volunteering can act as an antidote to stress and depression. About thirteen years ago, imperceptibly and steadily, the desire to do community work for these reasons, became a reality for me. I joined a newly formed substance abuse community organization. I would see the advantage of devoting my spare time and energy to a group with a common purpose. I eventually became Outreach Manager for the agency. During this time, I attended Queens College in Flushing, NY where I received an undergraduate degree and later a Master's degree in Public Administration.

In 1996, my life changed irrevocably when I was diagnosed with TM, and in my case, caused by Lupus. Lupus is an auto-immune condition which can attack any organ, cell or system of the body. Because of motor and sensory loss, I could no longer walk in a normal fashion. I now had to rely on a cane to balance myself when walking or even standing. With prolonged and proper treatment, I have regained some balance and a more normal walking gait. Since then, I have joined The Transverse Myelitis Association and the Lupus Foundation of America [Long Island /Queens Chapter]. I have expanded my volunteer work to include both these organizations. At the time of my diagnosis, Lupus was a well-known disease, recognized by most people. But when I disclosed to those concerned about my condition, including family, friends, neighbors, etc., it was unanimous, not one of them had ever heard of TM. I encountered a wall of total ignorance about the disorder.

At first I was dismayed and a little hesitant about explaining TM, because I did not know too much about it. After several visits to my local library's computer site, I became familiar with most of the information and details about TM. This proved to be therapeutic for me because I could now adequately explain the syndrome to all and sundry. The knowledge eased my own fears and anxiety about my condition. It was also at this time that I recognized within myself some important needs and desires. As noted, I have a strong commitment to volunteer work. I had a desire to bring education and awareness about TM to the public's attention. I had an interest in meeting others who have been diagnosed with TM, and wanted to create the opportunity for people with TM to meet each other and to facilitate the exchange of information about symptoms and treatments, medical referrals, and coping mechanisms. I decided in several ways to achieve these goals.

I successfully lobbied my local assemblyman, Brian McLaughlin, who had the state legislature of New York declare June 6th 1999 the first Transverse Myelitis Awareness Day. To celebrate that occasion, I thought it would be a splendid idea for TM members in New York to hold a luncheon/support group meeting. I contacted my local diner, a place I go to bi-monthly for my lupus support group meetings, and reserved space in a private room. This undertaking was a very informal effort on my part as I sent out hand-written invitations and directions to the diner. The response to the invitations was most gratifying as 25 people came to the luncheon, far exceeding my initial expectations. The favorable comments from members about the luncheon spurred my determination to plan further meetings. I had the pleasure of writing about the first luncheon/support group meeting that appeared in the TMA newsletter. I have hopes that this article prompted interest by other members in other states to start their own groups if they have not already done so.

There is a vital need for TM support groups. After four successful meetings, I am convinced that members who attend experience a more hopeful and positive attitude about their illness. There is a mutual sharing of life with TM, fostered by a common purpose and group bonding that may not occur anywhere else. Briefly, support groups serve many important purposes. Through the support groups people can assist each other by offering information about doctors, medical facilities, and therapists in their vicinity who have some experience with TM. They can share and exchange information about services and entitlements that state or local government agencies may offer to those disabled by the disease. Support group participants can share information they have become aware of regarding current research and new treatments. Support groups provide a forum for members to share their own personal experiences with their condition and how they cope with TM; and to offer support and help to caregivers and family members who have questions and concerns about TM. In future articles in the newsletter, I will use this column to offer suggestions and strategies for these many important purposes of support groups.

I wish to help and encourage others to start their own support groups; to offer assistance in deciding what they hope to accomplish; how to run a support group, to offer information and literature about support groups and to act as a conduit for new ideas and suggestions from members. If you are interested in starting your own local and regional support group and need help in getting started, please call me at area code 1-718-762-8463 or write to: Pam Schechter, Coordinator, TM Support Groups, 41-10 Bowne Street , Apt.7m, Flushing, NY 11355. My e-mail address is PamIam6[AT SIGN]Juno.Com.