PMZ music sessions with young people living with Tourette's syndrome.

What's it really like to live with Tourette's syndrome? From being bullied to "hilarious" incidents, Plymouth sufferers tell all

By Plymouth Herald | Posted: December 31, 2014

By SIAN DAVIES Health Reporter @SDaviesHerald •

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Kirsty May

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Alex Paton •

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“PUTTING 12 people in a room with Tourette’s is absolutely hilarious,” 20-year-old Kirsty May says from a comfy sofa.

“When you twitch all together we just laugh at each other. We set each other off.”

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Kirsty, from Mutley, was diagnosed with the neurological condition at the age of six but it took until February 2014 for her to meet someone else with Tourette’s.

It wasn’t until a support group for people with the condition, which is stereotypically known for causing sufferers to twitch or blurt out swear words, was set up in Plymouth this year that her life begin to change.

The first person she met was Alex Paton, from Southway. At 41, this was the first time he had met anyone with the condition too.

Group leader Helen Fellows explained: “Kirsty is part of Colebrook services Opportunity Knocks project, and she told her support worker she would like to meet someone else with Tourette’s because she had never met anyone with the condition.

“We put calls out and were introduced to Alex in February. Through Facebook and other means we now have 12 members.”

When Kirsty was diagnosed doctors thought she had Asperger’s syndrome, and Alex was told his symptoms were just a habit.

“I had never met anyone with Tourette’s and wanted to see how other people coped with it and what other people went through,” Kirsty said.

The involuntary movements – called tics – can happen at any time , and often get worse if the person is nervous or stressed.

Kirsty said. “It’s like a cough or a sneeze and you can’t stop it – it’s like trying to keep your eyes open when you sneeze.

“I have shouted on a bus before. It’s not all about swearing – only 10 per cent of Tourette’s sufferers swear.

“If you have got a muscular tic it can be really tiring and painful. I have got bruises all over.

“Recently I have started coughing with my throat and spitting.

“I thought I was the only person going through it. It helps to be able to pick up the phone and say you’re having a bad day and they understand.”

Helen explained: “Some tics you can mask but some you can’t. It’s like shaking a bottle of coke, you’re keeping it all in. All of a sudden you release the pressure and the tic is bigger.

“They can be worse if a person with Tourette’s is nervous or stressed, maybe when they meet new people.

“Some of the stuff can come out as offensive and land you in a lot of trouble. People can be quick to turn around and thump you rather than ask questions. It puts you in a dangerous position. It can make you extremely vulnerable .”

Helen also explained there can be huge differences in the care sufferers receive.

“Kirsty used to see a consultant in London every six months,” Helen said.

“There’s a lot of disparity between care, it depends if their GP understands the condition and the diagnosis process can be long and frustrating.

“It is rare for Tourette’s to be a stand alone condition, and is often associated with ADHD.” Alex was not diagnosed until his late teens, and said he suffered bullying as people didn’t understand the condition.

“As you get older you can control it more,” Alex said. “At 14 I got told it was habit, I didn’t get diagnosed until I was 18. I was bullied. I didn’t have a clue what it was. The best way I can describe it is like a pressure cooker.

“While I came across bullying when I was younger, now I will explain to people and they understand.

“There are a lot of ignorant people, it’s all about getting the awareness out to them.”

In an attempt to get their message across, the group has written and recorded a song and are hoping to release it as a single early in the new year.

Spending 10 weeks composing and recording at Plymouth Music Zone, Alex, who plays guitar and is on lead vocals, said the experience has been “a buzz”.

Helen said: “The song came about because we were talking about what the group could do and I challenged them to come up with the lyrics for a song.

“They used their experiences of having Tourette’s and how it makes them who they are.

“Music is one of the ways people with Tourette’s can relax and communicate – they are all really enjoying it.”

Amazingly, the lyrics for the song were written by Jacob, who at 14 is one of the group’s youngest members.

His mum Vicky, 46, from Stoke has found the group to be a great support, giving Jacob new best friends who know what he is going through.

Vicky said: “Jacob was diagnosed aged nine but we had raised concerns since he was 18 months old.

“He has other conditions other than Tourette’s which are quite common – they thought he was autistic, and he is on the spectrum, but I ended up telling them he had Tourette’s which led to him being diagnosed.

Since he joined the group he has changed. It helps to have people who understand what he is going through - I don’t know what he’s going through, I can’t possibly know – but they do. If he’s feeling down he will ring one of the guys and have a chat.

“Jacob’s tics change – first he was clearing his throat and I thought it was just a habit, some times he has verbal tics and sometimes physical.”

Vicky explains that some medications can cause stiffness or jerky movements, so can actually make things worse. The group agree that treatment is a case of trial and error to find out what works for them.

Run by Colebrook (SW) Ltd and funded as part of a National Lottery Reaching Communities project , the support group is already helping people with Tourette’s feel more confident.

“Of the group of 12 none have exactly the same tics each time and the time and regularity of tics can be different,” Helen said.

“It’s a safe, comfortable environment. Whatever comes out of people’s mouths it doesn’t matter.

“We will be doing more next year and are putting together some information for people – each person in the group has their own story and we want to work with them to get their message out. Tourette’s doesn’t stop you leading a full and functioning life.

Kirsty added: “We want the group to carry on and more people to join. We all go out for meals and into town - its a real friendship.”

The group meets the first Thursday of every month, and the carers group meets the third Thursday of every month. For more information or to get involved, call Helen Fellows on 01752 205210.

WHAT IS TOURETTE'S? Tourette’s syndrome is a neurological condition which is characterised by involuntary movements and noises known as tics.

It’s not known what causes the condition, but it is thought to be linked to problems with a part of the brain known as the basal ganglia, which helps regulate body movements.

In people with Tourette’s syndrome, the basal ganglia 'misfire', resulting in the characteristic tics.

Tics can include involuntary sounds such as coughing, grunting, shouting out words or full sentences.

They can also involve movements such as jerking the head or jumping up and down.

The syndrome usually starts during childhood – in many cases it runs in families and it is often associated with obsessive compulsive disorder (OCD) or attention deficit hyperactivity disorder (ADHD).

There is no cure for Tourette’s, but behavioural therapy can help control the tics.

WHO WE ARE Looking on showing a smile through each day it’s all worth while.

Through each day we are different to you but is it right it’s not true BRIDGE We will help you understand this is what we live with, let us stand hand in hand ‘cause we are strong.

A tic and a movement but we get through, a verbal exchange between us and you.

No offence, it’s not our fault. It is tough and it is hard.

CHORUS Please understand this, it’s the day we live with.

Ignorance is not the way, this is our reality.

We will help you understand this is what we live with, let us stand hand in hand ‘cause we our strong Ignorance us not the way, this is our reality.

Let us stand hand in hand ‘cause we are strong.

We are what we are so please understand this, let’s stand together as, one let’s all embrace this.

‘Cause this is who we are ‘Cause this is who we are ‘Cause this is who we are ‘Cause this is who we are

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