at Emory for a painful movement disorder
allows a young attorney to reclaim his life
Cohen has been stared at, mocked, even physically threatened.
Over the course of two decades, the thirty-nine-year-olds
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 Parkinsons
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, everythings playing
a different tune, so they cant 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 couldnt
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 writers 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 Cohens 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, Cohenwho 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 Emorys
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
The electrodes deliver controlled pulses of electrical stimulation
to the region of the brain that isnt functioning properly.
While doctors arent sure exactly why deep-brain stimulation
works, they hypothesize that the electrical pulse resynchronizes
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.
were convinced that Peter would enjoy substantial benefit from
the surgery, but the exact degree of improvement wasnt
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 generatorsbrain
pacemakersin his chest.
his final surgery last summer, Cohens progress has been
astounding. He can now walk upright, exercise on a treadmill,
and move about with ease.
feel as if Ive 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.
procedure has given both of us a lot of hope, Cohens
wife, Sindee, told a crew that filmed her husbands surgery
and recovery for a special segment of NBCs 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.
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.
has changed my life, Cohen says. Before the surgery,
I used to wake up and think, I dont know how Im
going to get through the day. Now, look I look forward
to every moment. It has been a miracle.M.J.L.