Parkinson's strikes the young Parkinson's in his 30s
DIAGNOSED in his 30s | 'I had no idea how bad it would be' YOUNG ONSET | 'I
had no idea how bad it would be' -- early diagnosis often difficult but
'crucial'
July 15, 2007
BY JIM RITTER Health Reporter [log in to unmask]
Kevin Hurley was only 30 when he noticed the first sign of Parkinson's
disease.
He was playing a Neil Young song, "Powderfinger," on his guitar and fumbled
a chord change.
"I had been playing it for years, and one day I couldn't play it any more,"
Hurley said.
Kevin Hurley says deep-brain stimulation "saved my life" by helping control
his Parkinson's. Michael J. Fox (inset) was diagnosed with Parkinson's when
he was 30 years old.
His doctor said it was probably carpel tunnel syndrome.
He went to a second doctor, who prescribed Ritalin. That was after Hurley
reported another Parkinson's symptom -- difficulty concentrating.
A third doctor told him: You just need more exercise.
It took four years before Hurley was diagnosed correctly. In his 30s, he had
to come to grips with having what's usually thought to be a disease only old
people get.
Drugs can help
The average age of Parkinson's diagnosis is 60. But of the 1 million people
in the United States who have the disease, between 5 percent and 10 percent
are diagnosed before they turn 40. The best-known Parkinson's patient is
actor Michael J. Fox, who was diagnosed at 30.
Doctors are often slow to recognize these early cases. So the prevalence of
young-onset Parkinson's might be higher than what's reported.
Drugs can slow the progression of the disease. So the Young Onset
Parkinson's Association urges: "It is crucial that an early diagnosis be
made, particularly in the younger patient who will have many more years."
Electrodes in brain
Hurley, who is being treated at Northwestern Memorial Hospital, was
diagnosed in 1996. But he remained in denial for years. He convinced himself
his condition would be nothing more than a nuisance.
"I had no idea how bad it would be down the line," he says now.
As the disease progressed, Hurley needed to take as many as five drugs to
control his shaking and other symptoms. But the medicines caused sleepiness,
compulsive behavior and other side effects. And the benefits sometimes
lasted only an hour.
Even with the medicines, Hurley would fall -- often three or four times a
day. His hands shook uncontrollably. He couldn't hold things. And his
slurred, mumbling speech was nearly impossible to understand.
Last February, Hurley resigned his job as a fund-raiser for La Rabida
Children's Hospital. A month later, he underwent Parkinson's surgery at
Northwestern. A surgeon drilled two nickel-size holes in the top of Hurley's
head and implanted electrodes in his brain. The electrodes deliver tiny
electric pulses to the part of the brain involved in planning and executing
movements. The pulses appear to disrupt abnormal electrical activity.
Deep-brain stimulation is used for those who have advanced forms of the
disease and for whom drug therapy is failing. Like Hurley, many are
relatively young. To be eligible for the treatment, patients must have no
dementia -- common with later stages of Parkinson's -- and must be healthy
enough to withstand brain surgery.
'I think I'm pretty lucky'
Since he began the deep-brain stimulation, Hurley's speech has improved
dramatically, though he still can be difficult to understand. He doesn't
fall any more, but he still must walk carefully.
Hurley is taking only one drug now, and that pill keeps him from shaking for
six hours at a stretch. Deep-brain stimulation "saved my life," he says.
But Parkinson's disease is progressive, so it's possible Hurley's balance
and speech could deteriorate again, according to his neurologist, Dr. Cindy
Zadikoff.
Hurley has thought about going back to work. But a stressful job could
worsen his symptoms.
Now 41, Hurley lives alone in Chicago. His parents are deceased, but his
sister and two brothers live close by. He watches movies, listens to music,
follows Japanese baseball and helps his brothers operate a Web site on
politics.
He tries not to feel sorry for himself. "There's no point," he says. "I
don't think I've had a bad break. I think I'm pretty lucky."

Rayilyn Brown
Board Member AZNPF
Arizona Chapter National Parkinson's Foundation
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