Parkinson’s Disease: My Father’s Strength

His physical strength was his currency, now it’s his patience and forbearance.

On the afternoon before my college graduation in 1999, there was a ceremony for graduates who were getting department prizes. My father was a New York City tunnel worker (a “sandhog”) and at that time he was working on Roosevelt Island, a 20-minute drive from Barnard’s campus. He always showered before leaving the job site, and on that day he’d brought khakis, a freshly pressed shirt and tie and the new jacket my mother had gotten him for his 55th birthday. I remember what he was wearing because it was the first time I noticed him holding a handkerchief, which he used throughout the ceremony to dab the corners of his mouth. After, when we were discussing where to have dinner, I spotted a narrow river of saliva traveling down the side of his chin.

“Dad,” I said, pointing. As he wiped it away I felt a little ember of worry flare up in me, but about what, exactly, I wouldn’t have been able to say.

A year later, he was at work several hundred feet below ground when he slipped and fell on the curved bottom of the tunnel. He tore his rotator cuff and needed surgery, but we were relieved it wasn’t worse. He’d been a sandhog for 30 years at that point, and had his share of scars. When I was in grammar school he got caught between a screed used to level concrete and the platform from which the concrete was poured. He ended up getting “squeezed,” as he puts it. During that hospital visit, after looking at X-rays of his deeply bruised hips, the doctor asked when he’d broken his back. “Never,” he said, but the doctor insisted, pointing to a spot on the image that showed his spine had broken and healed.

“How does a person break his back and not remember?” my mother still asks when the story comes up. He always gives the same answer, which is that for some people it’s easy to break something without realizing. My mother and sisters and I love when he takes this position because it’s so ludicrous. Imagine!

His physical strength was his currency, and when he wasn’t working he kept busy around the house. I’d go home on a given weekend to find he’d built a deck, or had cut down a dead tree and dug the giant root out of the ground. Once, because it needed to be moved, he crouched under an ancient piano and lifted it on his back while my mother shouted “Willie! You’ll kill yourself!” My sisters and I clapped and cheered.

Only 56 when he hurt his shoulder and had to go on leave, my father expected to quickly recover and work well into his 60s, as many sandhogs do. But there were basic things he couldn’t do even three months after the surgery. He’d get one arm into his jacket while the empty sleeve flapped somewhere behind him. Straining to reach it, he’d turn around and around like a cat trying to catch its own tail. Sometimes he’d need help trying to bend his rigid arm. “It’s my bad shoulder,” he explained, but the doctor suspected something else.

He was told he had Parkinson’s disease, a progressive disease of the nervous system, at the end of 2000, just before Christmas. I met him and my mother at the hospital, and stood with my back to the wall as the neurologist had him walk back and forth along a short hallway, tap his feet from heel to toe, touch his fingertip to his nose. I thought it was a big waste of time until I noticed him struggling. The doctor pushed him at the shoulders — gently, but enough to raise my hackles — and then watched as he staggered. After, when we were seated in his office, the doctor told us he’d known it was Parkinson’s the instant he saw my father in the waiting room.

“The mask,” he said. “No expression on his face.”

“Are you sure?” I said. “I think that’s normal for him.” Everyone ignored me.

“It’s much better to know,” my mother said later, as we walked to the car. We studied my father to see if he agreed. I reminded them that the doctor had mentioned new research, treatment methods to slow the disease’s progress. My mother’s handbag was stuffed with pamphlets.

“Willie?” my mother ventured, and then burst into tears.

“I think we all need a cup of tea,” he said.

We braced ourselves for sudden change, but once he started a light dose of medication it was as if the clock had turned back. We exhaled, marveled at how a few little pills a day could make such a difference. He seemed younger, and we dared hope his case was mild. Then, as the years passed, we learned that though the drugs gave him a lead for a while, the disease always caught up. He’d be having an average day — he’d walk a few miles, tinker in the garage — and then, as he described it, he’d “fall off a cliff.” He focused on trying to recognize when he was approaching the cliff so he wouldn’t be left stranded somewhere far from home, unable to move.

Then there were the side effects of the medication. My father, to be sure, is not a talker. It’s not that he’s bad at communicating; it’s just that he uses silence as much as he uses words and most people are too impatient to hear what those silences are saying. So I shouldn’t have been surprised when I accompanied him to a checkup in 2008 and the doctor asked casually about the hallucinations. “Are you still seeing those men come into your room at night?”

“Yes.”

“How many?”

“Six, like always.”

“Anything else?”

“They wear hats now. And they keep their backs to me. I think they’re playing cards.”

“Anything else?”

“Sometimes that other man still tries to come in through the window.”

After leaving the appointment, we’d crossed the George Washington Bridge before either of us said anything.

“So,” I considered how to begin. “Does Mom know you see men come into your room at night?”

“Yes. I used to shout at them and she’d wake up.”

“Are you dreaming when it happens?”

“No. I’m awake.”

“O.K.”

“I know they’re not there to hurt me.

“O.K.”

“I know that now, so I don’t shout.”

But he did shout. In November 2010, when I was seven months pregnant with my second child, my husband, Marty, our son and I moved in with my parents for six weeks while we were waiting to close on our house. The first night we spent there, Marty and I bolted out of bed around 3 a.m. because my father was shouting at a volume I’d never heard him use in my life. “My name is William Keane!” he bellowed. “I come from Ireland!” He sounded afraid, defensive, as if this information might ward off someone or something that had mistaken him for someone else. I went into the family room where he now slept in a hospital bed — half expecting to find a stranger pointing a gun — and though his eyes were open he didn’t seem to notice me there. Then he quieted down, a prisoner to his body until the morning, when his first dose of medication would kick in. If he had an itch he wouldn’t be able to scratch it. If a fire broke out he might not be able to flee. Whoever or whatever was threatening him now was something only he could see.

I told my mother the next morning, expecting it to be big news, but without even turning from the counter she said that she’d meant to tell us about that.

Over the years my mother has tracked down every tool that might help him. She, more than any of us, has set her will against this disease, constantly searching for ways around it, getting frustrated when the doctors don’t do more, as if the cure for Parkinson’s is a secret they all know and are just too selfish to share. When we remind her that he’s actually doing as well as can be expected, she just doesn’t believe it. We consulted a neurologist who specializes in deep brain stimulation, a treatment where a pacemaker-like device is attached to the brain, but learned he’s not a good candidate. He has a special chair that can both recline flat and push him up to standing, grabbers on long poles to pick things off the floor, gadgets to help put on socks, shoes with elastic laces.

He’s had a few falls that I know of, and probably more that I don’t. When he can’t get his hands out in time he takes the brunt of the fall in his upper body, his face. It’s often difficult for him to eat, and one of my constant fears is that he’ll choke because the muscles of his throat fail him. But as his body gets worse he seems to grow more patient, more at peace. The doctor always asks if he tries to leave the house every day, and I was surprised to learn that a lot of people with Parkinson’s don’t bother trying to go out at all. There are some days when that’s all he does — try to leave the house — and if he fails all day he tries again the next. He’s never lost his temper about it.

This fall, my mother decided it was time to transform their narrow downstairs bathroom into a handicapped bathroom, everything wide and open enough for a wheelchair to roll into the shower and turn around. It was a huge project — the contractor had to move the sewage line — and several times my father asked why in the world they were going to the trouble, especially since my mother was so stressed about it, dragging home heavy samples of tile, trying to find the right sinks and toilets. We were all home for Thanksgiving when she spread an array of paint cards before us and said that although she liked cool colors, Dad liked earth tones so that’s what we should consider. “Dad,” I said, “have you ever said the phrase ‘earth tones’ in your life?” My sister laughed and my mother got upset, accused none of us of taking an interest.

He insisted once again that the current bathroom was fine, and Mom threw up her hands and shouted that a wheelchair won’t fit in the current bathroom.

“Why are we talking about wheelchairs?” he asked calmly. “I’m not in a wheelchair.”

“You’re not in a wheelchair yet,” she said. “What about five years from now?”

“Jesus, Mom,” I said. “Do you have to be so mean about it?”

And then, looking back and forth between them — him silent, her furious — I understood that only one of them believed he had five years left.

There are more than half a million people in the United States who have Parkinson’s disease. People don’t die of Parkinson’s, they die with Parkinson’s. They choke. They have a fatal fall. They grow weak and vulnerable to other illnesses.

“Maybe.”

A snow plow passed on the street. He wouldn’t be able to walk outside until the sidewalks were cleared of ice, but when he felt good he often stood at the open garage door for a while to breathe in the fresh air. It seemed to revive him.

“O.K.,” he said. “Remember to say I’ve been luckier than most people.”

Mary Beth Keane is the author of Fever: A Novel of Typhoid Mary.