Page last updated at 09:30 GMT, Wednesday, 14 October 2009 10:30 UK

A life transformed by Tourette's

By Paul Costello
BBC News, Newcastle


Mr Stevenson recorded himself after the symptoms developed and also playing with his children just weeks before they were 'triggered'

Former nightclub bouncer Paul Stevenson was busying himself as a stay-at-home dad when Tourette syndrome turned his life upside down at age 46.

Until the start of this year he had shown no signs of the expletive-laden and often "bizarre" outbursts which now form a constant part of his daily routine.

The father-of-three now shouts "I'm a gay man" as he wakes next to his wife in the morning and can't prevent himself from swearing in front of his young children.

He also battles with violent body jerks, some of which can leave him feeling like he has suffered whiplash in a car accident.

Paul Stevenson
Mr Stevenson with his wife Carol and son Harvey

For the vast majority of sufferers the early signs of the syndrome are noticed in childhood, with tics reducing in severity as the person gets older.

But the ex-doorman believes certain mild symptoms were not spotted in his youth and that his now severe condition was triggered by the trauma of his best friend committing suicide in March.

Mr Stevenson, of Scremerston, near Berwick, Northumberland, said: "He was like a brother to me, so the news of his death hit me really bad.

"At the crematorium I could not stop my legs from moving and at the wake I got the vocal tic for the first time, I started grunting and making other noises.

"Week by week it started getting worse and when I went to my GP he did not understand what was happening. I thought I was going mad."

In August he was finally diagnosed as having Tourette syndrome with Coprolalia, which is the form of the condition which involves involuntary swearing.

Named after French neurologist Dr George Gilles de la Tourette
Often inherited although its cause is not yet known
Could involve abnormal processing of brain chemicals including dopamine
It is estimated about 300,000 people have the condition in the UK
Believed to affect up to one in every 100 schoolchildren
The symptoms usually emerge between the ages of five and 18
Fewer than 15% of people with the syndrome display the obscene language tic
Sources: TSA and Tourettes Action UK

Before this year, the only clues to the severe vocal and motor tics he now suffers had been body spasms that he had experienced a "handful of times" from the age of 15.

His parents have also since recalled that he would sniff and touch his face excessively as a child.

Consultant neurologist Dr Paul Goldsmith, who is treating Mr Stevenson at Newcastle's Royal Victoria Infirmary, said there was often a "forgotten history" of childhood tics when symptoms presented in adulthood.

He said: "The prognosis for childhood Tourette's is good, with most improving into adulthood.

"For the rare cases with adult presentations, the prognosis is more variable. Some wax and wane, some improve, some persist."

He said it was difficult to draw any meaningful conclusions about whether the severe symptoms had been triggered by trauma.

Mr Stevenson, who is originally from Darwen in Lancashire, said he was determined to come to terms with the dramatic change in his life, despite admitting to a current reluctance to leave his home.

He said: "Other than attempting to suppress the urge, I have no control over what I'm going to say and the tic is like a lottery machine in that it just says what pops into your mind.

John Davidson with dog Tilly
John Davidson has given the former bouncer "pep talks"

"I was speaking to a police officer recently and shouted out 'I sell drugs to kids'.

"I realise that it is bizarre and that it can be humorous but I can despair at times.

"People have followed me in the street thinking it's funny and obviously some people just stare at you like you're from a different planet.

"Luckily my wife Carol is fantastic and we tell our children that I can't help it and that they are not to repeat what I say."

He says his life would be even more difficult if it had not been for the BBC's QED programme John's Not Mad, which brought the condition to national awareness in 1989.

Indeed, John Davidson, whose Tourette's was the focus of the documentary, is now advising him on coping with the condition.

Both are members of Tourette Scotland, a charity based in Perth, which provides information and support to sufferers.

Support Worker Janice Mylan, who has two sons with the syndrome, said: "It makes a big difference to meet people who have gone through the experience.

"It can be very isolating as you are told you have something rare and that can be scary."

Mr Stevenson, who is also battling with obsessive-compulsive disorder - a common accompaniment of Tourette syndrome - is now being treated with anti-depressants.

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