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Speak Up: Shaken but not Staid


doi: 10.1097/01.NNN.0000370195.60665.68

Looking back at 20 years of Parkinson's disease.

Journalist Joel Havemann looks back at 20 years of Parkinson's disease.

Joel Havemann is the author of A Life Shaken: My Encounter with Parkinson's Disease (Johns Hopkins UP, 2002).

Feb. 5, 1990: A date, for me, that ranks with Nov. 22, 1963, when John F. Kennedy was assassinated. It's the day that Stephen G. Reich, M.D., a neurologist at Johns Hopkins University Hospital in Baltimore, MD, diagnosed me with Parkinson's disease.

A lot has happened in the 20 years since. Terrorists leveled the World Trade Center. The United States fought two wars with Iraq and one in Afghanistan. Voters replaced a very conservative president with an African American.

And French medical researchers developed a surgical technique called deep brain stimulation that makes life livable for many of us with Parkinson's. Electrodes inserted into the brain, wired to batteries in the chest, inhibit activity in brain regions that are overactive in the disease. Before the operation, in 2004, my tremor had grown so violent that the usual Parkinson's drugs couldn't control it. Since then I've been virtually tremor free.

But deep brain stimulation is no cure. The treatment has been less effective in combating the stiffness and shuffling gait that are the paramount symptoms for many with Parkinson's. And it doesn't fix the misbehaving parts of the nervous system that control swallowing and excretion. As a result, I frequently choke on food, and I'm constipated much of the time. Both, if not treated properly, can kill.



Parkinson's research has exploded in recent years, and authorities are forever promising a cure just around the corner. Gerald Fischbach, former head of the National Institutes of Health, told the U.S. Senate that he “wouldn't rule ... out” a cure within five years. The trouble is that he said it in 1999. I don't expect a cure for Parkinson's in my lifetime. After all, it's a disorder of the brain, the most complicated three-pound object on earth. Much about the disease is is unknown. What causes it? Is it inherited? How does it kill the brain cells that manufacture dopamine, the brain chemical that goes AWOL in Parkinson's?

Twenty years ago, one drug and one surgical procedure seemed to have the potential to slow the relentless destruction of dopamine-making cells and even contribute new, healthy cells. The drug selegiline seemed to protect the brain's dopamine cells that hadn't yet succumbed to the disease. But the promise was dashed by a subsequent study. Then there were the brain cells of aborted healthy fetuses. Could they take root in the Parkinson's brain and produce the missing dopamine? Sometimes yes, but with terrible side effects.

Today two other therapies have taken the place of selegiline and fetal tissue. Stem cells from human embryos, the progenitors of all human cells, can be manipulated in the laboratory to develop into dopamine-producing brain cells. But research into this promising area was discouraged for eight years by President George W. Bush because of anti-abortion sentiment.

Researchers are also investigating chemicals called growth factors, which have protected healthy brain cells and rejuvenated dying ones in laboratory animals with Parkinson's. But in three recent trials, drug makers found that human subjects treated with growth factors did not improve significantly more than others who received a placebo. Although work with stem cells and growth factors continues, both pose thorny technical problems as basic as how much of each to place in the brain and where to place them.

At 66, I'm the lucky Parkinson's sufferer who doesn't need a medical breakthrough to lead a full, productive life. I'm thrilled to be in such good shape after living with the disease for 20 years. I largely credit Dr. Reich, who has been my doctor for 20 years, and Dr. Ali Rezai, the surgeon at the Cleveland Clinic who deftly electrified my brain. Support from family and friends and a determination not to give up without a fight haven't hurt either. With resources like those on my side, I feel like I can carry on for another 20 years.

©2010 American Academy of Neurology