Shaken, but Not Toppled

Joel Havemann has been a familiar presence in Washington journalism since he arrived in 1973 from the Chicago Sun-Times to join the staff of National Journal. He later moved to the Washington bureau of the Los Angeles Times, where he was responsible for overseeing much of the political and economic copy that moved west. At the Times, Havemann realized his lifelong ambition of becoming a foreign correspondent. Based in Brussels for three years, he covered economics at a time when Europe was contemplating the move to a single currency.

For a journalist, that's an enviable career. What's more, Havemann has a supportive wife, who is also a successful journalist, and three healthy children. But there is a hitch in this otherwise glowing scenario. In 1989, an encounter with a bowl of raspberries at a Washington restaurant sent Havemann to his family doctor. His daughter, then 7, had told him, "Daddy, you are shaking a lot"; in fact, his hands were so shaky that he couldn't keep berries on his spoon. After months of inconclusive tests, Havemann's medical-student stepdaughter directed him to a neurologist at Johns Hopkins University. There, Dr. Stephen Reich delivered the diagnosis that Havemann didn't want to hear: Parkinson's disease. But Parkinson's, Reich reassured him, "is not the end of life as you know it." Like diabetes, he said, it can't be cured, but it can be managed.

Thus began an odyssey that, years later, has led to A Life Shaken: My Encounter with Parkinson's Disease, a book that belongs on the must-read list for each of America's million or so Parkinson's patients. Joel Havemann has blended his considerable talents as a journalist with his personal reflections to produce a book that explains, objectively and courageously, what is known about the disease and what it is like to live with an insidious condition that slowly impairs one's ability to control body and mind.

Once past the denial stage, Havemann dealt with Parkinson's as "an urgent story that needs reporting," in much the same way he handled another crisis years ago, when John F. Kennedy was assassinated and The Harvard Crimson decided to put out a special edition. "We escaped from reality by plunging headlong into it," he recalls. "So it has been with me and Parkinson's." In this plunge, he has learned everything he could about Parkinson's. Working with Reich, he has also learned to cope with symptoms and live, as normally as possible, with a disease that can suddenly turn such routine tasks as buttoning a shirt or flipping pancakes into insurmountable challenges.

In his forward to the book, Reich portrays Havemann's story as "an objective, detailed, lucid account of Parkinson's disease—in my view the best by a non-physician." Indeed, Havemann explains with clarity and precision what is known, and not known, about the disease. His descriptions of the brain and the chemical imbalances that produce the diverse, yet individual, complex of Parkinson's symptoms provide a solid framework for understanding the disease.

As Havemann recounts the gradual progress of his own disease, he explains what drugs are available, how they work, and their drawbacks, and he also explores the pros and cons of different surgical procedures. Looking into the future, he describes the benefits that genetic engineering, stem-cell research, and other potential therapies might one day offer, but he recognizes that "medical science doesn't have much time if it is to rescue me from Parkinson's worst ravages."

He chides the medical profession for paying more attention to developing drugs than to finding effective ways to help people cope with the disabilities that mark the disease. Staying active (he is still working for the Times), a sense of humor, not taking yourself seriously, having a supportive family—all of these help, the author has found. "Parkinson's changes your life, but it doesn't destroy the opportunity for accomplishment, contribution, pleasure and love," he says.

At no point does Havemann flinch when confronting his fears about the future. People do not die of Parkinson's the way people die of cancer or heart disease, he points out; they are far more likely to die of complications from the disease. "So I cannot avoid contemplating my own death," Havemann writes. "Nor can I know how I will react when my condition deteriorates seriously." Those apprehensions aside, he recognizes that the disease has given him much: "Admiration for humanity. Reverence for nature. Love of family. These are my core beliefs. These are my religion. This I have learned from my disease. Parkinson's, do your worst. You can't rob me of that."

So far, 12 years into the disease, Havemann counts on drugs to keep him functioning and acknowledges that without them, he would be "a trembling cripple twenty-four hours a day." He also knows that at some point, as the disease's grip on him tightens further, drugs won't be able to keep his symptoms in check. Then he may turn to surgery; although he is reassured to know that option is available—and statistically safe—he nevertheless finds it a frightening prospect.

Naturally, Havemann longs for a cure: "Not a therapy that merely masks the symptoms temporarily but one that restores the brain to something like its original health." Yet, even as he wrote his chronicle, he knew that promised cures had fallen short, and that "there is still no reliable way to stop or even slow Parkinson's relentless progression, much less reverse it." In retrospect, perhaps his book should be on everyone's must-read list, for broader understanding of this disease would increase public support for enhancing the research that might eventually help cure—and prevent—this crippler of too many.