GRAND FALLS-WINDSOR, NL – Tara Bannister of Grand Falls-Windsor grew up with what she was told were “bad habits.”
Neither she nor her family had any idea her habits were symptoms of Tourette syndrome (TS), a neuro-developmental disorder that causes people to make involuntary sounds and movements called tics.
“I started getting tics at about the same time I got glasses. We thought it was because of the glasses,” Bannister said during a recent phone interview.
Bannister’s son Ben, who is now 12, was diagnosed with TS four years ago. She suspects her seven-year-old son Mitchell may also have TS.
“When Benjamin started developing tics I thought he was just picking up on it because he saw me doing it,” Bannister said.
TS is both embarrassing and painful, Bannister said.
“People are staring at you, but you can’t help what you are doing. It’s like trying to hold in a sneeze. Your body just has to do it. And the more you try to fight it, the stronger (the tic) becomes,” she said.
Tics come and go over time and can vary in type, frequency, location and severity.
As for pain associated with tics, Bannister said, her son had a tic where he’d violently snap his head forward and then back.
“He would cry all the time because it hurt so bad. He thought he was going to break his neck. And he had a tic a couple of weeks ago, where his eyes would roll up into his head and his head would shake back and forth at the same time. He had really bad headaches.
“He went for two weeks where he could barely see anything.”
Bannister also knows all too well how painful tics can be.
“I have this one (tic) where if I’m walking and if I don’t hold on to anything like a shopping cart or a stroller or somebody’s hand ... my left shoulder and left elbow will pop out of joint. And that’s painful,” she said.
Bannister said TS is stigmatized because of coprolalia, the involuntary utterance of obscenities, profanities and derogatory remarks.
However, she said, most people with TS do not have that particular tic.
According to Tourette Canada’s website, it is a common misconception that the main symptom of TS is swearing. And, while up to 10 per cent of people with TS may experience coprolalia at some point, the website notes that, as with all tics, the behaviour is not intentional.
Bannister said when Benjamin was diagnosed with TS, it came as a relief to the child.
“He was so happy that he finally had an answer to everything that he was doing,” she said.
Benjamin, who also has dyslexia, doesn’t let anything hold him back, his mother said. He has a 90 per cent average in school and is assistant captain of his pee wee hockey team.
Bannister said while her son was relieved with the TS diagnosis, she and her husband had no idea where to turn for support.
“We were completely lost,” she said.
Bannister turned to the internet to learn more about the syndrome and is now looking to establish a support group for anyone in central Newfoundland who has TS.
She explains on the Facebook page “Tourette Syndrome Support, in Central Newfoundland and Labrador” that the group’s main purpose is to ask questions, get answers, and have somewhere to go where people understand each other.
“I want people to feel included and to know they are not alone,” she said.
Bannister is also organizing a Trek for Tourette in March 2018 during TS Awareness Month.
Bannister believes many people have TS but have not been diagnosed. She is hoping that by telling her family’s story, people will understand more about the syndrome.
“We are hoping that by raising awareness, that Tourette’s will be an accepted disorder in our society, rather than a taboo one,” she said.
About Tourette syndrome
Tourette Canada (www.tourette.ca) describes tics as sudden, intermittent, repetitive, unpredictable, purposeless, non-rhythmic, involuntary movements or sounds.
Tics that produce movement are called motor tics, while those that produce sound are called vocal or phonic tics. Tics can be either simple or complex, and may include eye blinking, facial grimacing, sniffing, coughing, throat-clearing, shoulder shrugging and head jerking.
Complex tics include such things as touching objects, jumping, or spinning around.