Been lurking for months with special interest in anything related to
Shy-Drager Syndrome. I go away on vacation and I come back to find
discussion underway on Shy-Dragers. My interest stems from
coordinating the Rare Disorder Network and being a part of the
Autonomic Dysfunction Center at the General Clinical Research Center
at Vanderbilt University. Generally I am in agreement with Mike's
description of Shy-Drager; but it has been my experience that person's
effected with Shy-Drager Syndrome (SDS) remain very articulate. The
speech of a person with Shy-Drager is eventually effected but
mentally, the person's I've met, have been fine. Those who either
have SDS or have family members with SDS may want to explore support
options such as the Shy-Drager Support Group. This is a national
support group founded by Ms. Dorothy Trainor-Kingsbury who lives in
Albuquerque, New Mexico. Her husband suffered from the disease. The
support group has a annual meeting with guest speakers and this year
some local meetings are planned as well. Then there is the SDS
Advocate, a newsletter for all persons interested in Shy-Drager
syndrome and related disorders. Its purpose is to provide news,
information, support and encouragement for people living with SDS.
The newsletter was started by family members of persons with SDS.
>Dorothy Trainor-Kingsbury
>Shy-Drager Syndrome Support Group
>1607 Silver Avenue S.E.
>Albuquerque, New Mexico 87106
>1-800-SDS-4999 or 505-243-5118
>SDS Advocate
>P.O. Box 211
>Hartford, WI 53027
>Editors: Tara M. Fettig and Nancy Mansavage
I hope this information will be helpful.
Sylvia
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Sylvia Dickinson, R.N., M.S.N.
Coordinator, Rare Disorder Network
GCRC, AA-3223 Medical Center North
Vanderbilt University Medical Center
Nashville, Tennessee 37232-2195
e-mail: [log in to unmask]
Phone: 1-800-428-6626 Fax 615-343-8649
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