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Tourette Syndrome Kept Couple From Holding Hands - Until Now
By SYDNEY LUPKIN
After 13 years of marriage, this will be the first Valentine’s Day that Andrew and Amy Joannou will be able to hold hands and go for a walk.
Andrew Joannou, 46, has Tourette’s syndrome, a neurological disorder characterized by involuntary vocal and physical tics. His tics included punching himself in the head and swearing uncontrollably, but Amy Joannou never minds them. On their first date, for instance, a tic made him throw his fork, so she quietly passed her fork across the table.
Still, the tics made holding hands dangerous.
“When we walked hand-in-hand, he would have a stumbling tic, and he would pretty much yank my arm,” said Amy Joannou, 39, of Stratford, N.J. “There were times when we would both almost stumble to the ground.”
Amy Joannou used to wrap her arm around his waist and hold onto his belt loop to keep him from falling when they walked together, but it wasn’t the same.
“When you’re holding hands, I want to say it’s as if you’re one person,” Amy Joannou said. “You’re connected, and … I can feel his heartbeat in my hand.”
Andrew Joannou was one of the estimated 200,000 Americans with a severe form of Tourette’s syndrome, according to the National Institutes of Health, and Amy Joannou loved him anyway.
After four decades of steadily worsening symptoms, Andrew Joannou decided to undergo a surgery that would change his life: deep brain stimulation.
“When it is successful, it is not uncommon to have near miraculous results,” said Dr. Brian Kopell, who runs Mount Sinai Hospital’s Center for Neuromodulation in New York City.
Kopell has performed 600 to 700 deep brain stimulation operations in his career. The surgery is usually for patients with Parkinson’s disease and other movement disorders, but he’s done it for a handful of patients with Tourette’s syndrome, he said.
Kopell and his team implanted a pacemaker-like device deep into Andrew Joannou’s brain to stop the tics. It took three surgeries to implant the electrodes and the battery, but in September, the doctors were finally ready to turn it on and see if it worked.
Anderw Joannou’s more extreme tics ceased instantly.
“It was awesome,” Andrew Joannou said. “I was physically able to sit still and physically able to walk and be quiet.”
Amy Joannou wasn’t with her husband that day at the hospital, but she met him at home.
“He walked down the stairs, grabbed my hand, and we went for a walk,” Amy Joannou said. “It was as if we were dating again.”
“She cried,” Andrew Joannou said. “We went for a walk that same day.”