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22.12.01

Just wanted to say Happy Christmas.
Someone sent me a link to a wonderful animated christmas card, and thought
you'd enjoy it too -
http://sitedezine.com/JLCards/xmas2001.htm
or
http://home.austarnet.com.au/eebee/jacquielawson/links.htm

The move to the new discussion forum seemed to go well.  Those of you who
haven't visited the forum in the past 2 or 3 weeks will see a change, but I
hope it's an improvement.  We made the decision to move due to Bravenet's
use of pop-up windows with every click of the mouse.  :-(
The new forum holds many more messages, and is able to store them for future
reference (it's searchable too).
I've created some sort of archive of old messages from the old Bravenet
forum (I was sent e-mail copies of all forum postings, and apart from losing
the first few months, I've still got 18 months worth of messages).  I may
add to it yet, but I've gone through all the old messages, and added only a
minority of messages - I've included those which I think are of most
interest to new readers, and not included many (of which some are repeats,
some are non-TS related etc etc).

I've updated the links to the forum from the site, but I won't be surprised
if I've missed any - please let me know if you find any!
The new forum is here
http://pub51.ezboard.com/btourettesyndromesupportuk36971
The chat room and guestbook will stay at Bravenet.

Many many thanks to everyone for all their help and support, especially to
those regulars in chat and the forum

Hope you all have a Happy Christmas and New Year
tosy

 

25.10.01

This is just to let you know that Bravenet services will be down over this weekend.  That means no chat or discussion forum for a day or two - starting from Friday evening sometime.  (I'm not sure whether we'll be able to access the Chat room at our usual time on Friday evening or not - we'll have to wait and see)
Don't forget the TSA AGM is in London on Monday - more info on their website
http://www.tsa.org.uk/
Talking of which - their new website will be launched next week too.
The Scottish TS Support Group have their AGM in Perth on Saturday (27th) - contact details here
http://www.tourettesyndrome.co.uk/scotland
If you've been following the Discussion Forum recently, you'll know that the BBC are making a new documentary about Tourette Syndrome.  They are currently hoping to hear from anyone interested in talking to them (on or off film).  You can  e-mail    sarah.bampton@bbc.co.uk     or
philippa.bradley@bbc.co.uk     or call 0208 752 6809.

 

24.3.01

Tuesday morning chat will continue for another 2 weeks to see if anyone
calls in.  Sue has been there for several weeks now, with only one person
calling in for chat during that time.  She is getting her ironing done
though  :-)
If you want the Tuesday chat to continue - please look in over the next
couple of weeks - between 10 & 11am.    If there's interest, Sue will carry
on.

Just a reminder about the Ally McBeal series currently running on the new E4
satellite channel.  Unfortunately, I missed the first episode last Monday,
but it will be repeated on Sunday (25th) night at 9pm.  The next episode
will be on Monday at 9pm.  I believe the storyline concerning Tourette
Syndrome lasts for 3 episodes.
See the discussion forum to read what folks (who did see it) thought of it.
ALL the feedback has been very positive.  The consensus is that TS is
portrayed accurately and sensitively, which is great news after all the
sensationalised coverage recently.
This link describes the first episode "Reasons to Believe"
http://www.coffeerooms.com/ally/summaries_season4/010108/summary.html
The following link is an article about Tourette Syndrome, featuring David
Kelley (series producer), Anne Heche (the actress who plays the woman with
TS) and Donald Cohen (TS expert).
It's a great article (I think so anyway!)
http://www.usatoday.com/news/health/spotlight/2001-02-15-kelley-tourette.htm

Happy Mother's Day!
http://uk.greetings.yahoo.com/greet/view?527D774R8WSDB

 

 

17.2.01

Hi again,
Apologies for writing again so soon, but wanted to let everyone know about the upcoming TS documentary....
This is the BBC Knowledge website link for the Tourette Syndrome documentary.
http://www.bbc.co.uk/cgi-bin/whatson/prog_parse.cgi?FILENAME=20010221/20010221_2100_bkuk_3897674_50

It will be shown at 9pm on Wednesday 21 February on BBC Knowledge channel (satellite) as part of the 'Medical Mysteries' series.  If you don't receive the channel - then ask a friend to video it!  

Sue is now hosting the Chat Room every Tuesday morning from 10-11am.   If you're able to be there - take a look in sometime.

Peter in Portsmouth is hoping to set up a support group in the area.  If you live nearby, or know someone there who might be interested - let me know and I'll forward your messages on to Peter.  He'd also like to hear from anyone
who may have any advice about starting a group.

Sarah has sent in an article that she wrote for school.  "The Beast Within" - you`ll find it on this page
http://www.tourettesyndrome.co.uk/beast.htm
Best wishes
tosy

 

5.2.01

Hi  folks,
I guess I'm a little bit late to wish everyone a happy new year eh?  Well, if I haven't already done so, happy new year anyway.

The TS documentary which was due to be shown on Wednesday this week, has been rescheduled - but we don't know when for.  As soon as we know, I'll try to let everyone know.   If anyone else has information about this, perhaps
they could either let me know, or put a message in the forum.

I've had a suggestion about Chat one morning a week, on a Monday or Tuesday. If anyone would like this facility, could they again let me know.  We already have a volunteer host.  If I get no reponse by e-mail or in the
forum, then I'll assume we put it on the back burner for now.  The voice chat worked really well - for one evening!  After that very first day of use, the company removed the programme!  I've been trying to sort out another, but the new company - Telcopoint - have had problems due to the huge numbers of people trying to replace their voice chat facility.  I'm hoping it'll soon be up and running again.  I'm not sure if I want to use voice chat each time - although it's possible to be able to use voice and text messages in the same room.  Perhaps we should have voice chat on one weekly session, and use the regular chat room the rest of the time.  Don't forget the chat room is always there - you can arrange to 'meet' people there at any time.

You've probably seen the messages in the forum this past week about TS abuse on other websites.  Malcolm did a great job of both alerting us and alt.support.tourette, and writing to the author of the "Tourette Syndrome
Screensaver Challenge".  This chap had a few e-mails sent his way, and to his credit, he removed the item, and in it's place, published a full apology and reprinted Malcolm's letter.  Excellent.  (well done Malcolm and others
who wrote).   See the discussion forum about another obnoxious site (don't visit the page linked from the forum if you have children around, or are new to TS)

I've had many e-mails in the past, asking how to explain Tourette Syndrome to a younger child.  If anyone has any suggestions on how to explain, particularly the phsyiological aspect - what makes them tic etc.  - please
let me know, as I'll try to make a web page about it.

Leslie Packer PhD has recently totally upgraded and added to her site at www.tourettesyndrome.net
I recommend you visit there - particularly for the conditions commonly associated with TS.

This has been sitting on my computer long enough, so - bye for now
tosy
Tourette Syndrome Support in the UK
www.tourettesyndrome.co.uk

(as a postscript 6.2.01 the TS documentary will now be shown on 21 February on BBC Knowledge satellite channel)

 

3.12.00

Hi folks,
The TSA AGM appeared to go well, in spite of the weather - and it looks like
it was great fun too, judging by the photos at the TSA web site  -
www.tsa.org.uk

I've added a few pages to the site in the past month or so - see the
Contents page for the full listing, we even have a French version now!
(although I can't claim the credit for the translation!)
http://www.tourettesyndrome.co.uk/contents.htm


A few weeks ago, I wrote a letter to all the schools in my area - just
letting them know about Tourette Syndrome.  I've put the letter on the site,
just in case anyone else wants to do a similar thing.  I also wrote to all
the doctor's surgeries a few months ago.
Linked from the Education page
http://www.tourettesyndrome.co.uk/education.htm

Internet Security is a pet subject of mine - make sure you have up-to-date
anti-virus programmes running.   I recently received another worm virus via
e-mail, but my anti-virus programme dealt with it.
More info here
http://www.tourettesyndrome.co.uk/security.htm
Chris Mansley recently sent me a copy of an e-mail he'd received about the
dangers to children online - read it here  (thanks Chris)
http://www.tourettesyndrome.co.uk/stalk.htm

A Lincolnshire newspaper recently featured TS
http://www.tourettesyndrome.co.uk/stories4.htm
The flurry of publicity in the Sunday papers this month has resulted in some
interest - see the articles at the TSA website

I've had a few people asking me about how they go about making a website
etc, so to save repeating myself..
http://www.tourettesyndrome.co.uk/website.htm

Lastly, Christmas is fast looming up, so for those who want to share a
little Christmas cheer - here's some seasonal animated gifs
http://www.tourettesyndrome.co.uk/xmas

Not all of the pages are listed on our home page, but they are on the Contents Page.   Sorry I haven't been updating the News page, but we've been tending to use the Discussion Forum for that. 

If anyone has any suggestions for the site, news, stories, poems, etc -
please send them in!

I've really got to get down to preparing for Christmas now - still masses of presents to buy, all my cards to write etc.  The children have got umpteen carol concerts etc coming up in the next couple of weeks too, so I think the site will be taking a back seat for a while.  I assume everyone else is equally busy though.  So chill out folks - don't let it all get to you too much, and make sure you get some much needed time for yourselves!

Take care
tosy
Tourette Syndrome Support in the UK
www.tourettesyndrome.co.uk