A Window Cleaning Tourettes Sufferer

Window Cleaner Paul, left, with John Davidson.

Tourette's sufferers hope film will help dispel myths of condition: The first thing you notice about Paul Stevenson is just how well spoken he is, despite having the most severe form of Tourette’s Syndrome. When he is not “ticking” and uncontrollably yelling random words or offensive phrases, he is thoughtful, deliberate and comes across as an intelligent man committed to working as hard as he can to help improve the life of others with his condition.

Paul, from the Borders, has teamed up with Galashiels-born campaigner John Davidson, star of the John’s Not Mad series of TV documentaries, for a new show about their attempts to create the country’s first ever Tourette’s holiday camp. Paul appears in the National Geographic Channel special Strange Behaviours tomorrow night, which looks at their bid to raise awareness of the illness, and to found their dream retreat in the West Highlands.

The father-of-four had to quit his job as a window cleaner due to the physical ticks, and is usually too afraid to leave the house or go on holiday because of people’s reactions to his involuntary outbursts of swear words and insults. So he has teamed up with John, and fellow Tourette’s documentary star Stuart “Chopper” Colquhoun, to create a secluded spot where people with the same disability can relax, free from judgment and ridicule.

Paul said: “At times I feel ridiculed by my condition because I can’t control my body. “I always remember one time I was picking the kids up from the school and I was having ticks and saw my reflection. I looked like the village idiot, I was out of control. “I live in a small town and everybody here knows me and knows I have Tourette’s. “And when I was first diagnosed I went round all the shops and supermarkets and the police station with leaflets.

“But we get a lot of tourists here during the holiday season and it can be very hard dealing with strangers. “I’ve been in a chip shop and just suddenly shouted at the entire queue to f*** off. “You have to apologise and explain to these frightened people, but they were alright once they knew what had happened. “I’ve also had people take a swing at me. The worst thing, though, is that people like to watch you. “I’ve had several times when people have filmed me on their phones, following me around to see what I do. “That is so humiliating and degrading. I can be out with my kids and people are making fun of me. It’s a disability and people wouldn’t dream of following someone in a wheelchair and filming them.”

Paul’s life was changed forever when he suffered his first tick – the motor function spasms of the body, which help define the illness – three years ago at a close friend’s funeral. His nervous twitches were followed by involuntary gasps and then he started yelling “hey hey”, before it developed into the full-on coprolalia form of the illness. Some of the married father’s outbursts include “I’m a gay man”, “I’ve got a gay leg”, or “gastric band”. The words and phrases Paul comes out with are entirely involuntary and unpredictable. The only common factor is they are usually the most inappropriate thing to say in any given scenario.

Paul, 48, who currently lives in Berwick-upon-Tweed but used to live in Jedburgh and has Border hopped his whole life, admits being exasperated by ignorance and ridicule of the disability. This was highlighted when the Prime Minister made cruel, off-hand comments (which he later apologised for) describing watching Shadow ­Chancellor Ed Balls’ Commons performance as, “like having someone with Tourette’s permanently sitting opposite you”.

While the disease has become shorthand for bad language and comedy-style swearing, Paul said he, John and their support group are trying hard to provide some peace for everyone in their situation. “The first thing I would say to anybody who is diagnosed with Tourette’s is to get yourself a support group network – that’s the most important thing in the world. “Your family will be a great help to you but it’s so important to be able to speak to people who know exactly what you are going through. “I thought my life was over. I didn’t go out and I didn’t want to see anyone in case I frightened them, or they were staring at me. “But you have to see yourself as others see you. I know I’m not out of control but I don’t blame people for staring at me, it’s done out of ignorance of the condition.

“It was meeting John and Stuart that made all the difference to me. “They helped me get back on my feet and get on with my life. “That’s why we work together to run support groups and help others not to feel alienated. “The documentaries about John made a huge difference to how the illness is seen across the country and that’s why I agreed to take part in the new programme, to show what our lives are really like.” The new programme features Paul, John and Stuart heading off to the Scottish Highlands, to Arisaig, in order to find locations for a campsite they would love to set up for Tourette’s sufferers.

Paul said: “We started up our group TLC (Tourette’s Lifelong Care) and one of our ideas is to get a campsite for people to feel relaxed. “On holiday, I have felt under siege because the anxiety of worrying about ticking makes it worse and I am so worried about the attention. “We’d just like to be at peace with other people. “Our idea is to buy a static caravan in Scotland and offer it out to families with Tourette’s, whether it’s the parents or the kids, and we had been invited up to Arisaig by a lovely lady who wanted to help out. “I’d love to set up a place like that as it’d be a great help to people. “We had a residential meeting in Galashiels where everyone stayed together and that worked out well.

“A summer camp, like they have in America (called Twitch and Shout), would be our main ambition. “It might be a while away at the moment, but it could be something that could help people long after we are gone. ”So if anybody would like to help, or has any land we could use, we’d be grateful if they got in touch.” Speaking out was vital step

For the past 23 years John Davidson (pictured) has been the face – and the sound – of Tourette’s Syndrome in Britain. The Galashiels-born caretaker, who is now 40, amazed the nation with his touching and heartfelt story of isolation in the 1989 documentary John’s Not Mad, which basically introduced the British public to the condition. Since then he has helped others cope with the condition, including Stuart Colquhoun, with whom he starred in the 2009 programme, I Swear I Can’t Help It, and Paul in the latest programme Strange Behaviours.

John said: “I’ve grown up with Tourette’s and Tourette’s has grown up with me, so I’ve managed to balance things and get used to it. “But for people like Stuart and Paul, who have had late onset in their adult lives, it can be a huge problem and change for their lives. “So I consider it a pleasure and a responsibility to be able to help others. “I feel that because a lot of people saw me on television talking about Tourette’s it is important I represent people with the condition in the right way – and help others. “There is still a lot of work to do with raising awareness and letting people know the truth rather than stereotypes.”