"It is like a straitjacket" : Tallahassee Man Describes Life with Dystonia

By Julie Montanaro
February 12, 2016

Imagine you're 15 years old … in high school, playing basketball, plenty of friends, anxious to get your driver’s license ... and suddenly your life takes a terrifying turn.

Brian Jackson started noticing he couldn't write his name and had trouble picking up his fork at the dinner table. Within six months he was in a wheelchair desperate for answers and relief.

Brian Jackson wasn't sure he'd ever walk again.

At just 15 years old, he started experiencing excruciating back pain and his spine started to curve and not even some of the best doctors could figure out why.

"My muscles were contracting all the time,” Jackson said. "The best way I can describe it is like a straitjacket ... that you're kind of just like locked in."

Brian and his parents spent more than six months trying to get a diagnosis. Scoliosis was the most mentioned, but they didn't believe scoliosis could force their son into a wheelchair within six months.

The diagnosis they finally did get? Dystonia.

"Most people have never heard of it," his mother Stefanie Jackson said. "Sometimes you’ll hear … there’s a joke … Someone would say ‘Is that like a country in Eastern Europe?’ And we're like no, it’s not a country. It's a neurological movement disorder."

Brian would then undergo a life-changing surgery. Doctors in New York implanted electrodes in his brain and batteries in his chest and a constant electrical impulse now stimulates his brain.

Within 48 hours of his surgery, Brian literally got up out of his wheelchair in Times Square and started to walk.

"Within 10 minutes we walked over into a restaurant and he walked up two flights of stairs," his father Erwin Jackson said. "If you don't believe in miracles, you know, you would, and I never participated in one."

The Dystonia diagnosis - and Brian's remarkable recovery - inspired his parents to donate one million dollars to Florida State University to train future doctors to recognize its symptoms and fund research by scientists like Dr. Pradeep Bhide. He’s trying to find the cause and a cure for Dystonia.

Deep brain stimulation, Bhide said, worked for Brian, but it doesn’t work for everyone.

"Long term we need a cure, not just an ongoing treatment," Dr. Bhide said.

Brian is now 26. He’s healthy, happy and working. He calls his family's opportunity to help someone else in curving, crippling pain - a Godsend.

"To eventually find a cure, what we're doing right here in my own hometown,” Brian Jackson said, “Uh … yeah ... I can't say anything about it. It's wonderful."

Dystonia researchers at the FSU College of Medicine's Center for Brain Repair work hand in hand with Tallahassee Memorial Hospital’s Movement Disorders Clinic. They also collaborate with other scientists in other states.

Tomorrow night, FSU's College of Medicine and the TMH Foundation are teaming up to raise money for Dystonia research and training.

They're hosting the Valentine’s Day Soiree featuring Broadway's most famous "Phantom of the Opera" Davis Gaines.