A psychiatrist attempts to stay positive while facing her parents' and loved ones' premature deaths—ever reminding us that hope springs eternal.
Hope springs eternal
On March 19, 1987, the corner was turned. The FDA fast-tracked the approval of azidothymidine (AZT), the first drug to treat AIDS.6,7 AZT increased CD4 counts and, while the effects diminished over time and AZT was not a cure, the treatment brought hope by prolonging life. HIV/AIDS remained a fatal disease until nearly a decade later, when HAART (highly-active antiretroviral therapy) was developed and HIV/AIDS became a chronic disease that could be treated and managed.
Toward the end of the first AIDS decade, the 1980s, memory problems developed in my father and I was forced to confront my own feelings of hope vs. hopelessness.
At first, I felt hopeful. A few years earlier, in his early sixties, my father received a diagnosis of Lyme disease and Lyme hepatitis. Symptoms included memory problems and “mental fog”8 which were known to be sequelae of chronic Lyme disease. The consultant performing my father’s neuropsychological testing advised us to get a baseline test and a follow-up test. If the findings remained static, they could be the result of chronic, treated Lyme disease, and not progressive dementia.
I was very hopeful that year between tests. I fantasized that the findings from the first test would remain the same. “We can manage his minor memory problems as they are,” I thought. I was in healthy denial. Unfortunately, I was soon informed he had progressive dementia and this early diagnostic experience was to be the first crack in my edifice of hope.
The second crack came when I reviewed his treatments with his doctors. As a psychiatrist, I knew they had little to offer us. But there was always the hope that I missed something in my review of the literature. By this time, tau proteins and beta-amyloid were being implicated in the pathology of Alzheimer disease (AD),9 but, as I feared, there was no medical treatment for my father. He could not use tacrine (Cognex), which was toxic to the liver and later discontinued. I focused on social and behavioral interventions and the doctors focused on me—to prevent caregiver burnout, they said. I sought to prevent burnout by reminding myself: There could be a treatment around the corner.”
Then in 1996, the FDA approved donepezil (Aricept) for treating all stages of AD. The approval of donepezil reminded me of the approval of AZT for AIDS—a medication for prolonging but not arresting or curing the disease. Donepezil slowed decline by approximately six months.10
I was his caretaker for over 13 years. During that time rivastigmine (Exelon) and galantamine (Reminyl) were approved but offered little more than donepezil did. I am now primary caretaker for another loved one with dementia. But it is harder for me to say to myself: “There could be a treatment around the corner” because, according to the former director of the Office of Alzheimer Research at NIH, “Four decades of intense research and development (R&D) efforts have failed to yield any effective interventions for neurodegenerative diseases.”11 Sadly, one of the more promising drugs for AD recently failed in clinical trials.12
After a long practice, I have come to appreciate how little difference there is between ourselves and our patients. And, for all of us, there remains the one important struggle: to maintain hope.
Dr Woesner is Director of Medical Student Training at the Bronx Psychiatric Center in New York City. She is also Associate Clinical Professor, Department of Psychiatry and Behavioral Sciences, at the Albert Einstein College of Medicine, Montefiore Medical Center, Bronx, NY.
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