Terry Simpson's Got Tourette's Syndrome

by Shelley White
^{(creative writers at www.morewriting.co.uk)}
Hi. My name's Terry Simpson. The doctor said I've got Tourette's Syndrome. It's a neurological disorder. Dad passed on the gene to me - thanks Dad!

It started off with my mouth and nose twitching and my eyes blinking really fast. Sometimes my legs and arms twitch or I have to keep clearing my throat or sniffing. I may grunt like a pig, cough or bark. The doctor told me these symptoms are called simple tics or involuntary movements.

Other times, though, I even frighten myself ... I can start nodding or jerking my head, jumping or twirling about - these are called complex tics - or repeating words out of context - that's called echolalia. I occasionally get into a bad temper and shout out. But the symptom most people associate with TS is coprolalia - that's when you can't help repeating rude or unpleasant words or swearing. I'm glad I don't do that - my Mum doesn't like swearing. Thankfully, copralia only affects about a tenth of us sufferers and they're not usually children.

Before I got diagnosed with TS my life was miserable. My Mum and Dad understood I couldn't help my behaviour but some of my friends and teachers thought I did it on purpose. Sometimes the teacher made me sit at the back of the class so I didn't disturb the others - and once I had to sit in another classroom on my own till the lesson had finished. This made me feel rejected, angry and frustrated and sometimes these feelings make my tics worse.

It's difficult to describe what it feels like to have TS. I try so hard to control or stop my noises or twitches but it takes a great effort and wears me out physically and mentally. It's a bit like having a terrible itch that you're not allowed to scratch - but this itch goes on for an hour! Imagine trying not to scratch it. Could you manage it?

I know that occasionally the things I say and the way I act overwhelms people. Some of my 'so-called' friends mimic me, tease me or even threaten me. They call me names like 'Blinko' or 'Tic Toc'. They don't want to be friends with a 'nutter' so they don't invite me for tea at their houses. I often watch them playing football in the school yard and wish they'd let me play too. Perhaps the ignorant ones think TS is contagious! I'm sure I could score a goal - well, I do when I play with Dad in the park. I don't want to be the odd one out or be on my own all the time.

I never thought I'd be saying this but some of the rejection and misunderstanding from others has had one good effect - when I've been on my own at home I've taught myself to play the guitar. It's an old one of my Dad's but still works. I've been playing along with songs on the pop channels on TV. Dad says I've picked it up well and sound really good - there again, he's my Dad so he's bound to be biased. I've also been allowed to join the school band. I haven't played in a concert yet but I'm hoping I'll get a go at Christmas. It's made me feel part of the school community plus I've learned so much about music.

When I feel a bit down, I wonder why it had to be me - why have I got TS and not any of my friends? Researchers say one in a hundred people has TS so I suppose in a way I'm rather special - well, that's what Mum says when she's trying to cheer me up. No one knows the exact cause of the symptoms in TS, but experts believe that it's to do with chemicals such as dopamine not working properly in a small area of the brain.

It took a while for a diagnosis to be made, though it's not the same in all cases. My doctor referred me to a specialist. He confirmed TS by observing my pattern of symptoms - and of course he had been informed that my Dad had it too. I know there's no cure for it as yet, but it can certainly be treated. Most of us with TS don't need medication but some of us whose symptoms are making life difficult can control them with medication.

Just because we've got TS doesn't mean we're stupid or disabled - children with TS have the same IQ range as other children. I go to a mainstream school and get extra educational assistance. I have trouble sometimes with reading and writing and I get extra help from an assistant in the classroom.

There's a girl I know called Amy who has more symptoms than me. She goes to a special school and gets psychotherapy or behavioural therapy. For example, she's been aided to substitute one tic for another that's more acceptable. She's also learned that she can lessen her tics by concentrating on doing a really interesting task that takes up all her attention.

We're both learning how to relax more with relaxation therapy. Relaxing helps us to stay calm so we don't get stressed, which can often make our tics worse. When I feel that I'm getting a bit worked-up, I try to remember what I've been taught about breathing deeply and then I usually feel a lot calmer.

Oh yes, I mustn't forget to tell you about the associations that provide advice and support for people with TS and their families. They bring sufferers together so we can share information and make people aware about the condition. There are telephone help lines too - you may find them in the phone book, or you may have to call directory enquiries or check them out on the net. The people are kind and put you at your ease. They don't think you're mad or make you feel like a freak.

In case you're wondering where TS got its name - it's named after the French neurologist Dr Georges Gilles de la Tourette. He documented several cases of TS in 1875.

I was listening with my ear to the door when the doctor told Mum and Dad that I should have a normal life span. That's reassuring because I was worrying a bit about that. I also know that with medication I can lead as regular a life as anybody else - after all, my Dad has. There's also a good chance that symptoms may ease off as you get older. There may be no known cure at the moment but research is continuing. Dad went to university and is an engineer so you can overcome your TS - my Dad is proof of that.