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tosy.co.uk - Tourette Syndrome Support in the UK

 

   

Check out the Discussion Forum for latest news etc!

Please let me have news of what’s going on nationally, or in your area.  Send me your stories, poems etc - please make it clear whether you'd like them published on the Life & Strife page or not, and if so, whether you'd like to remain anonymous

Feedback Form

Forthcoming Events (TSA Website)

Yahoo! Tourette Syndrome News Stories

19 September 2002

My work and family commitments have increased, and I therefore have far less time to devote to this site.  I have decided I can no longer host the Friday night chats, but I'm hoping someone may want to take over (perhaps a different day or time).  Helen continues to host Tuesday chats at 8.30pm  :-)

I haven't been able to update this site for some time, but I am still putting news, and any new links or information in the forum - so please check there!

 

 

29 March 2002

The Trisha Show

The family that recently appeared in the Daily Mirror will be featured in an upcoming Trisha Show.  It was due to be screened on 27 March, but has been rescheduled - we'll let everyone know the new date in the Forum.    The programme is rescheduled for Thursday 11 April 9.25am

 

15 March 2002

Site Problems

Recently, the website has been having various problems.  For 10 days or so, Bravenet was offline, which meant we lost the Chat Room, Guestbook and counters.  During that time, we used a new Back Up Chat Room - the ParaChat link on this page.

Although the Bravenet services are more or less back to normal, we did lose some messages from the Guestbook, and several thousand visits off the counter - we even lost the statistics for the 28 February, which was our busiest ever (as a result of the BBC documentary and other recent publicity)    :-(     

Valiant, who host this site, have also had problems, resulting in the website being offline for several hours at a time.  I have therefore copied the site to an additional server, so that if www.tourettesyndrome.co.uk is ever offline, then you can access the mirror site by using www.tosy.co.uk  (I'm hoping it's unlikely that they'll ever both be down at the same time!).   I've set www.tosy2.co.uk to point at the Discussion Forum.

I apologise for the recent disruption, but hoping we've got back up systems in place now.

The Discussion Forum is the place to keep up to date with news on a daily basis - and you can read about the recent publicity there

 

5 March 2002

Great Wall of China - Fundraising trip for Tourette Syndrome research

 

23.2.02

UK Tourette Syndrome Kids

Annie and EJ have set up this new Community created especially for young people with TS.

 

BBC Documentary "The Boy Can't Help It"

Wednesday 27 February 2002  BBC1  9pm

 

22.12.01

Newsletter

 

4.12.01

New Discussion Forum

Bravenet have until now provided us with a good service - although I have longed for the  promised upgrade, where we would be able to archive all our posts.  It never happened :(

This week, following a month or so of intermittent down time, we've been getting pop-up windows with every click of the mouse on the forum.  Very irritating!

So, I think the time has come to move on.  EZBoard have a customisable forum that remains simple, requiring no registration, logging in or passwords (although you have that option too), can still remain anonymous (which I think is important).  The forum automatically archives all messages, and they are fully searchable.

The forum goes live now!

I have trawled through all our old forum messages (Bravenet automatically send me copies of all messages via e-mail) and have created a make-shift archive of previous posts.  I have only included those subjects likely to be of most interest.  There are invariably many that I have missed.  So far, I've only gone back to March of this year, so I still have some work to do!  I'll get there slowly.

I am updating all the links to the discussion forum on the site, but there are many, and I may miss some - please let me know if I do.  I will not update the links to the forum on this page, which appear as part of a news item prior to today's date.

Hope you like the new forum!

 

25.10.01

Newsletter

 

16.10.01

BBC Documentary

The BBC is currently researching for a new documentary about TS. It's hoped this will be informative and sensitive - it appears that way at the moment. John from "John's Not Mad" will also be involved.
They are hoping to start filming this month, and are currently travelling around the country talking to individuals and families.
It's hoped the programmed will be screened on BBC2 at 9pm one Spring evening (February at the earliest)

They asked me to put this on the site:

The BBC is making a one hour documentary about
living with Tourette Syndrome to go out on BBC1.  We would like to talk to
people with TS and their families as part of the research for this film. For
a confidential chat please e-mail sarah.bampton@bbc.co.uk or
philippa.bradley@bbc.co.uk or call 0208 752 6809. Thank you.

 

7.9.01

New Page - Will Somebody Listen? 

TSA AGM in October - more details at the TSA Website

 

Site Search Engine     12.5.01

We've got a new search engine for the site - hope it's better than the last one!  (I'm sure it is)

PicoSearch
  Help

 

Scottish Tourette Syndrome Support Group     9.4.01

The Scottish group now have their own website!

 

Forum, Guestbook and Chat Room - Bravenet Services

On Friday 19th April, my year's subscription to Bravenet Pro service will be up, and from then, you will see advertising banners at the top of those pages.   Hope that's ok.

 

Good Friday - No Chat

I won't be able to be in the chat room on Friday 13th April - sorry.   Happy Easter!

 

Tuesday Morning Chat     2.4.01

There will be no more Tuesday morning chats.  Tomorrow would have been the last one, but Sue apologises as she is unable to be there. 

 

Scottish TS Support Group - Spring Meeting

This info from Janice Mylan of the Scottish TS Support Group

April 25th 2001 in Perth
Baptist Church Hall,  Almond View,  Perth   1pm - 5pm.

We will be showing the episode on TS Medical Mysteries and there is also a speaker, John Fotheringham (Solicitor) who will be giving a talk on Legal Aid and a short talk on the new Human Rights Legislation.   There will be our own Information Stall along with the TSA UK Information Stall manned by Chris Mansley amongst others.   There will also be plenty of time for a  discussion forum and informal chats.


See this page for details on how to contact the Scottish Group

 

24.3.01 Newsletter

 

Tuesday Morning Chat   21.3.01

Sue has been feeling lonely on Tuesday mornings  sad2.gif (3268 bytes)     Please join her and stop her doing her ironing every Tuesday morning!   (10-11am)

 

Ally McBeal & Tourette Syndrome    21.3.01

TS is being featured on the show Ally McBeal.  Apart from an unfortunate story line, the TS appears to be well represented.  The first episode was shown on the satellite channel E4 on Monday night at 9pm and will be repeated on Sunday 25 March at 9pm.  The next 2 Mondays will continue the story.

An article about TS - Tourette Awareness -  with the show's producer, actress and Donald Cohen (TS expert)

Summary of the show here

 

Forthcoming Events

The TSA Website has info about event in Liverpool this month, and upcoming TV and magazine interview.  See this page

 

Happy Birthday!   22.2.01

Hey!                      smile.gif (804 bytes)
The site is one year old today   
We're almost at 20,000 visitors (we'll hit that milestone within the next week) - now averaging 100 visits (not hits which would be far higher) a day
birthday3.gif (11525 bytes)

 

Newsletter  17.2.01

 

The Beast Within    15.2.01

New!  Sent in by Sarah

 

TS Documentary 

Will be shown on Satellite channel - BBC Knowledge on Wednesday 21 February at 9pm.  See here for details

 

History of TS      11.2.01

I received an e-mail this morning, informing me that the link to 'History of Tourette Syndrome' on the links page was dead.  Unfortunately, the page and article have been removed, so I've put together this page

I'm afraid I rarely check all the links on the site, and I am always grateful when people let me know if they're not working

 

Morning Chat      8.2.01

Sue will be hosting a weekly morning chat session 10-11am on Tuesdays  -   Be there!

 

Newsletter 5.2.01

 

Voice Chat      20.1.01

Well - what can I say?  After a successful launch of the voice chat room last evening, Hear Me (the company who supply the script & room) pulled the plug.  I'm desperately trying to sort out the upgrade/replacement, but it's turning into a bit of a nightmare.  I'll leave it for now, and let you know when it's up and running again.

18.1.01

It's been suggested that we have a Voice Chat facility on the site.   Personally, I'm not keen - I don't like telephones - and would much rather type in my messages.  I've created this page so you can try it.  Maybe even I will sometime!  It should be possible to use text too, but I'm not sure how it all works yet - if at all.  The Hear Me website don't offer this programme for download anymore, so I'm afraid I copied the script from another page!   For those of you who prefer to type in text messages - just click on 'text chat'. 

Hear Me Voice Chat

 

TS Documentary 

Will be shown on Satellite channel - BBC Knowledge at 9am on 7 February

 

Newsletter 3.12.00

 

Links Pages   22.10.00

I've had to split the Links pages again as they'd got too big, and therefore too slow to load.  TS Links now cover 2 pages, as does Other Links

 

Contents Page 22.10.00

There are several "hidden" pages on this site - pages that don't appear on the Home page, but are linked from other pages.  I made the Contents Page - and ALL pages are listed there

 

Internet Security    22.10.00

Since several of us were affected by the KAK Worm virus a few weeks ago, I've had a few enquiries about anti-virus programmes and firewalls, and the subject often comes up.  So, made an Internet Security page with basic info and links

 

Animations     22.10.00    smile.gif (804 bytes)

If anyone wants to use animated pictures in the Discussion Forum - go to the Animated Gifs page 

 

Upcoming TV Programmes  (That's Esther)

Esther Rantzen will be featuring Tourette Syndrome on her That's Esther Sunday lunchtime ITV programme - the show will probably be aired sometime in July.  Watch this space!   The BBC Discovery Channel (on satellite and cable) will also be screening a programme about TS - probably in the autumn.   27.7.00  The date of the programme will be Sunday 6 August, ITV lunchtime.     21.10.00 - The BBC Science documentary will be shown sometime in the New Year

 

TSA AGM

Date:          Monday 30 October 2000       Conway Hall, Red Lion Square,  London

Details on the    TSA website             Music at the AGM          Click Here for more info! (Be sure to read all 4 pages)

 

Classified Ads

I've added another Bravenet service.  I don't know whether anyone will want to use it or not...   You can advertise anything here - to sell, hire, lend, give, or swap.  TS Books, Videos or even holidays, cars and dogs - I don't know!! Classified Ads Page

 

Saturday 26 August Chat

Linda will not be able to be there either - so it'll be a chat free weekend.  Check in there anyway though - someone may be around.

 

Sunday Chat  (18.8.00)

I am dropping the Sunday Chat.  I just need to cut down a little, and it's been quieter during the Summer.  Now seems the right time to drop it, as I won't be able to be there for the next 2 Sundays anyway.  Neither will I be there on Friday 25 August.  Sorry!  If anyone would like to host a session - for one occasion, or each week - then please let me know.     

 

New TSA Address

See TSA page!

 

Bravenet Services may be down for 1-2 days    8.8.00

Bravenet will be moving their services onto other servers over the next couple of days - our Forum, Chat and Guestbook will no longer share the same server as a million others.  All their services will now be divided onto many other servers, so that capacity, speed and efficiency is increased.  Bravenet say they will keep us updated via this link.   We may therefore not be able to use the Forum, Chat, Guestbook, site search and feedback form for a day or two   10.8.00 Still not back on-line - they're saying maybe Thursday afternoon (they're 8 hours behind us though!!)  10.8.00  2240hrs - they're back!

 

New Bravenet Links - for Forum, Chat & GuestBook

I've had to change all the links (sigh..) within this site for the Bravenet Services - including the Discussion Forum, Chat Room and Guestbook.  They apparently are being moved to a new server.  For those of you who have these pages in your favourites/bookmarks - you will need to update them!   If anyone finds a link to any of these which link to a site beginning "www3" then please tell me - they should now say "pub3"

 

Chat Room - Tuesdays

Helen will be hosting the Chat Room every Tuesday night 8.30-9.30pm.  If anyone would like to take over hosting the Sunday night chat - please let me know.

Newsletter

Jacquie Williamson from Peterborough runs a TS support group there.   She also produces a newsletter/magazine.  If you would like a copy - then please E-Mail her

 

"LEARNING MUST BE FUN"   20th and 21st JULY 2000

Venue: The University of York    Conference Website

Attention Deficit Hyperactivity Disorder, Language & Communication, Aspergers, Tourette Syndrome, Dyslexia & related difficulties.

International specialists will come together to share with you the latest multi-disciplinary information.

FEES: (includes lunch & am, pm teas) 45 (25 one day only)

Some bursaries for low income families, students, volunteers 20 (12 one day only) check by phone first.

Fun Creche for "the little monsters" 6 a day (thanks to 'Snappy' SEN Volunteers of York)

Need accommodation? Please book before March 30th 2000. Full receipts, info pack etc. sent out late June. This unique conference will be run by dedicated SEN volunteers with professional speakers giving their services freely to assist low income group attendance. The University B&B is situated close to the lake and Central Hall - single 30 - twin 20. Please check availability by phone before sending payment.

For details please send an S.A.E. to:  ADDept (Charity 1072007) c/o Bob Breen,  30, The Paddock, York, Great Britain. YO26 6AW.  Tel. 01904 782556   Mobile 07 99 07 06 028

Favourites Icon (Internet Explorer 4+ only)

If you delete this site from your favourites, return to the Home Page, then add to favourites again - I hope you will see a new icon next to the site name.  Sorry it's another seagull,  I'm afraid I made it myself, and graphics aren't really my thing!  If it doesn't work - don't worry about it!  It's too complicated and unnecessary to bother about!

E-Mail addresses

I know that a lot of people use web-based e-mail addresses (Yahoo or Hotmail), either alone, or in addition to their POP3 (Outlook etc) addresses.  This company offer your name as a free, web based e-mail address, eg.   john@smith.com    Get your firstname@lastname address for free at NamePlanet!    Or you can check if your name is available from the Home page

Life & Strife page    10.6.00

The page seems to be growing now - if anyone else has anything to send in, please do!   Thanks to Linda who's just sent in her story - new addition yesterday.

19.6.00

I've added 2 more pages  Life & Strife 2 - More Stories Life & Strife 3 - Humour  Keep sending in your contributions!

 

Links Page     10.6.00

I've split the Links page into 2.  I was concerned about the length of time the page took to load - from the computer I use at work, it took 80 seconds, which is too long!  My home one takes 20 seconds, which is plenty long enough!  So, now have a page of Tourette Syndrome links, and a page for other links - associated disorders, education etc.   Hope that's OK.

Colour Change 2.6.00

You'll have noticed - if you've visited this site before - that the colours have changed!  If you have any opinions on it - (good or bad!) please reply to the message in the discussion forum.  Thanks!

New Virus Alert  27.5.00

There is a new variant to the recent destructive viruses.  This is the warning I received by e-mail: 

W97M/Resume.a@mm is a variant of the W97M/Melissa family with a very dangerous payload. McAfee AVERT has given it a risk assessment of MEDIUM--ON WATCH. This is a worm and it spreads through email with an attachment in this format:

Subject: Resume - Janet Simons
To: Director of Sales/Marketing,

Message:
Attached is my resume with a list of references contained within. Please feel free to call or email me if you have any further questions regarding my experience. I am looking forward to hearing from you. Sincerely, Janet Simons.

Attachment: Explorer.doc

If the file EXPLORER.DOC is opened, it forwards itself to everyone in your address book. When you close the attachment, it deletes files on your hard-drive.
Please do not open the attachment. For more information about this worm, go to McAfee.com Virus Information Library.

 

This Site has Moved!  Update 12.5.00

Because I had to change my ISP (Internet Service Provider) it has become more and more difficult to maintain the site at my old ISP.  Whenever I update or make any changes, I have to disconnect from my new ISP, and re-connect with the old one.  I pay a monthly flat rate for my new one (with free call charges), whereas when working on the site, I have to pay the call charges.  I'm therefore paying twice!!  The only way around this problem is to move.  The new address ( www.tourettesyndrome.co.uk )  is one that some people have been using anyway - and they have been forwarded to www.tourette.fsnet.co.uk).   I apologise for this - initially it's a lot of work for me because I have to let all the search engines and others know about the change, but it's a necessary one.  This should now be our permanent address!  The address of the discussion forum etc will not change, so you'll not need to update those bookmarks. I may keep a mirror site here for a while - or  just put up a page that automatically redirects to the new site.   12.5.00 The site has now moved and all seems to be well.   Please let me know if you have any problems.  I've left an automatic redirect page at the old site.  (Too complicated to keep a mirror site!)  

17.7.00  If it's easier (certainly shorter!) use www.tosy.co.uk address.  It even works without the www!      to=tourette    sy=syndrome     www.tourettesyndrome.co.uk has also now been set to work with or without the www.

CHAT ROOM      Update 10.5.00

I'll be there every Friday  7-8pm and Sunday 9.30-10.30pm.    Linda will host Saturdays 9-10pm.  It's available at any time though  - arrange to meet up with someone there and chat in "real time".  Hope you enjoy it.    If anyone would like to host a chat session at any other regular time each week - please let me know and I'll advertise it.   If you would like to do so, but also at a weekend - that's fine - you could do another hour or so earlier or later.  A weekend afternoon for families with younger children too.  Or a dedicated teen evening.  Whatever!  If there is a problem, and Bravenet are down, then - Back-up Chat Room

4.5.00 The Love Bug

There is a newer, and far more damaging virus circulating worldwide and causing computers everywhere to crash.  Like other viruses, it replicates via your e-mail address book.  It comes entitled "I Love You" or "A Love Letter to You", and has an attachment (which may be called "ou.txt.vbs". DO NOT OPEN THE ATTACHMENT - DELETE IT IMMEDIATELY!!    Check out this link  uk.news.yahoo.com/000504/91/a5ofj.html     5.5.00  It is reported that this virus is replicating and using other names such as "joke" and "mothers day".

Explaining Tics

David Bowles, from Education Support, wrote an excellent article about "Explaining Tics".  He's given me permission to reproduce it on the site.

TS articles in the Media

Please see the discussions in the forum about several articles in the media about tourette syndrome - the articles are far from accurate, and only serve to perpetuate the prejudice and misunderstanding people have of TS.  If we all wrote to the authors - or at least to the website, newspaper, TV company etc concerned, then they would have to act.  I would hope it would have a positive effect of educating those people about TS - and they are in a great position to educate and inform others.  Let's get pro-active!!

European Conference

Apparently there will be the 1st European Symposium on TS,  held in Copenhagen on October 19th.  Roger Freeman, Mary Robertson, Sue Connors, and Harvey Singer, will be speaking,  plus a number of local speakers. There will be a session on organizing a European TS Association too.   Here's the link to their web site with details of the programme.  You need to click on the "Eur. Symp. on Tourette Synd." in the "select page" pull down menu, at top right of screen!

Alternative/Complementary Therapies    NEW!! 22.4.00

There has been some discussion in the forum, and I've also received a few e-mails requesting information in this area.  As a result, we now have an alternative & complementary therapies page.  I have minimal knowledge in this area, and I really would appreciate any input!  If you know of any particular therapy that's helped you, or have knowledge of any research or links to relevant web sites - please e-mail me.  Or better still share the information with everyone in the discussion forum!

UK DISCUSSION FORUM  

Please come and post a question, meet new friends, ask for some advice, answer someone else's question, or provide some advice.  Collectively, we all have so much knowledge and experience to offer each other.   If you want to know how the forum operates - here's the Discussion Forum FAQ

E-Mail Directory/Guestbook 

Post a message in the E-Mail Directory if  you would like to be able to contact another TS family in the UK, or if you would be willing to have others contact you for friendship and advice.  One lady would like to especially hear from any other Jewish TS families.  I've also heard from a teenager wanting contact with someone else with TS.   Go to the Guestbook/E-Mail Directory and request a cyber-penfriend!  If you would rather not make your e-mail address public, then post your message in the Guestbook/E-Mail Directory, but use this address:  yourname@tourettesyndrome.co.uk as your e-mail address, then be sure to send me your own address so I know where to forward on the e-mails to!   If you post a "private" message in the Guestbook, only I will be able to read it.  If you're under 18, please check with your parents before replying to any e-mails you receive from people you don't know.   Don't arrange to meet up with people who e-mail you - some people may not be who they say they are!  Don't tell anyone your telephone number or home address either.

 

Tinypark or Prettypark.exe virus

I've just received 2 e-mails with the above attachments.  Fortunately I'd been pre-warned that they were a virus and didn't open it.  Apparently it won't do a lot of damage, just replicates itself and sends attachments (as e-mails) to everyone in your address book every 30 minutes!!  Information about this virus, and how to get rid of it at  McAfee.com

School Days  ITV  Sunday 27.2.00  7pm

11 year old Abdul was featured on the ITV secondary school documentary “School Days” on Sunday 27th February.  He made it to the top of the school’s “pest list” for his year.  (In spite of earning several merit certificates for his work)  Why?  Because he makes noises in class.  He also had various motor tics.  After a day’s observation by an educational “expert”, she came to the conclusion “it looks like tourette’s”.  Perhaps other parents around the UK watching this, may recognise their own children’s tics as a result.   Thank you to Abdul and his parents for letting him feature! 

Daily Express 22.2.2000

An article appeared in the Daily Express on pages 16 & 17, titled “Demon nicotine is hailed as new wonder drug”.  It is reported (by Michael Hanlon) that nicotine patches “can help conditions ranging from hyperactivity in children to people suffering from Alzheimer’s and Parkinson’s Disease, as well as a rare disorder called Tourette’s Syndrome.  Studies using nicotine patches showed significant improvement in children with ADHD and in another group with Tourette’s – a condition that makes sufferers call out obscenities involuntarily”.  The articles goes on to say that the patches also cause significant side effects.  “These include nausea and itchy skin where the patch is applied.  Scientists are now looking into synthetic chemicals which mimic the effects of nicotine without making the patients ill”. 

The piece of the article I object to is “a condition that makes sufferers call out obscenities involuntarily” – but it is unfortunately the common misconception, perpetualised by the media.  Less than 15% of TS sufferers ever have coprolalia. 

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Poster

If you want to display a poster, advertising the web site, at your local tourette clinic - please download this Microsoft Word Poster.   (Looks nicer on pale blue paper!!) 

 

   

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19 October 2002  Date last updated