Is Silence Really Golden?: Confronting the unspoken truth of my father's Parkinson's disease.

Neurology Now
October-november 2012
Volume 8(5)
p 40
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I first noticed my father's tremor when I came home for vacation during my first year of medical school. While we were driving back to the house from the airport, I saw something moving in the periphery of my vision. My father was sitting in the passenger seat, his left hand shaking. He saw me glancing at it and explained that the tremor had started a few weeks ago. As a physician himself, he came up with some fancy explanations for the cause. None of them included Parkinson's disease (PD).

As the years went by, I noticed subtle changes in him. Every few months when I came home from school, he seemed a little different. His gait deteriorated, becoming more slowed and shuffled, and his posture more stooped. It was obvious that his sleeping patterns had become disrupted: I would find him napping throughout the day; at night, he would often wake up from vivid nightmares.

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Even his face began to change—it seemed less expressive and animated. His speech grew softer, he mumbled, and he had to repeat himself often. In a matter of a few years, my father had transformed into a different person, a man with textbook PD symptoms. On the outside, he no longer resembled the tall, strong, bold man I knew to be my dad. But inside, his mind and his heart remained the same.

My father and I never spoke about his condition. We continued on with life as if nothing had changed. Then one summer, our family went on a Caribbean cruise. We were celebrating the end of my first year of residency as a doctor. On the last night aboard the ship, the seas were rough and the boat swayed from side to side. My father had great difficulty maintaining his balance. He and I sat down at a table by ourselves to chat. He became silent all of a sudden, looked down at the floor, and said, “I'm sure you've noticed how I've changed over the past few years. I have Parkinson's disease.”

He told me that he had been seeing a neurologist for some time and was taking medication for his symptoms. We both began to cry. He said he never thought that anything like this could happen to him since he was always so healthy. His entire family had no history of any chronic medical conditions either.

How could he think I didn't know he had PD? At that time, I was already a neurology resident! I hugged him and said I recognized the signs of his disease for a long time, but that I never mentioned anything because I wanted to wait until he was ready to tell me. I asked him, “You have had some idea why I chose to be a neurologist, right?”

Now that I look back, I'm not sure how I feel about the decision to maintain our silence. In our case, it worked out, mostly because there were clues that led me to believe he was seeking medical advice and treatment (such as office visit reminders on the answering machine and regular trips to the pharmacy). Had I even the slightest idea that he was neglecting his condition, I'm sure I would have spoken up earlier.

Now that I have seen and treated many people faced with chronic illness, I truly feel it is better not to go through it alone. Nothing can replace the love and support of those who care about you; fears about becoming a “burden” to others should be set aside. It is now a habit of mine to encourage patients to share information about their health—the good and the bad—with their families and to work together on making important decisions on things like treatment options as well as those of other aspects of healthcare like living wills (advanced directives).

After my experiences over these past years, I can say that this is my professional and personal advice.

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