Procedure offers chance to calm Parkinson's tremors
02/27/02
OZ HOPKINS KOGLIN

Being a drummer, Dan Sundholm noticed the tremor
in his hand long before the average person would have.

"A drummer who doesn't have coordination is in deep
trouble," Sundholm said. "And I noticed that my left arm
was not doing what I wanted my brain to tell it to do,
like I couldn't control my stick."

That was in 1989. Sundholm was 37, and Parkinson's disease
was the furthest thing from his mind. But after visits to his
family doctor, a referral to a neurologist, an MRI and
a battery of tests, the Portland drummer in the rock band
Replay, whose day job is brokering insurance, found out
that he was one of the estimated 1.5 million Americans
who have Parkinson's disease.

The complex neurological disorder causes a gradual,
progressive loss of control over movements. The disease
is so distressing that many Parkinson's patients describe
themselves as prisoners in their own bodies.
Their symptoms include tremors, rigidity, impaired posture
and balance, slowness, difficulty moving and, in some
people, intellectual deterioration.

The average age of onset is 60, but younger-onset
Parkinson's may affect people between the ages of 20
and 40.

The Michael J. Fox Foundation and the Parkinson's Action
Network estimate that the health and disability expenses
related to the disease and lost productivity in the United
States total about $25 billion annually. Parkinson's patients
in the United States spend $1,000 to $6,000 a year for
medication alone.

The disease has received increased attention in recent years
because it afflicts such prominent figures as actor Fox,
former U.S. Attorney General Janet Reno and former boxer
Muhammad Ali.

There is no cure for Parkinson's disease, but last month the
U.S. Food and Drug Administration approved the expanded
use of a deep brain stimulator made by Medtronic of
Minneapolis ushering in a new era of Parkinson's treatment.
The stimulator initially was improved by FDA in 1997 for use
in one side of the brain, and now is approved for both sides.
When it is implanted in both sides of the brain, two separate
systems are used.

In deep brain stimulation, electrodes are implanted in the
brain and connected to leads, or wires, that run under the
skin to pulse generators implanted in the chest or abdomen.
The generators are similar to a heart pacemaker. They send
a constant stream of electrical pulses to the brain, blocking
the tremors caused by Parkinson's. To turn the stimulator
on and off, the patient holds a magnet over the pulse
generator. The generator must be replaced every three to
five years, the life of the battery.

Treating Parkinson's is a challenge because it involves
a mix of medicines that can become less effective over time,
or even make symptoms worse. That's what happened to
Sundholm, motivating him to join an Oregon Health &
Science University study of the stimulator in July 2000.

"It was a kind of Catch-22," Sundholm said. "You take one
medicine to take care of the tremor, and then you get
dyskinesia, which is an involuntary movement -- like my
head kept rolling around on my shoulders. Then I would
get these horrible cramps in my neck muscles,
like somebody's ripping my head off."

Elisabeth Brittin, executive director of the Parkinson's
Action Network, a group that focuses on Parkinson's
research and public policy, called approval of the Medtronic
system "a very positive breakthrough."

Paul Maestrone, scientific and medical affairs director
of the American Parkinson's Disease Association, which
has been in the forefront of Parkinson's research since 1961,
said the device is "an important new tool to advance the
quality of life of people suffering Parkinson's disease."

Dr. Kim J. Burchiel, chairman of the department of
eurological surgery at OHSU, was the first person in the
United States to implant the deep brain stimulator.
In improving a Parkinson's patient's quality of life, the brain
stimulation system is as great a breakthrough as the drug
levadopa was 30 years ago, Burchiel said, although more
research is needed. Levadopa, or L-dopa, is a standard
medication for treating Parkinson's.

FDA approval of the brain stimulation system potentially
makes it available to thousands of Parkinson's patients.
But the device is expensive, upward of $100,000, plus the
cost of follow-up replacements of the system's generator,
Burchiel said.

No national decision has been made about whether the
Center for Medicare and Medicaid Services, formerly the
Health Care Financing Agency, will pay for the treatment,
an agency spokesman said. Private insurers usually
follow the lead of the federal agency.

Nevertheless, it could turn out that even a hefty initial
cost for the device may prove cost-effective if the system
keeps people out of nursing homes and if patients spend
less money on medicine and doctor visits, Burchiel said.

The paradox is that despite the overwhelming support
deep brain stimulation has received in anecdotal reports
from patients, neurologists and neurosurgeons and from
case studies in the United States and abroad, "right now
there is no gold- plated evidence that this works,"
Burchiel said.

Although the FDA has found deep brain stimulation
to be safe and effective, he said, funding agencies and
insurance companies probably will want more evidence
based on a large, long-term scientifically structured trial.
"I don't want to undersell it, but I want to indicate
somehow that there is still a lot of work that needs
to be done."

To that end, Burchiel's OHSU group is one of six
in the country designated to participate in a landmark
cooperative study financed by Veterans Affairs and
the National Institutes of Health. It will be the most
complete study ever to explore deep brain stimulation
technology, its operation and long-term effects.

Potential candidates for the study, which is set to
begin in the next few months, would have to be referred
to the OHSU group by their neurologist.

"We want to make it clear that even though this is
FDA-approved, they can definitely come here and get
the deep brain stimulation system outside of the (study)
protocol," Burchiel said. However, "we feel patients --
probably for their benefit and ours -- should be in the
research project."

Patients in the study will get more attention and follow-up
than they would otherwise, and they will have access to
a new high-technology generator that for the first time will
allow patients more control over the stimulation.

The surgical risks of implanting the stimulation device
are minor, Burchiel said, but there have been occasional
reports of infection, hemorrhages and strokes among the
thousands of cases in this country and Europe. The drawback
to treatment is that it's available in the Northwest only at OHSU,
although a few procedures have been done at the University
of Washington, he said.

Local neurologists have no experience with the device,
"so patients have to return to the mother ship to have
their stimulator adjusted," he said.

Deep brain stimulation has allowed Sundholm, who had
sold his drums and switched to keyboard, to return to
drumming.

"It was a blessing for me," Sundholm said. "Right after
the surgery, I had flexibility back in my arms. Before the
surgery, I was checking out disability options and how
to apply for Social Security. The surgery came, and
I don't need to fill out those papers yet."

You can reach Oz Hopkins Koglin at 503-221-8376
or by e-mail at [log in to unmask]

SOURCE: The Oregonian
http://www.oregonlive.com/news/oregonian/index.ssf?/xml/story.ssf/html_standard.xsl?/base/science/101472818821650261.xml

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