Living with Tourette Syndrome - personal experiences

Tom is 23. He has had TS for the whole of his life but was only recently diagnosed. For 14 years, he's been writing, performing and producing his own music, a unique style of funky hip-hop he calls 'Word Magic'. He also draws cartoons, designs and programmes video games, restores and customises motorcycles and writes comedy and horror movie scripts.

In They Don't Know Jack (The Tourettes Song) he emphasises the relationship between TS and forms of artistic expression. "I want to encourage many others with TS to use their creativity to its fullest potential."

 Tom ('Carpy') followed in his father's footsteps and became a DJ when he was 13 years old, also the year he ws diagnosed with TS.

His great passion is to sing swing, main influence is Michael Buble. When he was 14 his dream came true and he headlined his own concert at the Frome Memorial Theatre in a fundraiser for Tourettes Action. Later in the year, on a holiday P&O cruise, he took part in a talent contest and was invited back to headline his own show for the final night's cabaret.

 

Tom was nine when he won a silver medal in the British Tae Kwondo Championships, competing against young people from all over Britain, ireland and Holland.

"Tae Kwondo is an extremely disciplined sport. No one would know, watching him compete, that Tom has TS," says his mother Sally. "He has a really good sporting attitude, too. When he's beaten he shakes his opponent's hand and says 'well done'.

 

Francesca was diagnosed with TS aged 8. "I remember being frightened by the prospect of having a lifelong disease." However, inspired by a brilliant GCSE English teacher, she became friends with Hayley.

"I'd never met someone as passionate and focused. I felt an overwhelming belief in myself and my dreams of film making. I was 14 when I realised that if I put my mind to it, the things that I wanted to do were truly possible. Hayley and I co- directed and wrote our first short film - and we've never stopped since."

Francesca and Hayley's films have been shown at festivals around the world and have featured Youtube GLOBAL.

"My tourettes serves as a positive aspect of my life, something I have learnt from, and something that I am not ashamed of. I will not let it stand in the way of showing the world what I have to say."

Paul was diagnosed with TS aged 25 after ‘a lifetime of tics’. Now in his 30s, he is has just become a father and works as a One to One Support Worker and Music Teacher .

 “Tourette’s is regarded as ‘that thing where they swear all the time’. I get annoyed when programmes sensationalise that particular symptom (coprolalia) and create a stereotype. I have total respect and feel great empathy for people with coprolalia, but feel compelled to speak up for those of us that don’t.

"People laugh when I say I have Tourette’s and tell me that I can’t have it - because I’m not like the people on the telly.”

For more on Paul and to listen to some of his songs, visit www.myspace.com/paulstanworth