When most people hear about Tourette Syndrome (TS) it is often in reference to someone who intermittently swears for no apparent reason.
But only a very small percentage of people with TS swear in this way, said Barb Charboneau, who has lived with TS all of her life.
“My earliest recollection that something was wrong was when I was 11,” Charboneau said.
But it would be years before she would be diagnosed with TS and even longer before receiving the right medication to ease her symptoms.
“Last year I was put on medication for the first time which has been life changing for me,” said Charboneau.
Charboneau lives in Williams Lake and is the newest affiliate with Tourette Canada, the national network in support of people who are living with TS.
She is available to help people understand TS, answer their questions, share and discuss concerns and help with referrals for available treatment options.
“I joined Tourette Canada with the hope of helping others recognize their worth and abilities despite their disability and the challenges TS-plus, can present,” Charboneau said. “A full life can still be achieved.”
TS is described as a neurodevelopment condition that causes involuntary sounds and movements called tics. It is sometimes passed from parent to child.
Some common types of tics are shoulder shrugs, head jerking and neck cracking, making faces, eye blinking, wincing, throat clearing, looking nervous, and making odd noises, Charboneau said.
She said many people with TS also have comorbid disorders such as attention deficit hyperactivity disorder (ADHD), obsessive compulsive disorder (OCD), and anxiety disorders.
When she was 15, Charboneau’s tics and periodic rages became so challenging that she was referred to a psychiatrist. The psychiatrist diagnosed her as a nervous teenager and put her on anxiety medication.
“My reaction to the medication was convulsions so I stopped taking it,” Charboneau said.
Fortunately she was never subjected to bullying because of her tics which included making a clicking sound with her mouth, jerking her head, one eye that blinked, and involuntary flexing of her rib cage and one hip.
“My tics were just part of my character,” Charboneau said.
After high school Charboneau worked as the surgical booking clerk for a trauma team in Vancouver. One of the surgeons she worked with referred her to a neurosurgeon for assessment.
In turn the neurosurgeon referred her to an expert in motion disorders.
From there she was included in a trial for an experimental drug. The drug helped to ease her symptoms somewhat but not enough for her to continue paying $800 every three months for the treatment once the trial had ended.
While she was able to control her tics for short periods of time, the urge would prevail and the tics would start again stronger than ever.
“Tics are physically exhausting,” Charboneau said. “In my case the tics are exacerbated by stress, lack of sleep, and when I am not eating right.”
Having grown up on the coast Charboneau visited the Cariboo frequently and moved to Williams Lake in 2010.
In 2014 her TS symptoms became more pronounced and painful with the onset of menopause so she went to her family doctor for help.
Her doctor referred her to a psychiatrist who visits Williams Lake regularly.
“The medication he prescribed made a difference instantly,” Charboneau said. “It was absolutely amazing. I still tic occasionally now, but the horrible neck pain I had lived with for years is gone. I am calm now. I was never calm before, never at peace.”
Charboneau won’t talk about the medication she takes because she said every case of TS is different and people should work with a specialist to find the treatment that is right for them.
“I was fortunate to find someone who knew what I needed,” Charboneau said. “If I hadn’t been living in this small town I might never have found it. The doctor said he wished he had met me 25 years earlier because I have gone through so much unnecessary suffering.”
Charboneau is now taking courses through TRU in Kamloops toward earning a degree in counselling psychology.
“I have returned to school to pursue a degree, something that before would not have been possible,” Charboneau said.
Tourette Canada has been active in Canada for 40 years and estimates that one in 100 people is living with TS.
It is more common among males than females.
Fortunately Charboneau said some people stop having symptoms by about age 21.
There is currently no cure for TS and treatment is usually in the form of medication to help manage symptoms.
“In my life, I never let TS stop me from living life and I was fortunate to have friends and family accept me with all of my flaws and imperfections.
There is help and support available for people who suffer from TS,” said Charboneau who can be reached by email at williamslake@tourette.ca.
More information is available from Tourette Canada at www.tourette.ca.