For most people, eating out is a pleasure, but until recently for Tom Dufton this, like many social outings, often became an experience to be endured rather than enjoyed.
It’s not that Tom, 36, who runs his own horticulture business, isn’t sociable (he is), it was the reaction of others that made the experience so uncomfortable.
Since the age of six, Tom has lived with Tourette syndrome, a neurological disease that affects around 300,000 people in the UK, according to the charity Tourettes Action, and which causes them to make sounds or movements – known as tics – about which they have no control.
Tom Dufton, pictured with his wife Emily and son Henry, received a boost of confidence after treatment.
In Tom’s case, these tics have changed over the years: from blinking or clicking his jaw to growling and, at one point, randomly kicking his leg. Five years ago, he became a near-constant spitter.
“Of all the tics I’ve had, this has been the longest and hardest to deal with,” says Tom, who lives near Truro, Cornwall, with his wife, Emily, 32, who works in human resources, and his young son, Enrique.
‘I absolutely hated it. He made me feel very self-conscious. I would see people looking at me and thinking, “Why is he doing that?” He wanted to scream, “I can’t help it!”
“I wouldn’t go to the theater or the cinema; it’s so quiet there that everyone would have heard me, which would have been embarrassing,” says Tom.
But now he can, because in March he underwent a five-hour operation to place two electrodes in his brain, in a procedure known as deep brain stimulation (DBS). These electrodes send electrical impulses that calm the activity in the part of your brain that is believed to trigger the symptoms.
There was no guarantee it would work (the procedure was part of a test to see who would benefit) and the risks were considerable. “I was warned it could cause a stroke, personality changes, infections and death,” says Tom. But the bet seems to have paid off and the operation “changed his life.”
He says: ‘I’ve pretty much stopped spitting, as have my other tics (like making noises while talking and occasional twitching movements) and I can’t explain how important that is. It’s made a big difference to my confidence and I’m already getting out more.
“The other day I went to a quiz in a pub, which before would have been very awkward.”
Tourette syndrome, four times more common in boys than girls, usually begins around age seven, “but a small number develop it in adulthood,” says Eileen Joyce, professor of neuropsychiatry at University College London. She says about 60 percent of children outgrow it, but it can become a serious problem for the rest.
Singer Lewis Capaldi said his 2022 diagnosis was a relief, as he feared his symptoms – his left shoulder jerked repeatedly and his head moved – could be due to “a degenerative disease”.
For a small proportion of patients, the tics are so severe that they can harm themselves, says Professor Patricia Limousin, a neurologist at the National Hospital for Neurology and Neurosurgery in London, who is leading the trial Tom is taking part in.
“I’ve seen people whose tic causes them to repeatedly shake their neck and they end up with arthritis,” he says.
“I’ve even known it to damage the spinal cord and cause paralysis; it’s rare, but some patients need a wheelchair as a result.”
While Tourette syndrome is often associated with an uncontrollable urge to swear (known as coprolalia), in fact, fewer than 10 percent of those affected do so.
“It’s not just bad language, it’s insulting words,” explains Professor Joyce. Tourette syndrome is thought to be caused by overactivity in a communication circuit that runs between areas of the brain that control movement.
‘People with Tourette syndrome appear to have fewer inhibitory interneurons than normal. “These are nerve cells that control the activity of other nerve cells in the brain that control movement,” says Stephen Jackson, professor of cognitive neuroscience at the University of Nottingham.
“Without these inhibitory cells, the neural pathways in this region activate spontaneously and are not under a normal level of control.”
It is not clear why these inhibitory cells are missing. It may be genetic (Tourette syndrome has a genetic element), but “another possibility is inflammation,” adds Professor Jackson.
Tics are thought to begin in childhood (when the brain begins to develop) and diminish in some cases after the age of 18, “possibly because as the brain matures, it adapts to the abnormality,” says Professor Joyce.
The impact of Tourette syndrome can extend beyond tics.
“Those affected are often bullied or excluded from school,” says Professor Jackson. “People have been thrown out of buses, restaurants or cinemas… and there is a risk of suicide.”
Professor Joyce says that when it comes to treatments, the best current evidence is for antipsychotics (such as haloperidol and pimozide), but given at much lower doses than in psychosis.
“They work by blocking the transmission of a brain chemical (which sends messages between cells in the hyperactive area of the brain) involved in the production of tics,” he explains.
However, they do not work for everyone and can cause severe fatigue and/or restlessness, which some find intolerable.
In March, Dufton underwent a five-hour operation to place two electrodes in his brain, in a procedure known as deep brain stimulation (file image).
Tom has been prescribed numerous antipsychotics over the years. In addition to causing side effects like sweating, they didn’t stop the tics completely, but rather “mitigated them a little.” However, he adds: “Without them, he wouldn’t be able to stop moving or ticking.” Tom was also taking medication for the anxiety and depression caused by his condition, and for the obsessive-compulsive disorder and ADHD that commonly coexist with Tourette syndrome. Doctors had warned him that taking so many pills risked damaging his kidneys.
Tom learned about the trial earlier this year from one of his specialists, who said his age and the severity of his tics made him eligible. Furthermore, his fatherhood provided an additional incentive.
“Henry is a factor behind me moving forward with this as I want to be in the best position possible as a father,” he says.
“I was worried about holding him in case he experienced a tic that caused a twitching movement, and I didn’t want him to have to worry about me having Tourette syndrome.”
Having discussed the risks with Emily, Tom decided to go ahead with the operation.
The electrodes in your brain measure 1.5 mm in diameter and emit a constant electrical impulse. They are controlled by a pacemaker in your chest (connected by wires running through your neck) and can be raised or lowered remotely by the patient or doctor to suppress symptoms.
“It is the same treatment used for Parkinson’s and essential tremors, but in this case the electrodes are placed in a different part of the brain,” says Professor Limousin.
Tom has been prescribed numerous antipsychotics over the years. In addition to causing side effects like sweating, he didn’t stop the tics completely, but rather “mitigated them a little.”
‘Previous trials showed some benefits in severe Tourette syndrome, but also variability in response to treatment; “We are trying to get more evidence and understanding of the factors that affect this.”
A review of studies, published in 2019 in the journal Neuropsychiatric Disease, found that deep brain stimulation reduced Tourette symptoms by 40 percent on average.
But the procedure is only suitable for the most serious cases (about 5 percent of cases) because the risks are too great for others.
There are new, less intrusive treatments in the pipeline. Professor Jackson is part of a team that developed a watch-like device, called Neupulse, which has been tested by Lewis Capaldi.
When worn on the wrist, it emits electrical pulses that stimulate the median nerve, which runs from the wrist to the cortical areas of the brain. These areas are thought to be more sensitive in people with Tourette syndrome.
A trial involving 121 people who used it five days a week for a month found that it reduced the severity of tics by about 35 percent, according to a March 2023 Journal of Neuropsychology report.
The device, which is expected to be in production in 2026 and cost between £300 and £400, is being reviewed by the National Institute for Health and Care Excellence (NICE) to see if it can be made available on the NHS. .
Tom will undergo regular monthly check-ups to ensure the level of stimulation is right for him, but he is “quietly hopeful” that his life has changed forever.
“The other day I was on the phone with my mom and she was really overwhelmed because I was talking without making noises or spitting,” he says. “I can’t believe how big a difference it has been.”