“I remember being on a train journey when a very smartly dressed gentleman entered the carriage. He had on a suit and tie, was carrying a briefcase, and all of a sudden he started saying 'fuck, fuck, fuck, fuck . . .' “I thought to myself, I’ve got to go. I’m going to catch this. I could feel myself wanting to do the same thing,” says Tim Usherwood, Professor of General Practice at Westmead Clinical School.
Usherwood’s travelling companion had Tourette Syndrome, something he was able to easily recognise because it is a condition that he shares. However, unlike the dapper man, Usherwood has never suffered from coprolalia - the uncontrolled use of scatological words – and didn’t want to become ‘infected’.
“Interestingly, with Tourette’s, you can catch tics. As a child, my father once made a face at me, wrinkling up his nose, and I copied him. Once you have developed a tic it can last months, sometimes years.”
Typical of Tourette’s, which develops in early to mid-childhood, Usherwood has lived with the syndrome since he was seven or eight years of age. “Once you have it, it tends to persist throughout adult life. The features vary over time, with some tics disappearing and new ones replacing them.” He’s now 58 and, even though the tics have become less marked in the past 10-15 years, he still has them.
Usherwood’s first memory of the condition is sitting in his school classroom and grunting. “The feeling is a bit like a sneeze. You can suppress it for a while but in the end you have to do it. When you are on your own, it’s easier just to do it. I would be grunting 30 . . . 40 . . . 50 times a day and wrinkling my nose with similar frequency.” “I didn’t like it growing up because I didn’t understand it. It used to annoy my school mates, especially as exams would exacerbate the grunting, and I was known as ‘Twitch’.
“When I first developed the tics, my parents took me to the family doctor. At the time, Tourette’s was seen as a psychiatric illness and I was shunted off to see a psychotherapist. I learnt about a lot of things, including sex, but the sessions did nothing for my tics.
“When I got to uni, I spoke with a professor of psychiatry about it and by this time, Tourette’s was recognised as a neurological disorder. It’s interesting to see how the framing of the condition changed around my teens. It’s been the same with schizophrenia, which was viewed as a psychodynamic problem and is now understood as due to abnormalities of brain function. And now we are beginning to understand the biological underpinning of depression and anxiety. Anyway, he suggested behavioural modifications which were no help, and a drug called haloperidol which just made things worse”.
“In the end, I just decided it’s part of who I am and I live with it. I happen to be six foot tall, I happen to have blue eyes and I happen to have Tourette’s. I’ve found that approach enormously helpful.
"The experience of living with a chronic health problem that is fairly obvious to other people has also taught me valuable lessons for my development as a clinician."
“The experience of living with a chronic health problem that is fairly obvious to other people has also taught me valuable lessons for my development as a clinician. It has highlighted to me that patients are far more than a ‘case of diabetes’ or whatever, and often have an interesting story about their illness experiences and how they have responded to them. Understanding this background can be of considerable value when developing a management plan with a patient.”
Usherwood says that the condition is exacerbated in situations that cause anxiety, such as giving presentations, examinations and social functions.
“If it’s a bit obvious when I’m with someone, I might mention that I have it. When I tell people, they sometimes reply, ‘I thought you probably did.’ Awareness of the condition has certainly increased, especially with the writings of Oliver Sacks. He talks about one fellow called Witty Ticcy Ray who has an intolerance to light touch. I realised that I have that, too. I hate wearing a watch and haven’t for many years. I don’t like things lightly touching and caressing my skin.”
Just as there are times when the tics are worse, Usherwood has found that situations of intense concentration can be virtually tic-free. “I used to be a serious rock climber and did it quite well. I would have no problems with tics while balancing my way on a cliff face. At the end of the climb, if it was really challenging, I’d spend time releasing all the tics from my body that I hadn’t even been aware of while climbing. I also do some minor surgery in my practice, such as taking out skin cancers, and there are no problems there either.”
Tourette’s can be associated with ADHD and OCD, and though Usherwood says he has neither, he does own up to being slightly obsessive, something which he feels is not a bad thing in clinical practice, saying that it’s good to double check details. “My kids tease me, asking if I’ve remembered to turn the iron off when I’m leaving home. And I’ll go and check the iron, even if I hadn’t turned it on in the first place, just to be sure it hasn’t somehow turned itself on!”
Tim Usherwood spoke about living with the condition at the Tourette Syndrome Association of Australia’s annual conference in May. He wants to share his experience with children who have Tourette’s, and their parents, believing that accepting the condition as part of oneself is key to reducing its impact.