At one point, I became so frustrated that, without telling Vicki, I abruptly stopped taking the Zoloft. A good doctor is not necessarily a good or compliant patient. (Indeed, as we will see, though I was a goo doctor to my patients, during the onset of Parkinson's I was a terrible doctor to myself.) When, weeks later, I confided to Vicki that I had taken myself off the Zoloft, she was justifiably angry. She already felt that I had betrayed her trust, in the months before our marriage, when I had assured her that my fainting spells and other early warning signs of Parkinson's were under control and not serious. Winning back her trust was still a work in progress, and I had just dealt that work a setback. And quitting the Zoloft intensified my Parkinson's symptoms. It was a Catch-22, for Parkinson's symptoms themselves interfere with sexuality, and so do the medications used to treat it.
I resumed the Zoloft, and slowly, after much open and honest discussion, we regained some of our intimacy, though it has been inconsistent. But Parkinson's and the medications used to treat it continue to have profound effects and permeate every aspect of our lives.
I suspect that most neurologists who see Parkinson's patients see sexuality as incidental in the face of such a devastating disease, a bit like worrying about a cold in a patient with terminal lung cancer. But for the patient living with Parkinson's, the patient who has already lost so much, sexual intimacy can be especially meaningful and a vitally important quality-of-life issue. Ironically, in the 1990s, I served on the FDA panel that oversaw the approval of Viagra. Such drugs can play a critical role in giving back to Parkinson's patients—and to others who suffer from sexual dysfunction resulting from neurological disease—a part of their humanity.
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.