A Word about Support Groups
Stephen Miller
Vice President, TMA

One of the many functions the TMA works to achieve is facilitating support amongst families and to disseminate information beneficial to those touched by the neuroimmunologic disorders, including those in the medical community who are, or will be, treating someone diagnosed with TM, NMO, ADEM, or ON.

Several platforms have been used to support and accomplish this goal.  Some have been more successful than others and still others have spawned new ideas to try.  One of the most successful tools used to help our community has been through the development of local support groups.  I have seen folks with TM meet others with TM for the very first time, sometimes years after they were diagnosed, and have witnessed first hand the tremendous impact it can have.  I am one of them.  I contracted TM in November, 1983 at the age of 13.  It wasn’t until March, 2002 that I came across someone else with TM and it was amazing.  This person was just like me.  She walked like I did.  She stood just like I did.  Above all, she knew TM like I did.  We talked for six hours about everything from movie stars to the perils of a rubber cane tip on a wet floor.

What impacted me the most is that she just “knew.”  For the first time in 19 years I was sitting face-to-face with a person that did not need an explanation.  I did not have to help her understand; she understood and she understood all of it.  She knew spasticity, those strange feelings of hot or cold, and fatigue.  She also knew the other things that nobody else does.  The simple things like knees weakening when the elevator starts to go up, and the complicated things like the unique relationship that develops between a patient and physical therapist. I do not know words adequate enough to articulate what happened that afternoon when we met, but it was profound.

This experience is repeated regularly for people within the setting of support group meetings.  Currently we have support groups in 13 countries and 17 states across the USA.  Some are more active than others; some have over 50 people attending an event, some only a few.  But whether they meet in Scotland, Germany, South Africa, New Zealand, or Idaho, the impact is no less profound.

In the following pages you will read reports and articles from some of our support group leaders.  Some are announcing new groups just getting started and others are from groups that have been around a while.   They are all written by people who are realizing the many benefits derived from participating in their local support group. 

If you have not attended a support group event, I encourage you to try it.  If there is not a support group in your area and you would like to organize or participate in one, please let me know.  I can put you in touch with other support group leaders and will help you contact TMA members in your area.  Please consider starting a support group; it is not difficult to do, and those people who lead these groups derive the most benefit from the experience.