Sunrise-Tourette FAQ
revised 1/1/98
Maintained by Sheryl Lilly, mailto:Lilly6@pacbell.net, Niki,
mailto:nhardin@dc.jones.com, and Jackie Aron for Sunrise Support, Inc.
This FAQ may be freely distributed, provided it is not modified in any
way. Copyright 1999 Sheryl Lilly and Jacqueline Aron.
All posts on the Sunrise-Tourette mailing
list are copyright by their authors, and may not be reproduced in any
manner without express permission of the authors.
WHAT IS Sunrise-Tourette?
Sunrise-Tourette is a private, closed, moderated mailing list
consisting of well over 150 participants which provides support and
personal experience-sharing to people who have Tourettes Syndrome
and other, associated syndromes, including Obsessive/Compulsive
behaviors, Attention Deficit/Attention Deficity Hyperactivity, autism,
or PDD.
Any and all topics related to TS, living with TS, medications,
education, jobs, dating, personal experiences, medical research,
associated neurological and other problems (particularly OCD and
ADHD,) and diagnosing TS are welcome here. Humor is especially
appreciated.
The list was originated as a component of P.O.V. Interactive, a "model
project designed to explore the potential use of on-line technologies
to transform television into a catalyst for lively and thoughtful
interchange." P.O.V. is a U. S. Public Television non-fiction film
series, which produced an excellent program about life with Tourette
Syndrome produced by Laurel Chiten around the story of photojournalist
Lowell Handler, both of whom have TS.
Nonbroadcast cassettes of the program are distributed by New Day Films
(22-D Hollywood Avenue, Hohokus, NJ 07423, phone 800-343-5540 fax
201-652-1973).
The beginning purpose of the list was a dialogue baised on the TV
program "Twitch and Shout" - it has since grown into a communtiy
of people who face the daily challenges of living with tourette
syndrome.
The list is moderated and owned by Sunrise Support, Inc, and
administered by Jacqueline Aron, RN
(mailto:sunrisesupport@pipeline.com).
HOW TO UNSUBSCRIBE:
To unsubscribe to Sunrise-tourette you must send an email to this
address:
mailto:majordomo@igc.org
In the body of the letter you type only this:
unsubscribe sunrise-tourette
If you try to unsubscribe from this mailing list, and your request is
rejected, then send mail again to "majordomo@igc.org" with the
following command in the body of your email message:
unsubscribe sunrise-tourette Name
Messages to majordomo must come from the same email address as you
recieve the mailings at or they will be rejected by majordomo.
TO POST A MESSAGE TO THE LIST:
To send your posts to the mailing list, address your message to
sunrise-tourette@igc.apc.org
or use the 'reply' function of your email application to reply to a
post. You must use the same return address when you're posting
messages to the list as you did when you subscribed, otherwise
messages will not be recognized.
THE LIST IS AVAILABLE IN DIGEST FORM TOO. TO SUBSCRIBE TO THE DIGEST:
write majordomo@igc.org
in the body of the email, write
subscribe sunrise-tourette-digest
YOU MUST unsubscribe the regular list if you wish to recieve the
digest. It is suggested that you do unsubscribe the list before your
subscription to the digest begins, or you may miss some mail.
Special permission may be granted on an individual basis to recieve
both the digest and the list. (usually at different addresses) Please
write the moderator to obtain this permission.
WELCOME FROM THE MODERATOR (by Jackie Aron)
I would like to welcome all the new members.
It is always wonderful
to see new names and new faces here. I daily give thanks also for the
"old guard" who have been here forever, and are so helpful in terms of
answering questions and telling people their own experiences and how
they personally have dealt with the issues you new members are now
facing. There is really a wealth of knowlege here for all you to
absorb. You will also find a lot of support here.
Here we speak the
unspeakable, and having taken the risk of doing so, find so often
several others chiming in saying "me too." There really is nothing
you can bring up here that someone here has not experienced before you,
either as a parent or themselves. Feel free to tell us how you really
feel. Most of us have felt that way too. Many new members express an
extreme feeling of relief on joining us, and a sense of finally being
in a place where they are understood at a deep level, a feeling of
"coming home." I hope all of you will come to feel that way too.
By way of brief introduction, my name is Jackie, and I moderate and own
this list. I am an adult with TS/OCD/ADD etc, and I am the mother of a
23 year old son. I am also a
registered nurse, and quite current on psychotropic medications. I
have graduate education in philosphy and bioethics. I taught psych
nursing for many years, and I also have a lot of experience working
with both adolesents and drug abusers in hospital settings.
I am currently licensed to practice in NY, NJ, and VA.
LIST RULES AND ETIQUETTE:
The TS list is first and foremost a support group. Our desire is to
provide advice, humor, successful role models, and factual information
about TS and its associated neurological syndromes. For this reason,
we ask the following:
*Maintain the privacy of all list members.*
In order to continue the open and free exchange that makes the TS list
a safe space for TSers to discuss delicate and sometimes embarassing
situations, as well as to vent their feelings when needed, we must
continue to maintain the privacy of our members.
Please do not share personal information about individuals posting on
the list without their express permission (that means ask someone
before you go talking about them or showing their posts to anyone, and
be sure you get a reply from the original author.) Reposting list
material or printing list mail and distributing it to non-members is
grounds for being removed from the list, as is revealing personal
info with regard to who is on the list, why they are here, or most
important, that they may have a particular diagnosis. These are strong
rules we have in place to protect the privacy of the members so they
feel free to speak here and know they are safe.
*Do not post private email to the list without clearing it from the
authors first.*
This is standard internet etiquette, and particularly important here.
*Be nice.*
Disagreement is fine. Personal attacks or judgemental statements are
not. Please frame any controversial discussions in terms which stick
to the facts, not the personal. We do not want to become a forum for
flame wars. Attack the idea if you wish, but never the person.
*Avoid politics and religion if possible*
TS list members come from all parts of the world, religions, political
persuasions, and walks of life. Please respect the differences between
us. If you wish to discuss politics and religion with other list
members, kindly take it to private email. Thanks.
TIPS FOR KEEPING THE MAIL VOLUME DOWN
The TS list has lots of posts, so we ask the following:
Please quote only the relevant parts of a post in your reply. Posts
which contain 80 lines of quoted text, followed by a two line reply,
are strongly discouraged.
If the topic wanders off onto a new course (which happens often)
please change the thread subject as follows:
TS Humor (was TS kids camp)
If possible, specify individuals to whom you are replying (ex: TS
Humor-for Jackie), and if you are replying to several notes, try to
consolidate them into one larger reply instead of several individual
replies.
RESOURCES FOR PEOPLE WITH TOURETTES SYNDROME:
(We do not endorse any of these sites or lists, this is provided
only for your convience in searching for information.)
National Tourette Syndrome Association, Inc.
http://tsa.mgh.harvard.edu/tsamain.nclk
Mailto:tourette@ix.netcom.com
Both National and many local TSA groups provide support, research
funding, and information for people with TS, including excellent
information for parents of TSers, information for schools with
educational strategies for TS kids, and material geared towards
TS kids, their friends and schoolmates. TSA also provides listings
of physicians in the United States who treat TS.
A good place to start is the Dallas/Ft. Worth TSA web site, by our own
Vicki Hill and Eric Goldsmith, at:
http://www.geocities.com/CapeCanaveral/7581/ts.htm
The site includes links to virtually every TS site out there, along
with info on books, videos, etc. (And we both hope to add to it over
time. -- Vicki H.)
For information on IEP and special education you can get easy answers
at this site, developed and maintained by Sheryl Lilly,
Sunrise-Tourette's in-house advocate:
http://members.tripod.com/~lilly6/index.html
ONLINE TOURETTE SYNDROME RESOURCES: (Compiled by Kathy Shorr)
Multimedia Medical Reference Library
http://www.med-library.com/
Pediatric Psychopharmacology Tourette's Syndrome
http://vh.radiology.uiowa.edu/Providers/Lectures/Conferences/CPS/39Tourette.html
A Consumer's Guide to Tourette Syndrome Medications. by: Gerald
Erenberg, MD.
http://tsa.mgh.harvard.edu/allourstuff/aconsumersguide.html
Guide to the Diagnosis and Treatment of Tourette Syndrome, published by
the Tourette Syndrome Association, by Ruth Dowling Bruun, M.D.
http://www.mentalhealth.com/book/p40-gtor.html
*************BOOKS**************
An Educator's Guide to Tourette Syndrome by Suzanne Bronheim, Ph.D.
http://tsa.mgh.harvard.edu/allourstuff/aneducatorsguide.html
Coping with Tourette Syndrome in the Classroom by Judy Werthiem, MS,
Spec. Ed.
http://tsa.mgh.harvard.edu/allourstuff/copingwithTSinclass.html
The Unwelcome Companion, An Insider's View of Tourette Syndrome (newly
revised) http://www.redhouse.com/books/fowler/
******************************************************
Tourette Syndrome: Sponsored by The University of Iowa Division of
Psychiatry and The Tourette Syndrome Association, Inc.
http://vh.radiology.uiowa.edu/Patients/IowaHealthBook/Tourette/HomePage.html
A Neurologist's Notebook; A Surgeon's Life by Oliver Sacks, M.D.
http://tsa.mgh.harvard.edu/AboutTS/notebook.html
Problem Behaviors and Tourette Syndrome
http://tsa.mgh.harvard.edu/allourstuff/problembehaviors.html#bruunricklerkelman
National Tourette Syndrome Association, Inc.
http://tsa.mgh.harvard.edu/tsamain.nclk
BOLD: Bridging & Overcoming Learning Differences
http://members.aol.com/GandAPress/bold.html
Gateway to Neurology....Massachusetts General Hospital
http://neuro-www.mgh.harvard.edu/
A "virtual neighborhood" consolidating in ONE PLACE information and
resources relating to Attention Deficit Disorder (A.D.D.), AD/HD
and Learning Disorders (LD) http://www.greatconnect.com/oneaddplace/
*ADDULT@JUVM.STJOHNS.EDU
A forum for discussing the more personal aspects of living as or with
an addult with Attention Deficit Disorder and for professionals who
work with ADDults. The list owners are Jim McLean-Lipinsk
(jmclip@world.std.com) and Dan Diaz (mailto:dandiaz@rdz.stjohns.edu)
To subscribe:
1. Send e-mail message to address: listserv@sjuvm.stjohns.edu
2. Leave subject blank
3. In the body of your e-mail note write the following (starting
in column 1)
subscribe ADDult firstname lastname
Your Personal Net (all kinds of stuff -- including Guide to Health and
Medical Advice)
http://www.ypn.com
Tourette's in California
http://geocities.com/Hollywood/2219
TS Home Page
http://www.geocities.com/Athens/Forum/6903/tourette.html
Hyperactivity
http://text.nlm.nih.gov/nih/cdc/www/32.html
Mental Health Net. In the text printout, they say, "We link to over
3,650 other mental health, psychology and psychiatry sites on the web,
all available relevant newsgroups and mailing lists! All for free!
Come with us and explore mental health on line..."
http://www.cmhc.com/
Autism Resources. Index of online information and resources on the
developmental disabilities Autism and Asperger's Syndrome.
http://web.syr.edu/~jmwobus/autism/
DSM IV Diagnostic Criteria for Asperger's Syndrome
http://www.students.uiuc.edu/~bordner/ani/dsm4-aspergers.html
Asperger's Syndrome Information Package Autism Society of America Web
Site http://www.autism-society.org/packages/aspergers.html
National Alliance for the Mentally Ill(NAMI)
http://www.nami.org/toc.htm
Welcome to Sunrise-Tourette!
Jackie Aron and Sheryl Lilly,
for Sunrise Support, INC
