Tourette Syndrome: Berwick man missed children's plays and detained by armed airport police due to condition

The 59-year-old father-of-four from Berwick is sharing his experience to mark Tourette’s Awareness Month and support Tourettes Action’s online It’s What Makes Me Tic campaign.

Paul said: “I tend not to go to social events. Pubs and cinemas are a no go.

“It has been most difficult having to miss sports days or watching my kids in plays.

“There have been a lot of proud moments that I have not been able to enjoy.”

Paul is among 10% of the 300,000 people in the UK with Tourette’s that experience involuntary outbursts of inappropriate remarks, and it frequently issues.

He said: “I was assaulted on a train by a group of men on a stag do when I was ticcing, but one of the worst experiences was at an airport in Italy.

“I was invited by Tourette’s Italia to fly over for interviews and I knew I would shout ‘bomb’ at the airport, so I hired assistance to help me out.

“The plane ride there went smoothly but at the airport I was pulled into a room with five armed guards all shouting at me, and they could not understand what I was trying to explain to them. They were just doing their job but it was an incredibly tense situation.”

Tourette Syndrome is commonly misunderstood as just swearing, but motor tics can cause secondary disabilities for Paul.

He said: “I have hit myself over the head with pans, touched hot stoves, and I cannot use sharp knives because I will tic and stab myself with them.

“I have violent tics where my knees give way and pop out of their joints, and others where I throw my arms up so fast that my shoulders come out of their sockets.

“I have had six operations on my left knee and two on my right, and I cannot have a knee replacement because I fall a lot so I wear leg braces to support them now.”

Although Paul has experienced physical tics throughout his life, they were simply labelled “bad behaviour” as a child and he was not diagnosed with Tourette’s until, aged 46, the death of a close friend escalated the condition.

He said: “I remember making phonic noises and twitching my shoulders at the funeral. I put it down to grief but they kept getting worse.

“I have a religious family who were praying like mad for me because they were scared I was possessed.”

In Paul’s view, the idea that Tourette’s is rare is the “biggest misconception” about the condition, and it is preventing people from accessing support.

He said: “For all the people who seek a diagnosis there are even more like me who are not aware they have it, and while it is classed as rare by the NHS there is no support available.

“One of the biggest challenges I faced was coming to terms with having Tourette’s and I want people out there living with the condition to have the support I did not have.

“Anyone with Tourette’s out there should know: you are not broken, you do not need fixing, and you still have a future.

“Do not let it stop you from pursuing your dreams.”