Swearing disease no joke for Dylan

By Nottingham Post - November 11, 2013

Many people think they know what it means to have Tourette's syndrome – indeed, we can all probably rattle off a couple of sick jokes about the disorder.

It's commonly known as the "swearing disease" where sufferers spontaneously shout out oaths or rude words and thereby cause much hilarity – like Big Brother winner Pete Bennett and the guy from Shameless.

But it's only when you meet someone like Dylan Wilson, from Ruddington, that you really understand what having Tourette's means.

Yes, the charming and funny 13 year old does the swearing thing – it's called coprolalia to be accurate – but it's his other tics (or "botherers" as he likes to call them) that make everyday life a struggle.

Sudden uncontrollable jerks of his body, violent twitching, striking himself, banging his head against the wall up to 200 times an hour, not being able to sleep all night because his eyes are rolling or nose is twitching, obsessive compulsive behaviour. Dylan's got them all.

He often uses a wheelchair because he has difficulty controlling his leg muscles – and he is in almost constant danger of choking because his throat can tighten uncontrollably at any moment.

Mum Rachel, 40, and dad Ian, 47, can't leave the youngster on his own for a moment in case he seriously injures himself – he's currently living downstairs at home because he's developed an uncontrollable habit of throwing himself on the floor (which could easily result in him falling downstairs).

"Sometimes I get a feeling," explains the Rushcliffe Comprehensive School pupil. "I get this feeling in my back when I'm about to get really 'tickie' and I can give a warning to people that I'm going to get one of my tics. Other times, it comes out of the blue.

"It can come out when I'm angry or stressed. Or even come out when I'm relaxed. I just never know."

Around one in 100 children develop the inherited neurological condition, but only one in ten of those youngsters will have the swearing tic.

Dylan is at the extreme end of the spectrum and has the disorder in a chronic form.

Rachel says she first started having concerns about her son when he was around four and started doing odd movements with his hands. He would also run around with his two little fingers sticking out awkwardly.

By the time Dylan was at James Peacock First School, he'd developed eye-rolling and eye-clinching habits as well as nose twitching and a few vocal noises – and the family started putting two and two together.

After eventually being referred to a specialist clinic at the Queen's Medical Centre, he was diagnosed at the age of six.

"I had mixed feelings at that point," admits Rachel. "I partly thought I might have been going bonkers. I was convinced it was Tourette's but other people were saying don't be daft. And I was relieved at that point because it was decided the Tourette's was only mild, so there was no need for any medication."

Dylan's condition was fairly stable for several years. But then when he was coming up to the end of year five, things changed dramatically.

Rachel says: "The Tourette's got very severe – almost overnight things got very scary and intense. Dylan started doing self-harming tics and violent tics towards us, ending in a trip to A & E.

"It all came so suddenly and out of the blue and we were completely freaked out by it. The tics were going on and on and we couldn't see an end to it. He was pounding his own head all night."

The crisis went on for several weeks and Dylan was given medication to help him cope. There is no actual "treatment" for Tourette's but some anti-psychotic drugs are successful – although side-effects include severe drowsiness.

Ian stresses that people with Tourette's are all very different – some have it so mildly they might not notice it, for Dylan, life can be very difficult.

One moment, he'll be talking very quietly, the next he'll make a slight jerk, and Rachel and Ian will spring into action. They'll take hold of his arms and sit with him on the sofa, cuddling him so close that he's not able to move his arms. Such episodes can last hours.

Ian says: "The way the tics present every day, there's no pattern. Sometimes Dylan wakes up at half five and one of us needs to sit with him all morning. Other days he's fine.

"Sometimes he can have movement tics which mean we've got to sit with him to keep him safe. Other days, it's merely vocal stuff and we can get on with things as normal.

"We can't drive anywhere with Dylan with just one of us, there has to be someone else in the car for safety reasons."

Rachel adds: "It makes him very tired. This is what people don't understand with all the focus on the swearing side of Tourette's. The constant nose twitching and stuff, it stops him sleeping and it can be going on for three days."

The transition to secondary school is often a tricky time for kids with Tourette's and Dylan has struggled, missing much of his first year.

At present, he can manage about two hours a day of classes at Rushcliffe, although he regularly has to have a day off because of tiredness or a particularly stressful episode.

Ian works full-time as a business advisor but Rachel is at home full-time as a carer.

"We do get some extra help from befrienders and people like that too," explains Ian.

Many people who suffer from Tourette's will also have obsessive compulsive behaviour.

Ian explains: "Say if Dylan burned his hand on the radiator, he'd say 'ouch' but then have to even it up and burn his other hand too."

The teenager has had tic intervention therapy and habit reversing treatment to help him deal with his behaviour.

"He's had to learn an incredible awareness of his own body," says Ian. "If he feels he's going to put his arm out, the therapy has helped him know how to change it from an awkward jerk to, say, putting his hand on his knee or something.

"But sometimes the tics are so severe that doesn't work."

Dylan prefers it when he's not on strong doses of medication and he has his own way of treating his symptoms.

"It sometimes helps when I'm concentrating on something," he explains.

Rachel says: "We try and find other things to help him relax. Swimming can be good – but then his compulsions will make him try and drown himself. But we still go. He used to play a lot of sport and that helped because his mind was engaged."

There is also an awful lot of humour and silliness in this very close-knit family – and they try to live life as normally as they possibly can.

Rachel explains: "Dylan got to the point where he wanted to hide himself away and I just said no, that's not happening. It would be so easy to do that and just become housebound. But we've got to live as much as we can and try to enjoy things."

Dylan's coprolalia can often lead to giggles – he's even managed to invent a new phrase which he now tries to say if he feels a swear word coming on.

"I say 'scum baguette!' instead," he chuckles. "My mum and dad have even started saying that when they want to swear now, I want to get it in the dictionary!"

It's all about laughing with and not at the disorder, says Rachel.

"Luckily, Dylan's not been teased that much, just the odd occasion," she says. "He takes it all in his stride – he's resilient because he's had the tics from a young age."

At this point, Dylan interrupts to point out the one occasion when he didn't see the funny side.

"I remember we were in the Broadmarsh and there was this shop where they had this T-shirt called Tourette's Bunnys – and it was basically just rabbits swearing. It really upset me and I ran out of the shop crying."

Rachel continues: "There will always be that negative side. With the vocal tics he might come out with something strange about how many stripes a tiger has and it can be quite funny. But, say if we were going out to eat, Dylan can be quite self conscious and he'll say he doesn't want to ruin it for other people. He won't go to the theatre because he doesn't want to ruin other people's enjoyment.

"But we try and say it's for other people to deal with, not us. We can explain and try and educate people. Actually, when you've got the swearing tic, it's more likely that people will be understanding and nod, 'oh he's got Tourette's', whereas with the eye tics or something people are giving us funny looks all the time."

The family is hoping to pass on its wealth of experience by helping to run the re-launched Tourette's Action Group in Nottingham.

They held their first meeting in September and hope to organise regular gatherings and fundraising activities to support each other and raise awareness of the condition.

Rachel says: "We still hear of families taking their children to their GP only for the doctor to say 'it can't be Tourette's because they don't swear'."

For information about the Nottingham Tourette's Action Group, contact Julie Collier on 07725 819866.

Dylan often writes blog posts on www.touretteshero.com, run by artist Jessica Thom . You can also see several films he's made for video sharing website YouTube if you search under "Dylan Wilson".