Hope is the one antidote
FOR PEOPLE with Parkinson’s disease, the rest of your life begins on the day of your diagnosis. It’s your own Sept. 11 or, if you’re old enough, Nov. 22, Kennedy’s assassination. It’s unforgettable.
For me, that day was Feb. 5, 1990. It was like a death sentence with no chance of a pardon. I was told control of my body would slip away. I feared the same would happen to my mind. The deterioration would be gradual, like the disintegration of a glacier -- at the end of each year, more of the glacier would have dropped into the sea.
As far as I can tell, there is no guaranteed formula for coping with Parkinson’s or other degenerative neurological diseases. There’s no easy way to deal with tremors so violent that you can’t hold a glass of water. There’s no approved method of not falling down on your way to the bus stop, breaking your wrist or taking 10 stitches in your eyelid.
Sure, you can make life more tolerable. If Parkinson’s is your disease, some drugs mask the symptoms. There’s even an operation (which I had two years ago) to control the disease’s effects. And regular exercise can help you get through the day.
But all the while, the disease eats away at your brain. Nothing can stop that. You have good days and bad days, but eventually the bad days predominate.
In the end, there’s really only one thing that can help you face another day.
It’s hope. Either you’ve got it or you don’t.
I’m by nature a hopeful person. I don’t say that as a boast but merely as an observation.
It’s not that I think everything is ideal. Right now I have a terrible time keeping upright when I walk. Instead of long, sure, heel-first strides, I’m more likely to lean forward and take short, mincing, tiptoe steps that have to be quick just to keep my feet under my center of gravity. Usually I can force myself to slow down and stop while I’m still on my feet; sometimes I stop by pitching forward, face-first.
I’m so likely to topple over that I go out of my way to stay firmly planted in a chair. Just getting up from my desk to go to the bathroom requires a major commitment. Do I really have to go? What used to be routine now involves considerable thought.
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SOME formerly mandatory activities of daily living are fast becoming optional. It is only out of respect for my mother, who taught me to live properly, that I continue to hang up my pants when I go to bed. There’s no other way to say it: I hate hanging up my pants. It requires all the basic skills of coordination and dexterity that I lack. You have to hold the pants by the creases in the legs and somehow feed the legs through the hanger, and then get the pants to fold over the horizontal bar on the hanger so that there are no wrinkles and the creases are right at the folds.
Whew. It exhausts me just to describe it. I hope everyone appreciates how much trouble it takes to keep my pants looking fresh. But the fact that I continue to hang my pants properly makes me an optimist, which seems like a good thing to be.
“Optimists cope better with adversity than do pessimists because they are less likely to dwell on their problems,” three scholars wrote for the American Psychological Assn. after reviewing the literature on the subject. In particular, they referred to a study of Parkinson’s patients that found that the optimists needed less help with routine activities of daily living -- like hanging up pants, I suppose.
There is realistic, look-the future-in-the-face kind of hope, and there is Pollyannish hope. Mine is strictly the first type, possibly to a fault. I have abandoned hope that medical science will deliver the cure that it’s been promising just around the corner ever since my diagnosis. Researchers still don’t know the exact cause of the disease or the mechanism by which it methodically kills certain brain cells. In the United States, a political battle has deprived them of federal support for research with new embryonic stem cells, perhaps the most promising potential therapy. Considering these obstacles, I’ve long since given up on a cure in time to do me any good.
Nor do I even expect to feel better than I do now. I’ll be surprised if anything comes along that is more effective than my operation. The year of my surgery, 2004, was the first in 15 in which I felt better at the end than the beginning. It will probably also be the last, because the operation did far more good than anything else now available or, as far as I know, close to being available.
Electrodes implanted deep in my brain and wired under the skin to batteries in my chest disrupt the circuits that cause many of Parkinson’s familiar movement disorders, including tremors. But the electricity also interferes with parts of my brain that affect my ability to walk properly. And there is no way the operation, misleadingly called deep brain stimulation, can alleviate Parkinson’s non-motor symptoms, which range from depression and dementia, which I don’t have (at least I don’t think so), to incontinence and low blood pressure, which I do have (mildly).
Hope, for me, is a state of mind, not focused on a particular prospect but rather attached to something more amorphous, less definable. My neurologist, Stephen G. Reich of the University of Maryland medical school, puts it nicely. “Hope,” he says, “gets us out of bed in the morning: hope that we’ll accomplish something great at work, hope that we’ll see our kids do something cute or clever, hope that we won’t get into a car crash.”
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CIRCUMSTANCES can nourish hope.
A supportive family (which I have) is a big help. It’s not only that my wife and three kids instinctively treat me like an ordinary person and not like a cripple. It’s also that I don’t want to let them down by succumbing to my disease and becoming a patient instead of a husband and father.
In much the same way, close friends make a difference -- friends like my college roommate of many years ago, who drove from Toronto to Cleveland to be there for my surgery.
An engrossing job (which I also have) makes life a lot easier too. Being a reporter is a constant education, and the Los Angeles Times has provided enormous support. Within six months of my diagnosis the newspaper tossed the dice and sent me to report on the European economy from Brussels, where I enjoyed the best three professional years of my life.
Religious faith (which I lack) also makes hope easier to sustain. Here I have to accept the testimony of others, of families like that of Brad and Gloria Christie, whose 13-year-old son, Luke, has spinal muscular atrophy, which causes progressive muscular weakness.
“The original diagnosis wasn’t as hard on us as it might have been because we’re very strong in our Christian faith,” says Brad Christie, an English professor at South Carolina’s Erskine College, which was founded by the Associate Reformed Presbyterian Church.
“Religion has been a great comfort,” says Gloria Christie. “God has a plan for us and for Luke, and prayer helps us understand it.”
Luke had surgery last year to correct curvature of the spine. Elders from the Christies’ church went to their house to pray that the surgery succeed, which it did.
Do prayers make a difference?
A Harvard review of studies of heart bypass patients found more postoperative complications among those who were the subject of others’ prayers than among those who were not. And a review of the literature by three psychologists found “no scientifically discernible effect” of prayer by others on medical outcomes.
But wait. In a similar review, four Virginia researchers concluded that prayer and other forms of religious intervention alleviated arthritis pain and improved success rates for in vitro fertilization.
“Patients who are hopeful, largely because of their religious faith and their trust in the physician, have a more rapid return to health and a higher rate of survival,” writes Harvard Dr. Jerome Groopman in “The Anatomy of Hope,” his reflections on a career of studying such deadly diseases as cancer and AIDS -- and patients’ ways of coping with them.
And if religious faith can have this kind of impact, how about a strong family, good friends and an engrossing job: in short, a life worth hanging onto? Science can at least tell us that a more hopeful personality translates into a better adaptation to chronic, degenerative disease. Even if optimism cannot alleviate symptoms, it can help people deal with them.
“Hope tempers pain, and as we sense less pain, that feeling of hope expands, which further reduces pain,” Groopman writes.
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FOR me, the routine activities of daily living, like hanging up my pants, are becoming less routine. I can no longer shave with a blade; I’m not ready to die of a slit throat. I used to be able to get in and out of the bathroom in the morning -- showered and shaved, with teeth brushed and hair combed -- in 15 minutes. Now it takes half an hour.
If that’s as bad as it gets, I won’t complain too loudly. Just in my own office of 40 or 50 people, fate has dealt more harshly with others.
One colleague, almost 30 years younger, has lost some of his eyesight to macular degeneration. A contemporary of mine died of a brain tumor about 10 years ago.
Even more wrenching is watching your own child slowly die. This happened to one of our reporters shortly before I came here 23 years ago. His only daughter died a long, nasty death from cystic fibrosis two weeks short of her 15th birthday. It took such a toll on his family that the reporter, among the sweetest and most easygoing guys I know, split with his wife.
I count myself lucky that my three children -- a daughter, 25, and 21-year-old twins -- have hardly had anything worse than a bad cold. Will, one of the twins, was born without a soft spot in his skull, a condition known as craniosynostosis.
The danger was purely cosmetic -- his brain would have expanded only in the front and back, leaving him with a distinctly elongated head. The doctors recommended an operation in which they would create a soft spot by shaving away part of his skull.
They operated when Will was about a week old. When we saw him immediately afterward, he looked as pale as the white sheets on his hospital gurney. When the doctor slammed his hand on the mattress, Will scarcely flinched. His mother and I panicked. But the next morning he was alert, his big brown eyes bright enough to light up a dark room, and 21 years later we hardly ever think about it.
Five years later, when I was diagnosed with Parkinson’s at 46, Dr. Reich tried to reassure me that life did not end with the diagnosis. I remember blurting out, “Maybe so, but what will I be like when I’m 60?”
Now it’s 16 years later, and I’m still a functioning member of society. Will I be able to say the same in another 16 years?
I hope so.
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