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