From Respected Cardiologist to Parkinson's Patient
New memoir chronicles journey from doctor to Parkinson's patient.
June 25, 2008 -- Thomas Graboys seemed to have it all. He was a talented and well-respected cardiologist, on staff at Harvard Medical School and running a thriving private practice.
But at age 49, he was diagonsed with Parkinson's disease, and a progressive dementia marked by confusion, violent nightmares and hallucinations. In 2005, Graboys was forced to give up his practice.
Graboys says he still hopes to take care of others by sharing what he has learned during his ordeal. His book, "Life in the Balance," is a memoir of his journey from doctor to patient.
You can find more information at www.TomGraboys.com.
Click here to visit the National Parkinson Foundation's website.
Click here for the Lewy Body Dementia Association's website.
Click to visit the Lown Cardiovascular Center's website.
Read an excerpt of Graboys' memoir below.
Nothing is second nature to me any more. No task is too simple, no activity so routine that I can do it without forethought. Is the glass right side up, or will I pour orange juice all over the counter again? When I leave the kitchen to walk to the bedroom, how will I get there? At the party tonight, where will the stairs be, and how will I navigate them? Will I be able to join the conversation? Or will I be standing in a corner, nearly catatonic?
For social gatherings, I have what I call my cassettes: a repertoire of conversational riffs on various subjects that will allow me to enter the conversation and, with luck, appear to be a reasonable facsimile of the old Tom Graboys. Can I pull it off? Can I act the part and mask the reality of dementia? One of my goals in social situations is to have people go away saying, "You know, Tom seemed pretty good." It allays the anxieties of friends and colleagues when you look and sound good, even if they cannot fathom the effort it took to muster such a performance.
Without my cassettes, entering a group conversation is like trying to get on the freeway traveling at twenty miles an hour while the traffic is rushing by at seventy. Slowness, an all-encompassing mental and physical slowness, has descended upon me. It is not going to lift.
Holding on. Much of my life, today and every day, is about holding on to what I've got—or, more precisely, holding on to what is left. There is still happiness in my life: my wife, my children and grandchildren, music, and, now that I can no longer practice medicine, the time to explore new interests such as indoor cycling and writing. There are even days when the "old Tom" emerges, usually briefly, and I feel like my old self, only to awake the next day and come face-to-face once again with the reality of life with a progressive neurological disease.
For now, I still see the light; but on the other side of this knife-edge ridge I walk, there is darkness, so I hold on. I have discussed this with my wife and adult daughters. There is a point beyond which I do not wish to go. That is the day I can no longer control my bowels and my bladder, a common problem for patients with advanced Parkinson's disease. To me, this is the ultimate regression. I have been in too many hospital wards and nursing homes where patients with severe dementia are lying on the floor or sitting in their own urine and feces, oblivious to the world around them. I have seen the end of this road, and I won't go there.
I am determined not to let Parkinson's, which has stolen so much, steal my dignity. That is what I am really holding on to. Dignity. It's why I exercise, practice yoga, and play the drums. It's why I shave every day. It's why I dress well and make sure I look my best. As a cardiologist with a predominantly geriatric patient population, I often noted in my files when a patient started looking unkempt, a look that signaled that he had surrendered, been beaten down, or no longer cared enough to pull himself together. I no longer save my best clothes for special occasions.
Now, every day is a special occasion.
The daily struggle with Parkinson's disease, especially in this form, is relentless. There is no reprieve, and the future is uncertain. Even on the good days, Parkinson's lurks like an unwanted shadow. On the bad days, my frustration boils over into anger and despair.
In my case, Parkinson's is a twenty-four-hour-a-day affair, because the associated Lewy body disease brings forth vivid nightmares and violent sleep on a weekly basis, nightmares so realistic that I am likely to act them out. I have dreamed of being attacked and, in an effort to fight back, have inadvertently struck my wife, Vicki. This is extremely abhorrent and sorrowful to me, but it is part of the picture of our daily lives.
In the mornings when I wake, or when I stir from the midday nap that has become as essential to functioning as my medication, I lie entombed in my own body for ten or fifteen minutes. This paralysis of mind and body lasts until enough synapses can spring into action to allow me to move.
As a young intern and resident, and later as an attending cardiologist, I was accustomed to being summoned suddenly in the middle of the night. I could launch myself out of bed, get dressed, and perform at my intellectual peak within moments. I could make life-and-death decisions within seconds of a nighttime phone call. Today, I wait for thousands of tiny cellular engines to start themselves so I can rise from the bed and begin another day, trapped in a body that no longer fully responds to my will and subject to a mind that spins at 33 RPM in a 78 RPM world. Neurologic disarray affects every aspect of my life.
Physical deficits are only one part of my daily battle with Parkinson's. My interactions with people are marked by a slowness of thought (called bradykinesia) that is as embarrassing as it is frustrating. It's more than losing my train of thought, though that happens a hundred times a day or more; it's having the words in my head, but being unable to move them from the part of the brain where thoughts are formed to the part that controls speech. The neural pathways are disorganized, like some fantastically complex highway system with overpasses and intersections, on-ramps and exit ramps, all leading nowhere. A thought forms, it gets sent down the pike, only to get lost in some culde-sac where it spins like a whirling dervish. The train of thought in such cases isn't lost; I'm well aware of the thought; but I cannot maneuver it to the place in my brain that will allow communication. Sometimes the thoughts will finally spin out of the cul-de-sac and find expression; often, however, they simply spin themselves out like a spent whirlwind, never escaping. The halcyon days when I spoke eloquently and with great confidence are gone. As I said, nothing, not even speech, is second nature any more.
It is this dementia, this progressive loss of cognitive and intellectual functioning, that is the hardest symptom of my disease to live with and the hardest to accept. I can no longer balance a checkbook or calculate a restaurant tip. The concentration required for two hours of often-halting conversation leaves me weary. A veil descends, like a night canopy over a birdcage, and I need to nap to recharge my diminished synapses. Many Parkinson's patients will tell you that having Parkinson's is like having a switch in your head, a switch that is not in your control; a switch that can be flipped up and down once an hour or ten times in a minute. Sometimes I simply shut down and wait out the power outage.
I have lost large chunks of knowledge that have dropped away like a glacier cleaving huge chunks of ice into the sea. It's still hard for me to admit to having dementia, because there are times, wonderful moments of lucid, clear thought, when I feel intellectually intact. I try desperately to hold on to those moments, or hours, but inevitably they pass. Am I an intellectually intact person with bouts of dementia? Or am I a demented person with moments of lucidity?
Predictably, this cognitive decline has led to a loss of intellectual and social confidence. Initially, my social confidence was completely destroyed by Parkinson's. Because stress and a high volume of sensory input exacerbate the slowness of mind that frustrates me so, I resisted social occasions for a long time. But Vicki has rescued me from life as a recluse. She has always had an active social life with a wide circle of friends, and there are countless charitable functions on her calendar. Though social events are challenging on many levels, they force me to engage with the world, as difficult as that engagement can sometimes be.
When a friend of Vicki's recently graduated, as an older student, from Wellesley College, we were invited to a buffet dinner on Wellesley's magnificent campus. It was so crowded that you could hardly move, so noisy you could barely hear. My anxiety always spikes at such times. Sensory overload makes it harder to mask the symptoms of Parkinson's. The pressure to "perform" feels onerous and quickly becomes counterproductive. I couldn't muster the motor coordination to move food from the buffet table to my plate; conversation, for several reasons, was impossible. The verbal sparring, the quick give-and-take that is so much a part of daily life, no longer takes place on a level playing field for me. For one thing, Parkinson's interferes with voice modulation, so I often speak, involuntarily, in a near whisper. The volume of my voice is one indicator of how I am feeling: On my good days, it can be close to normal; when I'm struggling, it can be inaudible. Competing with the background noise at a party when my voice is faint is arduous, and I am often forced to lean in and speak inches from people's ears. Gradually, I have grown more comfortable explaining to people, even those I don't know, why I may be hard to hear and telling them to feel free to tell me if they can't hear me. The playing field is also tilted because I am keenly aware that I am often well off the pace of the palaver. I often drop fancy words like "palaver" into my conversation to prove I still have "it," that I am not an intellectual shipwreck. Words I once thought pretentious I now use deliberately in conversation, to compensate for the loss of intellectual firepower.
When we return home from these occasions, I am always eager for a debriefing from Vicki. "How was I?", I want to know. This is a part of holding on: I am relieved when the report is a good one—that I may have started slowly, but picked it up by evening's end. When I'm off, it's terribly discouraging. Because I am always on the alert for any sign of deterioration in my condition, when Vicki tells me that I seem confused, I am instantly thrown into a state of acute stress, wondering if this is the moment when I fall off, irrevocably, to the dark side of the ridgeline I walk. From years of experience listening carefully to patients and even listening between the lines for what my colleague Bernard Lown calls "the unarticulated ache," I have become quite astute at sensing anxiety in others. Often Vicki doesn't need to say anything: I know, just from looking at her, how the evening has gone.
Fifteen years ago, I taught a course at Harvard Medical School on heart disease and sexuality. Sexuality is a topic widely ignored by physicians for a variety of reasons, including the physician's discomfort with the subject. At the time, most cardiologists weren't even raising the issue of sexuality with their patients—yet almost every heart patient I saw would bring the subject up eventually, if I didn't. Most wanted to know if sexual activity was safe for them. And more often than not, my reply was that not only was it safe; it was necessary. The course of heart disease can be dramatically affected by stress and the strength of personal relationships. Patients in relationships filled with anger, resentment, and guilt are at greater risk than those in relationships that bring comfort, joy, and peace. For married patients, or those in a long-term relationship, a healthy sex life marked by intimacy and caring can impart a sense of wellbeing, reduce stress, and bring happiness.
The effect of Parkinson's on my own sexuality has been profound. But, similarly to heart disease cases, sexuality is the forgotten part of the Parkinson's discussion unless initiated by the patient. The issue of sex and Parkinson's is a complex one, in part because the medications used to treat the symptoms of Parkinson's, including the characteristic depression, can affect sexual function. Some antidepressants and other medications can cause impotence, for instance. It's an example of how, in diseases like Parkinson's, or Alzheimer's, or multiple sclerosis—diseases of the central nervous system—everything can affect everything else. It's like an ecosystem—a change in one niche can trigger changes throughout the system.
When Vicki and I first met, we were in our mid-fifties and enjoyed an active sex life that brought great intimacy and closeness to our marriage. After my Parkinson's diagnosis, various medications were prescribed in a search for a combination that would bring my symptoms under control. As a physician, I was well aware of the complexity of "polypharmacy." I frequently saw patients on multiple medications for the treatment of multiple ailments, often with inadequate consideration given to how the individual medications would interact. At its worst, polypharmacy with inadequate consideration of drug interactions can be life-threatening. It took some experimentation until I responded favorably, but Zoloft, prescribed for depression, seriously depressed our sex life.
Every day, something happens—some event large or small— that triggers my anger at what has happened to me. The anger, too, is pervasive. I am angry over my losses, angry about the terrible pain and anxiety my illness has introduced into the lives of my wife and daughters, angry at the loss of much of my sexuality, angry that my young grandchildren will never know "Pops" without dementia, angry that it takes me twenty minutes to change a lightbulb, angry that the disease has ripped apart the fabric of my life, and angry at being dependent. Parkinson's has foisted on me a dependence on Vicki that I resent, but one that has become absolutely necessary. Every day, she anticipates my needs even as she struggles with her own fears about what might lie just ahead.
Yet, though I chafe at my dependence, I know that I am far healthier for having Vicki in my life. Her own vigilance eases the road I travel. When I flew to California alone to visit my daughter a few months ago, I was filled with anxiety about the logistics I would have to manage. The ticket counter, the hustle and bustle of the airport, the security line, the boarding process—it all seemed overwhelming. When I travel with Vicki, I know it will all be taken care of, from the packing of my suitcase, to the car, to the seat assignment. It's a double-edged sword, of course. I am dependent. I am face-to-face with how I am compromised with Parkinson's at times like that. Yet having someone tend to all these details removes a major source of stress.
And Vicki isn't the only one. People are forever helping me in small ways—making things easier for me is how people respond to my illness, helping me as I fumble to put on a seat belt, for instance, or as I try to slip my feet into the foot straps on an indoor spin bike.
Every day, I take my own measure: Is it getting worse? What will the future bring? Can I hold on? Can I live my life with the current level of dementia? How much loss can I accept? When these questions threaten to take hold of me, I use yoga discipline and literally try to move them aside; for the questions are unanswerable, the answers unknowable.
After the existential questions, the one that persists most cloyingly is whether this disease has taken from me the last remnants of being a physician. Throughout my adult life, my identity has been inextricably linked with being a doctor, a caregiver, a healer. Today, my stethoscope, the accoutrement that more than any other identified me as a physician, is gathering dust, and I know I will never wear it again. Unable to attend to patients, I had to ask whether holding on—by keeping current with the major journals, attending grand rounds, or appearing at hospital meetings—made sense. Even sitting still, a task made difficult by muscle cramps brought on by Parkinson's, was making it impossible to sit through grand rounds and meetings. Besides, would I merely be clinging to my unrecoverable past, a sad shadow of my former self? Did I have anything left to contribute? Am I a real doctor any more? At times, I feel guilty that I can no longer care for the thousands of patients who were depending on me. Accepting that I can no longer practice puts me face-to-face with the reality of who I am now.
Nearly every day, I see—or talk by phone with—friends, family, and colleagues who ask, "How are you doing, Tom?" They mean well, of course. These are people with hopes for me, and they want me to know that they care. But each time the question is asked, I am reminded of how much has been lost. What can I say to this question? "Fine," is my usual reply, but I am not fine. I would rather find out how they are, how their kids are, what's happening in their lives. I want them to see that Parkinson's has not made me self-absorbed. I want the conversation to show them that I took a huge neurological hit and that I'm still standing. But the normality that almost all people with a serious illness crave is forever beyond my reach.
To hold on, to try to maintain the status quo, I constantly monitor myself for signs of decline. But I am hardly passive, and I do not accept the inevitability of further decline, even though I know, intellectually, that it is likely. I believe that I can at least slow the pace as long as I don't surrender, and writing this book was one way of not surrendering. Though I could not write it without help, the intellectual engagement required by the process was a way of exercising mental muscles. To keep my body fit, I exercise regularly. Spinning classes have boosted my energy and my sense of well-being, as has yoga. And though I deeply regret no longer being able to practice medicine, I now have more time to focus on my own well-being.
Despite the myriad symptoms and problems that I have to struggle with every day, I am optimistic that I can keep my situation stable. I believe this because I have to believe it. I have to believe that tomorrow can be as good as today. That is the most that I hope for.
Reprinted with permission of Sterling Publishing Co., Inc., from Life in the Balance by Thomas Graboys, M.D. with Peter Zheutlin. Copyright © 2007 by Thomas Graboys and Peter Zheutlin.
