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Letzte Aktualisierung:
Tuesday, 13-Jun-2017 13:18:19 CEST

 

 

 

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The Click to the Tic

Communication via internet and online medias is getting more popular. So more and more special interest groups use this possibility to communicate their personal views and opinions. So do the people with the Tourette Syndrome. An interactive journey to the online world of the Tourette Syndrome.

by Jesko Johannsen

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Press Overview

Vancouver Island, Canada. 4.30 a.m. Maria (Name changed) gets up. She goes to her computer and starts to check her mails. 26 new mails this cold morning. Quite a lot according to the fact, that she checked her mails last time the day before at 8 p.m. But for Maria it´s important to read all these mails and answer some of them. Up to 100 each day. Some only contain a very brief thank you.

This might sound like a normal day in the life of a person who loves the internet. But Marias motivation is different. She uses the internet to communicate with people who have to deal with the same problems as she has to. Maria has TS. The Gilles de la Tourette Syndrome. The Tourette Syndrome (TS) is a neurological disorder. It causes people to make movements and noises such as blinking and echolalia. These Tics cannot be controlled. They can also contain uncontrolled swearing, so called coprolalia, and compulsive acts.

Some people have a strong developed TS, ticing nearly continuously and some don’t even now that they have a Tic. But a Tic doesn’t automatically have to be TS.

The exact number of affected people is unknown. Many of the people affected by this disease call TS the "It" in themselves.

 

She interrupts with bizarre cries and extraordinary words

The disorder has its name from the French neurologist Dr. Georges Gilles de la Tourette. He was the first to describe the disorder´s symptoms in 1885 on his patients.

A fellow neurologist described one of his patients to Tourette: "...in the middle of a conversation that interests her, suddenly, without being able to avoid it, she interrupts with bizarre cries and extraordinary words."

TS expert Dr. Kirsten Müller-Vahl from the Medizinische Hochschule Hannover is researching many years on TS. "Last years researches made more clear that there are genetical as well as nongenetical reasons.", she explains. On the nongenetical side there are for example the so called neurotransmitter which are responsible for carrying signals from one brain cell to another. "Researches confirms again and again, that the neurotransmitter Dopamin plays an important role. Which one is not yet clear.", Dr. Müller-Vahl tells. If there is too much of this neurotransmitter it could, according to the hypothesis, affect the motioncontrol in a way a person is not able control.

In Canada Maria is still writing her mails. "I have TS/severe OCD and ADHD and a few other diseases behind my name.", she’s writing in one of her mails this morning. But there is more she wants to tell all the people out there. "I'm also Julia and Brad's mom. They are 11 and 8 years old and both have TS/OCD/anxiety/ADHD. Both are on medication, as am I."

Noone who reads Marias mails knows how she acts in front of the computer while she´s writing all these mails. Getting from one Tic to another it’s difficult for her to type. Tests say that people with TS everyday use as much energy as is needed for a marathon.

For Maria the internet and especially the mailing list is like a big family. Here she can talk to all the other people with Tourette. And all the other people with or without TS see and read what she thinks and not how she behaves.

In the internet people with TS can articulate freely. Talk to others. Find help. And be with each other. Find someone to talk to if they need to. Get the latest informations, have fun together.

 

An electronic trip

To visit all these people is very easy in ourdays. Start from wherever you are. At home, at work, at university or in an internet café. The only necessity is a computer and an internet access.

Start easily and the popular searchengine www.altavista.com gives you already more than 17.000 matches for "Tourette". And immediately there is a gateway to nearly everything about TS. Homepages and mailinglists. News-groups and chats. Bookstores and medical reports. There are no borders.

In the online service www.deja.com everybody can build a community on his special interest. So did already some people on TS.

The fastest way to reach many people with the same interest with an ordinary mail is to join a mailinglist. A quick search for Tourette on the mailing- and discussionlist server www.topica.com matches already seven mailinglists and more than 30 entries in newslists, which don’t have Tourette as main topic. There are also medical advices like on www.mentalhealth.com and medical searchengines like www. enigma.co.nz online.

So TS is more and more present on the web and it will continue as the latest developements show.

But informations on the internet aren´t always very reliable and should be doublechecked. Especially if they contain medical advices, explanations and research results. There is a lot of research about TS and many different opinions and results are published online. It´s fast and easy to go online. So not every online written word has to be true.

Some Homepages tell stories about famous people with TS. Like on the Homepage of the TS Association USA about Mohammad Abdul-Rauf. His compulsion to hit the basket with his basketball ten times in a row with a special curve and sound made him one of the most unerring NBA players.

 

A huge online forum

Down on the street in the old city center of Lüneburg in northern Germany is everyday live. Nothing indicates the turbulences in a 45 sqm big attic flat. When 26 year old Christian Hempel is at home it seems, that there won’t be a quiet second. Stamping, moving and shouting obscene words are the Tics he has been used to for many years. Nearly without breaks.

"I see an opportunity in Tourette. I´m used to say Tourette is nice. There is something good and special about us and we can use TS and deal with it.", he tells.

As webmaster for the Tourette Gesellschaft Deutschland (TGD) and founder of the more famous getting "Tourette Online" Service he has a lot to do. He is designing and updating the websites of the TGD which everyone can visit permanently on www.tourette.de. But one of the most important things is to inform people without TS. To support and inform mass media and connect people. And it works. Sometimes he gets mails from people, who live very far away. Like the one from Japan a few weeks ago. These are big successes to him.

"Too many people on the street still don’t know who we are and why we behave like this." Christian explains. For him it´s important, that everybody knows, that TS is only a neurological disorder and that people with TS otherwise are "normal". The internet is giving Christian the opportunity to develop a huge online forum, where everyone is able to make himself heard and to tell about his situation. "Too often I have to explain, what TS is and why I have to shout all these words. And too often people don´t accept what I’m explaining.", he complains. And then he tells one of his worst experiences he once had on a train trip in northern Germany.

After many explanations a female conductor of the Deutsche Bahn AG still didn’t want to believe his story about this Syndrome and that he can’t control the Tics. So she locked him into a railway compartment with the help of another passenger. For Christian it took hours to calm down again.

 

"Sometimes I have to flee"

But even after experiences like this he feels, that he has to go on with his public work. Even if he’s doing it most of the time from his home.

"But sometimes I have to flee. In the summertime I take bathes in my paddling pool on my balcony or at a near riverbank. Lying there in the sun makes me feel free for a while.", he tells.

The internet and its possibilities to communicate to each other is for sure one of the reasons why TS got an increasing interest throughout the last years. In the early 70´s the Tourette Syndrome Association (TSA) in the USA had only about twenty members. Today it has more then twentythousand. More and more people have heard at least once about this people.

Marias favourite mailinglist has 78 members today. This mailinglist is about 6 years old. But the first few years there were only about 30 members with little traffic of people coming and going. But in the last months the list was suddenly growing fast and today there are many people coming and going permanently.

 

New ways of treatment

Back in Hannover Dr. Müller-Vahl is researching on new possibilities to treat people with TS without using the common medications.

"A possibility to heal people with TS is still far away", Dr. Müller-Vahl explains. But some latest research projects show new directions. "We just finished a research in which we could show an effect with the active agent of cannabis." In this study 82% of the patients who used Cannabis experienced a reduction or complete remission of the Tics. These results support evidence that Komponenten of marijuana reduce the symptons of TS. "We are continuing this study now.", tells Dr. Müller-Vahl. Maybe a new hope for people with TS.

Until then people with TS will surely use the internet more and more and its related medias to make themselves heard. And as the development until today shows it does work and it is to expect that it will do so and work in the future.

Christian wants to sit till late in the night today and work on the Tourette Homepage.

And before Maria goes to bed she checks her mails one more time. And so she will tomorrow morning.

© Jesko Johannsen 2000

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