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.