1: Tue Apr 01, 2008 12:10am distaff1776I've never attempted anything like this before and was wondering if anyone had good suggestions/ideas for how to go about organizing a local support group? I was diagnosed at the end of 2000 with a cavernous angioma on the brainstem in the pons, with symptoms. This website has helped so much in giving me that support of knowing that there are others out there who can understand what I am going through and are always there. I am a teacher who through the years has been a speaker/presenter/trainer numerous times for various school system's teacher inservice programs, in state and out of state. When my symptoms started occurring, prior to my being diagnosed, I stopped everything. I stopped doing teacher inservice programs, singing and speaking publicly. With the uncertainty and fear of what was happening to me, I basically confined myself to my classroom teaching and that was it. After being diagnosed, I went from being a very active, highly energetic, very independent athletic outdoors person to an extremely withdrawn depressed individual who when I had to be out in public I just tried to blend in with the scenery, as my symptoms gradually got worse. After two years, even though my self-confidence was at a very low ebb, I made up my mind that it was now or never, and I needed to desperately try and regain as much of my previous life as I could possibly retrieve. I have worked really hard at doing just that, falling short many times, yet trying harder than ever not to give up. I had always thought that when I retired, I would try to go public with my health issues in an attempt to locally create public awareness and hopefully be a speaker/presenter to garner support for research, which brings me to this point. Up until now, I have only encountered one person from my region who shares my same diagnosis. I now feel that the time is right to organize a local support group, and I am ready to do just that, but I could use some help. If anyone has had successes with their attempts to do this, I am certainly open to suggestion. Also, if there are those who are local, from the East TN region (or surrounding regions) who would be interested in such a support group, I would like to hear from you.
2: Fri Jun 27, 2008 1:18pm Apr14Hi there,
3: Mon Sep 08, 2008 10:38pm brainstemwifeWe live in southwest VA near Kingsport TN. We would be interested in a support group in this area.
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