For nearly all of his 31 years, Jeff Matovic lived his life in a body out of control.
Talking was often painfully difficult for him, and simple movements nearly impossible. His greatest wish was a simple one.
"It would just be really nice to be still for, you know, a period of time," Matovic said.
The quiet peace of sitting still was an unknown dream for Matovic, who has Tourette syndrome, a disorder that affects 100,000 Americans, according to the National Tourette Syndrome Association.
Many people think of Tourette patients as people who uncontrollably sputter out obscene language. But that particular symptom of the disease, known as coprolalia, only affects 15 percent of Tourette patients, and Matovic is not among them.
"Tourette syndrome is a disorder of tics," said Dr. Brian Maddux, a neurologist from the University Hospitals of Cleveland. "There's usually several such movements — including the production of sound — so somebody may grunt, or cough or sniff, sometimes actually say words."
For Matovic, just trying to say the simple sentence, "It's a sunny day in Cleveland, Ohio," would send him into a fit of flailing and grunting in an effort to get the words out. When he was asked to put his arms out in front of him, it seemed an impossible task. But that was before.
Thanks to an experimental surgery, Matovic's once uncontrollable body is now controlled to the point that he can operate a computer, play video games and even challenge his stepchildren to a game of basketball at their home in Lyndhurst, a suburb of Cleveland.
"My outlook on life in general is truly — the sky's the limit now," said Matovic, who, along with his doctors, spoke exclusively to Good Morning America.
Jeff Matovic first showed symptoms of Tourette syndrome when he was just 3 years old. Pictures showing the little boy smiling belie the fact that his childhood was often frustrating and lonely. "I wondered, why do I have to be home ticking, lying in bed, trying to calm myself when everyone else is out having fun?"
Having fun wasn't his only challenge. Matovic's tics made finishing high school and college relentlessly difficult.
"I mean, can you imagine trying to read something and you're constantly doing this?" he said, arms moving. "And your eyes are fluttering and you're losing your place every two seconds."
Much Trial and Error
He tried medication after medication, and they all helped control his movements — but only for a while.
His wife, Debra, says she watched her husband's abilities to move and accomplish day-to-day activities disintegrate.
"Over the past year, when the medication stopped working — Jeff, he just stopped being able to do almost anything," she said.
By last year, no pill was working. Jeff Matovic could not hold a glass without breaking it, he couldn't work, he couldn't play with his stepchildren and he described every day as sheer torture.
"And when it came to the kids — oh, man — it tore my heart out, because it couldn't be," Debra said, starting to cry. "He couldn't go out and play basketball. He couldn't."
With no options left, Matovic began doing research on a procedure called deep brain stimulation, or DBS.
It involves having two electrodes placed in the brain and attached to a sort of pacemaker for several years. The procedure has been used to control the symptoms of patients with tremors, Parkinson's disease and other movement disorders.