EM Summer 2004

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Back in time
Treatment at Emory for a painful movement disorder
allows a young attorney to reclaim his life

Peter Cohen has been stared at, mocked, even physically threatened. Over the course of two decades, the thirty-nine-year-old’s body had twisted and contorted due to a neurological movement disorder called dystonia, which causes involuntary muscle contractions, abnormal movements, and awkward postures.

When Cohen walked, he was forced to bend over at the waist as if picking up something from the ground. In a video shot for a television news program, he could barely drink a cup of water without spilling it or steer a spoon to his mouth while eating. He spent much of his time lying in bed or on his couch.

“The hardest thing for me was getting up in the morning and not having anywhere to go or anything to do in particular,” says Cohen, a lawyer in Portland, Maine.

About three hundred thousand Americans have dystonia, making it the third most common movement disorder behind Parkinson’s disease and essential tremor disorder. Dystonia can affect muscles in the arms, legs, neck, torso, eyelids, face, and vocal cords.

“When we want to make a movement, you or I have a nice orchestration of muscles activated and muscles inhibited,” says Jerrold Vitek, a neurologist and dystonia researcher at Emory. “In [people with] dystonia, everything’s playing a different tune, so they can’t organize muscle movement the way we can.”

Cohen experienced the first signs of the disorder when he was sixteen. He had to stop playing the cello because he couldn’t perform the fine muscle movements needed to bow; he also was having difficulty writing with his right hand. After visiting several doctors, he received a diagnosis of dystonia.

Mild cases, which resemble writer’s cramp and often strike musicians, surgeons, or others who use their hands to perform repetitive tasks, can sometimes be relieved by injections of Botox. But Cohen’s case went far beyond this. His condition worsened dramatically when he was in law school at the University of Pittsburgh in the early 1990s. By 1993, Cohen–who should have been in the prime of life at twenty-eight– began having difficulty walking. Despite various treatments over the next decade, his dystonia worsened, involving more muscles and twisting him into even more painful positions.

In 2002, Cohen happened to hear Mahlon DeLong, chair of the neurology department, speak at a symposium about Emory’s deep-brain stimulation treatment for movement disorders. Emory neurologists had been using the procedure, in which electrodes are surgically implanted into the brain, for five years with promising results.

The electrodes deliver controlled pulses of electrical stimulation to the region of the brain that isn’t functioning properly. While doctors aren’t sure exactly why deep-brain stimulation works, they hypothesize that the electrical pulse resynchronizes the brain.

By the time Cohen came to Emory for surgery in February 2003, he was in pain, unable to drive, and could eat, read, and walk only with great effort.

“We were convinced that Peter would enjoy substantial benefit from the surgery, but the exact degree of improvement wasn’t known,” says Assistant Professor Aviva Abosch, the Emory neurosurgeon who operated on Cohen on four occasions. Abosch implanted two electrodes in his brain, one on each side, connected by lead wires to two battery-powered pulse generators–“brain pacemakers”–in his chest.

Since his final surgery last summer, Cohen’s progress has been astounding. He can now walk upright, exercise on a treadmill, and move about with ease.

“I feel as if I’ve gone back in time. I can travel, I can get through airports without a wheelchair. I spend my days out and about,” says Cohen, speaking on his cell phone from Portland. “Yesterday, my wife and I drove around for an hour and a half looking at houses.”

“The procedure has given both of us a lot of hope,” Cohen’s wife, Sindee, told a crew that filmed her husband’s surgery and recovery for a special segment of NBC’s Today show that aired in January. As a member of the Dystonia Medical Research Foundation, Cohen has allowed extensive media coverage of his condition and surgeries in hopes of increasing awareness and raising research funds.

In all likelihood, Abosch says, Cohen will experience long-term relief of his symptoms. “We are extremely pleased,” she says. “And, more importantly, so is Peter.”

“It has changed my life,” Cohen says. “Before the surgery, I used to wake up and think, ‘I don’t know how I’m going to get through the day.’ Now, look I look forward to every moment. It has been a miracle.”–M.J.L.

 
 

 

© 2004 Emory University