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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