At this point in my life I'm not involved with DBS though I want to learn
about it.  This latest article is probably the most DBS-Parkinson
family-patient friendly article I've come across.  Thank you!

E of the headdress


-----Original Message-----
From: Parkinson's Information Exchange Network
[mailto:[log in to unmask]]On Behalf Of Niwana Martin
Sent: Thursday, February 28, 2002 6:03 PM
To: [log in to unmask]
Subject: Re: ARTICLE: (DBS) Procedure Offers Chance To Calm Parkinson's
Tremors


----- Original Message -----
From: "Murray Charters" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Thursday, February 28, 2002 2:03 AM
Subject: ARTICLE: (DBS) Procedure Offers Chance To Calm Parkinson's Tremors


> 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_stand
ard.xsl?/base/science/101472818821650261.xml
>
> * * *
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn
>

----------------------------------------------------------------------
To sign-off Parkinsn send a message to: mailto:[log in to unmask]
In the body of the message put: signoff parkinsn

----------------------------------------------------------------------
To sign-off Parkinsn send a message to: mailto:[log in to unmask]
In the body of the message put: signoff parkinsn