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Shuffling In Grandmother’s Footsteps
THE LAST INAUGURATION MY GRANDMOTHER SAW was Lyndon Johnson’s. Both her newspaper and her TV were black-and-white. It was the 1960s, and she knew nothing of the Internet. She’d built a family business of five discount shoe stores in four states with no computer. In her retirement she would have been thrilled by cell phones for keeping in touch with her five children and fifteen grandchildren. She probably would have e-mailed the president whenever she had a complaint. Science has made my "golden years" easier and safer and far more connected with the world than my grandmother could even have imagined, except for one major factor. We’ve both suffered from Parkinson’s disease, although forty years apart. Unlike my grandmother, nine years after my diagnosis I can still stand, walk, swallow, type, and speak to my grandchildren like a normal person, because I take a pill every three hours (more frequently as time goes on). Levodopa, commonly known as L-dopa, wasn’t approved by the Food and Drug Administration until 1970—four years after my grandmother’s death—so she had no available treatment. After I take it, L-dopa converts to dopamine needed by my brain and body, but even these pills will stop helping me at some point. Then I’ll be as immobilized as my grandmother was two generations ago.
WE BOTH WERE DIAGNOSED WITH PARKINSON’S as we were winding down our careers, and both retired to a far more sedentary life than we’d led before. What I remember of my grandmother’s waning years is passivity. She sat on her sofa, dressed as immaculately as ever but hardly talking and rarely moving except for the tremors in her hands. A full-time nurse tended to her, and her children visited her every day. If she’d lived long enough for L-dopa, she would have had several more mobile years, but it neither cures nor slows the disease, and it adds its own side effects even as its effectiveness wanes. Thus, in the decades between my low-technology grandmother and me with my computer, my handheld personal digital assistant (PDA), cell phone, satellite TV, microwave oven, air-conditioned car, e-mail, voice mail, text messaging, and unlimited long-distance calling, my long-term prospects haven’t improved. For the short term, I have available an arsenal of ammunition: dopamine combinations, dopamine agonists (which mimic the effect of dopamine on the brain), and MAO inhibitors (which extend the action of L-dopa by inhibiting an enzyme that breaks it down). Some drugs reduce tremors, some stretch the effectiveness of other drugs. There’s a hypodermic that acts quickly for emergency needs, and a tablet that can be chewed without requiring water. I have antidepressants and drugs to reduce the side effects of the other drugs. My doctor adds, subtracts, increases, and decreases them in a constant balancing act as my disease inevitably progresses and the drugs inevitably become less effective. I have the prospect of surgery (deep brain stimulation) to buy me more time and reduce my drug dosages, although it’s most effective for tremors and the uncontrollable movements associated with drug effects, which aren’t my problems. I have support groups, exercise classes, symposia, and conferences to keep me up-to-date about scientific advances. And I have a steady stream of e-mails and listservs to discuss the implications as scientists investigate the human genome and manipulate cells in ways that were unimaginable in my grandmother’s day. I’m able to keep active and in touch far longer than my predecessors could. No treatment has been proven to slow Parkinson’s progression, much less cure it, but in the meantime it’s a quirky chronic disease that sometimes treats me kindly and progresses gently but can’t be trusted to do so for long. It’s like living with a trained tiger that’s eventually going to get old or sick and turn on me, but in the meantime it can be kept quiet if I’m vigilant in its care. I keep reminding myself to focus on the present, but sometimes the future intrudes. I was on a bus in Turin, Italy, with a group of colleagues, when my attention was caught by a thin woman, probably in her seventies, lurching down the street. She had no cane or walker, no companion or nurse. She was curled over like a question mark, and she looked as if each step was going to shake her apart. I’m sure I was the only one on the bus to see myself in that woman. She had Parkinson’s. I’ve been to three funerals recently, all for men around my age, all with Parkinson’s. One choked to death at a bar mitzvah. Another left for vacation and never got there. The third died from a fall. All three had seemed the same as ever when I saw them at the last support-group meeting.
EVEN THOUGH I WALK WITH A CANE, few people recognize that I have Parkinson’s, and those who already know it often comment, "I’d never guess." They sound relieved when they compliment me on looking well. I’m glad that I can lead a public life looking fairly normal, but my private life is far different. Here is what they’d see if they hung around me for the day. My bladder wakes me up in the morning. Before I can attend to it, I have to figure out how to get out of bed. After nine years of struggling, I still haven’t found a mechanism that makes it easy to turn over or sit up in bed, much less to extricate myself from it. (Eventually I’ll need bars on my side of the bed, and I’ll move to the first-floor bedroom.) In the bathroom, bookshelves look far less clinical than grab bars, although they aren’t quite as efficient. Most of my life, I woke up with a mental and physical bounce. Now I wake up fighting: fighting my way out of bed, fighting to swallow my handful of pills, fighting to stay upright when my stiff back bends me over and my clenched right foot won’t play its part in walking from my bedroom to my study. I postpone showering and dressing until I’ve recovered from all this. "How do you feel?" asks my husband, who has been up for hours and probably done the shopping already. "I don’t know yet." I won’t know for an hour, until my medications (that’s plural) have kicked in and I can assess the queasiness, aches, restless limbs, emotional state, and energy level they have achieved this particular day. One of the meanest tricks this disease plays is unpredictability. I take L-dopa every three hours, then wait about an hour until it reaches my brain. Its efficacy is governed not just by my body’s condition but by the weather, the level of noise or activity, and of course my state of mind. Sometimes one of my hands is icy, or I feel slightly feverish as well as chilled. Other times just a bit of activity will send sweat pouring down my face, neck, and back, fogging up my glasses and leaving me dripping. I no longer expect to be able to walk two blocks, although occasionally when I stand up I find that I’m unusually limber. For several years I’ve walked with a cane because it helps prevent the falls I was taking two or three times a week. I sometimes need it for leaning on, and although I don’t always need it for walking, I never know what to expect when I leave the house. I still try to cook, although this once-beloved hobby now feels strenuous, even when I do it sitting down. As for reading, a strong light is now necessary, and reading glasses help my inefficient focus, but my speed is about half of what it once was. Typing can be rapid and accurate some parts of the day, and possible with only one finger other parts of the day. At those times, my computer’s mouse feels as stubborn as a two-year-old. My e-mails are no longer chatty, and because of my recalcitrant fingers, I often have to redial phone numbers several times. I rarely feel comfortable in my skin, except in a swimming pool. That’s where I get my exercise, at least when I can overcome the inertia that tends to keep me homebound. This is what’s called a moderate stage of Parkinson’s. My face has not yet tightened into a mask. My voice is softer than it was, but it still achieves a sociable volume and clarity. I don’t twitch or sway in any noticeable way; I don’t yet drool. My feet don’t run without my bidding or stop short without my permission, and they do turn corners. As for the less visible parts of me, my autonomic functions—blinking, swallowing, digesting, for example—are slowed but not severely so. And my mental functioning doesn’t seem to have suffered more than my aging would normally account for, at least since antidepressants have controlled my anxiety and depression. Parkinson’s is confusing because nearly anything can be pinned on it. Nausea, dry mouth, blood pressure problems, fidgetiness, lassitude: is it Parkinson’s-generated, or should I blame it on my heart, my diet, my lack of exercise, or simple laziness? Are my problems due to insufficient sleep, or is the sleep problem a side effect of Parkinson’s? Arthritis, bursitis, backache? Which doctor should I call? I’ve seen Parkinson’s underdiagnosed and overdiagnosed, undertreated and overtreated. Although there is a scanner that can show visual proof of the effect of Parkinson’s on my brain, it is costly and rare. The commonplace method of diagnosing the disease—or of being sure when symptoms are unclear—is to administer L-dopa. If the patient improves, the patient has Parkinson’s. There is nothing else a patient can know for sure except that it is going to get worse. It’s commonly said that by the time you’re diagnosed, you’ve already lost 80 percent of the pertinent brain cells. You never know how long you’ve had Parkinson’s, or how long you will continue with it. With the diagnosis comes the warning: its progress might be measurable by months or by years. You can only guess which symptoms will affect you, or how tolerant you will be of the various medications, and it’s believed that your pattern has already been set. A person who’s a slow progressor continues to progress slowly; a tremor-dominated "newbie" will probably always experience tremors. Lately, exercise has been added as an important part of treatment. Clinicians are also paying more attention to the emotional side of Parkinson’s, as well as the intellectual. Parkinson’s has been increasingly understood as a more intricate disease than it once seemed to be, a disease that changes more of the brain than the substantia nigra, which is the site where cells first die off. Scientists now recognize that the damage compromises other parts of the brain either directly or by a kind of domino effect.
A MILLION AMERICANS ARE SAID TO HAVE PARKINSON’S; about 60,000 new cases are diagnosed each year. That number hasn’t changed much: Time magazine estimated in 1970 that a million cases existed then. In the next generation behind me, that number is expected to double. The baby boomers are reaching the Parkinson’s age (generally sixty and older), and the environment is thought by many to be increasing the toll. Given the new palliative treatments, people with Parkinson’s are living longer—and more expensively—now that there are medications to buy. The National Institutes of Health (NIH) estimates that each American with Parkinson’s spends an average of $2,500 a year for medications. I spend 50 percent more than that even after my health insurance reimbursements. There is a sharply growing economic need for our society to find a cure. Ever since I heard of Parkinson’s, I’ve been told that a cure might not be right around the corner, but it’s certainly just down the road. How long a road? In my grandmother’s day, the answer was probably ten years away. Whatever year I’ve asked since, the answer is invariably the same: probably ten years. I’m filled with hope when I see the heroic efforts of Michael J. Fox and the Parkinson’s foundations, associations, action networks, and medical faculties on behalf of the disease. With a new administration in Washington, I have increased expectations of federal support as well. I expect some of the roadblocks to research to be swept aside. Stem cell research in the United States has been in a holding pattern for the past eight years, Parkinson’s researchers say. This month’s presidential inaugural means to me that leftover stem cells from fertility clinics might finally be put to good use on behalf of medical research rather than thrown in the trash. That alone makes me optimistic about the possibility of slowing the disease. In Bill Clinton’s administration, the NIH budget for Parkinson’s research doubled. In the George W. Bush administration, it was halved. With the cost of living rising, the Parkinson’s research budget has been marching backward. One researcher warned this past November that U.S. research was "on the verge of collapse." As for pharmaceutical companies’ research, I understand that combining two existing drugs is less costly for developing and testing and less risky to the bottom line than investigating new drugs. But with research money so scarce, a third dopamine compound agonist seems like a waste. Furthermore, in some cases, patients have protested that promising drug tests have been stopped because of failed profitability rather than failed viability. Ironically, the fact that research has made the disease easier to live with has created a powerful pressure group of patients who provide services for themselves, raise money, and increase the visibility of the disease. People with Parkinson’s work hard on their own behalf. They’ve developed the Parkinson Pipeline Project (http://pdpipeline.org), which organizes information about clinical trials on the Internet and discussion groups to keep patients informed. Parkinson’s patients also devote their ever-shrinking "on" hours to lobbying Congress, in hopes of changing those mythical ten years to a cure into reality. In the years since my grandmother’s diagnosis, research has brought symptomatic relief and more social services, but a cure or prevention for Parkinson’s still doesn’t exist. Parkinson’s is an expensive disease. It’s already costing our society somewhere between $5 billion and $25 billion a year when you add lost income and disability payments to the direct medical costs. As the population ages and the prevalence of the disease increases—as it will—the increased human and economic toll will also increase the pressure for research that is unhampered and well funded. Thus, what I see as my main hope is the aging of the population. The baby boomers are my cavalry. Those baby boomers can’t grow old fast enough for me.
Phyllis Richman (richmanp{at}verizon.net) was the Washington Post’s food critic from 1976 to 2000. She is the author of three mystery novels, the most recent of which is Who’s Afraid of Virginia Ham? (HarperCollins, 2001). Richman has also written an article about Parkinson’s disease that appeared in the Washington Post. She lives in Takoma Park, Maryland.
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