Transverse Myelitis Association
Srulyosef(AT)aol.com
Sun, 5 Jan 1997 08:56:50 -0500
The first issue of the Transverse Myelitis Association Newsletter will be
mailed this month. If you are interested in receiving a copy of the
newsletter and you are not currently on our mailing list, please send your
name, address and telephone number to: srulyosef(AT)aol.com. My name is Sandy
Siegel. I am working with Deanne Gilmur (Tacoma, WA) to get the TMA off the
ground and I am editing the newsletter. We are also beginning a research
project on transverse myelitis. There is a detailed questionnaire in the
newsletter that we are asking everyone to complete and return. It is our
hope that we can begin to systematically collect information about tm and
have this information either published or disseminated to doctors who treat
patients with tm. If you have concerns about providing your address and
phone number to me over the internet, please feel free to call me at (614)
766-1806. I would be glad to talk to you about the association. Please get
your address to me soon -- I hope to have the newsletter and survey mailled
in the next couple of weeks.
Pauline and I read the tmic messages regularly. One of the major issues for
us is the recovery after the second year. We have been really encouraged by
the experiences we have heard which reinforce that some recovery is a real
possibility. Pauline continues to experience considerable pain in her feet,
legs and butt. The medication helps some, but the pain really wears on her
-- she is a kindergarten teacher, and dealing with 50 kids does challenge
her. Our survey does deal with the pain issue -- we are really interested in
learning something about what other people are doing to deal with it. (By
the way, we will make the results of the questionnaire analysis available to
everyone -- perhaps in a report).
Jim -- I will be in touch soon so that we can start to deal with how we can
get the newsletter and survey up on the internet. Take care -- everyone.
sandy