Every Parkinson’s patient is curious about what the future holds. One way to anticipate what’s coming is to learn from parkies further along in their disease. Unfortunately, it turns out that while many patient memoirs chronicle the early years of PD, there are very few accounts that document the long-term trajectory of the condition. An exception is Joel Havemann’s smart book, A Life Shaken.
The son of a journalist, Havemann wrote for the student-run Crimson newspaper while he studied mathematics at Harvard. He then became a full time reporter – working at the Oregonian, the Chicago Sun Times, the National Journal, and the LA Times, where he remained until recently as an editor in the paper’s Washington bureau. Along the way, he married a fellow journalist, Judy Nicol, and together they raised three children. Then in 1989, when he was 46 years old, he received a sign that his life was about to change. Interviewing a job candidate in a swanky Washington restaurant, he recalls eating desert – some very expensive raspberries –“only to discover that I couldn't get them from the bowl to my mouth with a spoon. My hand was too shaky; they kept falling off.” In the following months, his family also began to notice he was trembling. His 7-year-old daughter even said, “Daddy, you're shaking.”
In 1990, neurologist Dr Stephen Reich diagnosed Joel Havemann with PD, telling him, "It's not the end of life as you know it. Parkinson's is like diabetes: it can be managed well even if it can't be cured … If you take care of yourself you could be good for many more years." And indeed, he had many good years working as a journalist for a paper that supported him fully. Havemann told his colleagues about his Parkinson's disease immediately. His boss sent round a memo saying, "Joel is shaking not because he's afraid of you, but because he's got Parkinson's disease. He wants to go about his business. Please let him." The paper then sent him off for a three year posting in Europe. Joel started on L-dopa midway through and responded so well, he recalls, that "Parkinson's hardly handicapped me in three years as the Brussels correspondent. When I took it, I looked no more as if I had Parkinson's disease than my dog."
Joel, a skillful reporter, is insightful about what happened next. For about 6 or 7 years – what Joel calls the first phase of his disease –L-dopa worked its magic. But inevitably, he developed motor complications (MCs) and bit-by-bit, he became impaired. In phase two of his disease, he gave up playing tennis, gave up driving, and eventually gave up work. In a vivid passage, he captures what it’s like to be on the losing side of a long war. "Every week, every month, every year, the Parkinson's beast grows fiercer … Cunning and insidious, Parkinson's is intent on taking over my very existence. I spend much of each day thinking about it and coping with it. It is becoming my obsession, the embodiment of evil: what Moby Dick was to Capt. Ahab; what Prof. Moriarty was to Sherlock Holmes."
His book was published in 2002, 12 years into his disease. I was curious as to what had happened since. So, in August 2013, I visited Joel, now aged 70, at his home in Washington, D.C. I asked him to describe the trajectory of his disease.
Joel Havemann: I had a lot of good years. I was 46 years old when Dr. Reich uttered his diagnosis, and I blurted out, "What will I be like when I'm 60?" Well, I turned 60 in 2003 and, by Parkinson's standards, I was fine.
Jon Palfreman: So what’s happened since?
Joel Havemann: My quality of life took a big hit when I began falling. Mostly they were harmless, short-distance falls occasioned by my determination to keep doing things the way I always had: like stepping over puddles, or carrying something heavier than I safely could. More dangerous was festination: that’s when I broke into an involuntary run – I shuffled forward making tiny steps. But it was a run that could be stopped only by grabbing a tree, a pole or other fixed object – or sliding like a baseball player diving into second base.
One morning I fell three times during a short walk to a neighborhood bus stop, breaking my wrist, and I developed some colorful purple shiners around my eyes.
Jon Palfreman: In your book you write about confronting the usual complications of taking L-dopa. To manage your tremor and to move freely you needed more and more medicine, but that ended up giving you involuntary movements you didn’t want – dyskinesias. But while you were in Europe you met with Dr Pierre Pollak, one of the French neurosurgeons who (along with Dr Alim-Louis Benabid) pioneered a new therapy, Deep Brain Stimulation (DBS).
Joel Havemann: Yes, and in 2004, I became one of the first US patients to undergo DBS surgery. After masses of research, I trekked out to the Cleveland Clinic, where Dr. Ali Rezai was reputed to be the best DBS surgeon in the U.S. (He has since moved to Ohio State.) I submitted to a six-hour operation in which he implanted two stimulating electrodes into both sides of my brain. At the very end of the operation, to check my cognition, they asked me to count back from 100 by sevens, and I remember that as a joke, I decided to do it in French, saying, “cent, quatre-vingt -treize, quatre-vingt-six, soixante-dix-neuf …” That blew them away.
Dr Rezai did a great job. I became all but tremor-free on about one-third of my old L-dopa dose.
Jon Palfreman: So L-dopa and DBS helped you to manage the motor problems of PD. They bought you more time?
Joel Havemann: Yes, they helped a lot. But as we now know Parkinson’s is not just a movement disorder. Many parts of the brain are affected. And, like other patients, I found that levodopa and DBS don’t really help with balance, they don’t prevent falling. And as time went on, I developed other problems. My eyesight deteriorated, and in many cases I saw double, to the point where I found it difficult even to read. My voice became soft and the words, difficult to distinguish. Would these symptoms have happened even without the DBS? Who knows?
Jon Palfreman: Perhaps the biggest fear Parkinson’s patients have – one that you write about in you book – is of developing dementia. Have you noticed any changes in the way you think?
Joel Havemann: Yes, I have. In the last six months, it seems that I’m just not as sharp as I used to be. I was a mathematician by training… I used to be able to take two three-digit numbers and multiply them just like that in my head. Now I can't do it. I lose track of one of the numbers. Whatever success I’ve achieved in 70 years, I owe to brainpower, certainly not to physical strength. Now the disease is stealing my intellect on top of everything else. It’s the worst part of Parkinson’s by far. The prospect of becoming entirely dependent on my family, just as my kids are entering their prime years… well it feels pretty scary.
But I don’t want to overdo the gloom. In fact, there is a bright side, maybe several. For one, Parkinson’s research is moving ahead at nearly warp speed. Much more is known than when I got diagnosed 23 years ago. So, I haven’t given up hope of a cure, although the journalist in me doubts it will happen in my lifetime. And beyond the science is the human factor. One thing about having Parkinson’s is that you meet other people with the condition. And let me tell you, people with advanced Parkinson’s are some of the bravest people I’ve come across. They don’t ask, “Why me?” They declare, “Let’s lick this thing.” Even if they need wheelchairs, they buttonhole members of Congress to demand work toward a cure. They don’t give up.
Then there is family – family and friends. I suppose there are families that are torn asunder by Parkinson’s, but I’ve never met one. The families I know have rallied. Judy and our kids and two grandkids have gone far out of their way with kindnesses big and small. I have always loved them all. Now I appreciate them more than ever.