Voice 1
Hello, and welcome to Spotlight. I'm Marina Santee.
Voice 2
And I'm Ruby Jones. This programme uses a special English method of broadcasting. It is easier for people to understand, no matter where in the world they live.
Voice 3
"A tic comes into my head - an uncontrolled urge to move a part of my body. And I try my best to hold it in... I get this feeling like everything inside me is moving around. I get pressure in my chest. I feel hot and cold. I have to release that tic. If not, these feelings will not go away."
Voice 1
A man called John said these words. John is describing the medical condition that he suffers from. It is called Tourette's Syndrome. Tourette's Syndrome causes John's body to make sudden, quick movements. Our muscles make it possible for the body to move. And usually our brain controls their movements. But John suffers from tics. These are sudden movements of groups of muscles in the body. And John has no control over them! He does not know when he may move his arm and hit the person next to him. He does not know when a tic in his leg muscles may cause him to jump in the air.
Voice 2
These sudden physical movements are bad enough. But John also experiences vocal tics - tics that affect his voice. A vocal tic gives him the urge to shout out words suddenly and loudly. These could be words that somebody has just said. Or they could be words that people consider to be bad language. This may happen to him at any time - alone or in public. If John does shout out when people are around, he feels guilty and ashamed. He worries about what people may think of him. They do not know that he suffers from a medical condition. They may judge him on his behaviour. John says:
Voice 3
"In my head I have a picture of what is going to happen. People are going to look at me. They are going to hear me shout a particular thing and think, ‘What a strange person!'"
Voice 2
Or, some people do know about Tourette's Syndrome. But for them, it is a bit of a joke. John continues:
Voice 3
"You ask anyone what the funniest sickness or condition that they have heard of. Most people will say Tourette's. Why? Because it is strange. It is like being wildly insane."
Voice 1
Gilles de la Tourette was a doctor from France. He lived in the 1800s. He was particularly interested in medical conditions affecting the body's nerve system. In 1884, Tourette wrote about nine different patients. Each one suffered from physical and vocal tics that they could not control. Tourette named this condition, "La maladie des tics" - French for "the sickness of tics". One of these patients was the Marquise de Dampierre. Tourette wrote about her:
Voice 4
"At the age of seven, Marquise de Dampierre experienced violent movements of the hand and arms...after each violent movement, her hand movements became more normal and better controlled. This was until another violent movement stopped her from working. People thought that she was too excited and badly behaved."
Voice 1
When she was older, the Marquise de Dampierre also suffered from vocal tics. Tourette observed:
Voice 4
"In the middle of an interesting talk, suddenly, and without being able to prevent it, she stops what she is saying or what she is listening to with horrible screams. Or she uses words that are even more unusual than her screams! This behaviour is so different from her usual good behaviour."
Voice 1
Doctor Tourette looked at all the medical evidence. And he decided that there were seven signs that showed someone was suffering from Tourette's Syndrome:
One: It usually developed when the person was between the ages of seven and ten.
Voice 2
Two: It affected more males than females.
Voice 1
Three: the condition was genetic.
Voice 2
Four: the patient's tics usually started in the face or upper body.
Voice 1
Five: the patient did not present the signs of this condition all the time. The tics came suddenly - and then they stopped.
Voice 2
Six: the tics were made worse by worry and lack of sleep.
Voice 1
Seven: this condition did not make the patient's mental state become worse.
Voice 2
Most people who suffer from Tourette's Syndrome say that the hardest thing about the condition is people's lack of understanding. This was true for a girl called Gusti Ayu. Gusti lives in Bali, an island in Indonesia. Her story is told in a film called "Movement and Madness." A man called Robert Lemelson made this film. He first went to Bali in 1996. He was part of a medical research project. Lemelson wanted to find out how people with different mental conditions survived in small, lonely communities. People there do not have the medical knowledge from hospitals or experts in large cities. They depend on local knowledge passed from generation to generation. It was during this time that Lemelson met Gusti. Gusti has Tourette's Syndrome. She struggled with managing her condition. And she struggled with people's attitude towards her. Gusti's experiences influenced Lemelson greatly. He wanted to do something about her situation.
Voice 1
So, Lemelson decided to make a film about Gusti. The whole process took eight years. The film began at the point where Lemelson identified Gusti's Tourette's Syndrome. In the local culture, there was no name for such a medical condition. So, her family treated Gusti as if she were insane. This left Gusti feeling very alone. Lemelson offered Gusti some medicine that could help her condition. The family agreed. And Gusti's state improved. However, the medicine did not stop the Tourette's Syndrome completely. This discouraged her family. So, they turned to local traditional healers for help. The film shows how Gusti learns to take control of her own life while respecting the opinions of those around her. In turn, her family and community learn to understand her condition better - and to accept her as the special human being that she is.
Voice 2
Scientists still have found no cure for Tourette's Syndrome. However, with the work of doctors and health experts today, people know much more than they once did. Increased knowledge has enabled communities to understand people with Tourette's Syndrome better. And understanding helps create a willingness to accept people with the condition. And acceptance is half the battle won already.
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