Living with Parkinson’s

As the disease tried to strip him of his dignity, her father fought back with his inimitable sense of humour

One of my enduring memories of my father’s illness is of his morning walk. Glancing out of my kitchen window, I would see him shuffling along with an attendant’s support, and my heart would contract. He had been a tea planter, walking 10 miles effortlessly in a day. To see him reduced to a doddering, inarticulate wreck decades in advance of his time was not something I ever got used to.

In another haunting memory, my son, then 10 or 11, newly enamoured of the daily newspaper, runs toward me excitedly, waving a headline and shouting, “Look, Mumma! New cure for Parkinson’s!” I would sigh and hug him. We had learnt long ago that Parkinson’s does not have a miracle cure. It is a disease that manifests in symptoms as unique to victims as their fingerprints. Tremor, rigidity and slowness come in varying degrees, compounded by other symptoms.

My father endured long bouts of acupuncture, then Ayurveda, to no effect. ‘Stereotactic’ surgery gave him temporary parallel vision. One eye flopped over. A photograph of him with an eye patch at my cousin’s wedding serves as a permanent reminder to apply caution in the matter of proselytising doctors.

In 2001, I watched in silence as a colleague was seduced by one of those newspaper headlines. He borrowed Rs 3 lakh for an operation to cure his father, determined that he wouldn’t suffer what his Parkinsonian uncle and aunt had: falls, broken bones, agonies while bedridden, and premature death. Tissue was implanted. In three months, he succumbed to multiple infections and went from bed straight to crematorium. The headline hadn’t clarified that a patient on immunosuppressants would require a sterile environment.

My dad was surrounded by knowledgeable care. The Parkinson’s Disease Society publishes research results cautiously. It offers handy tips on coping with dignity while adapting to the clumsy stranger gradually invading your body. His medication and physiotherapy was monitored by his most devoted attendant, my mother. She was a no-nonsense matron, setting impossibly high quality standards for the ones we hired. My dad, once a sportsman, conveniently knew how to tuck and roll, minimising damage when he fell. So in 26 years, he broke only one bone.

When he lay in hospital, adapting to a synthetic-blended femur ball, my mother was away, nursing traumas of her own. My brother and I, our spouses and children, visited, gushing with affection, to which he responded well, being a man who was easy to please.

Fifteen years into the disease, conversation was a chore. By the time he worked up a few words, the other person would have given up. Even with those who empathised, it was a protracted process.

He passed time playing chess. To move a piece, he’d recruit his opponent’s help, relaying instructions through cryptic signals of eye and head. One day, as a lovely young physiotherapist manipulated his limbs and led him through breathing exercises, another young woman in a white coat peered around the door, scolding: “That’s my patient!”

His face expressionless (another symptom of Parkinson’s), he mouthed, in hoarse, gravelly tones: “Turf wars!”

I guffawed aloud, delighted as much with the joke as with his still-vibrant sense of humour. They turned their wary, uncomprehending eyes on me.

A consulting neurologist was scandalised that he was not on dopamine, the drug of choice for Parkinson’s. We explained, tentatively, that he was allergic. He insisted. My mother would have yelled back. The dopamine was administered. It caused pain, disruption and another three weeks in hospital. Bed sores followed. My mother, back now, dusted antiseptic powder and made sure he was turned every half hour. When he groaned in pain, she alternated kind caresses with stern orders to behave.

And she made sure that he ate all that we did—as his teeth gave way, she would grind each delicacy separately.

Nursing help was a fledgling industry. The schism between front-office sales and back-office service still makes me laugh. Promising angels of mercy, they sent louts off the street who slouched, scratched their bottoms, and reported, if at all, long after the night-shift helper—an angel of mercy, a woman—had left. One man arrived just in time to help me through a toilet crisis. He shook his head, muttering repeatedly, “Oh my God, what a nuisance!” and luckily slipped away, without notice, before I slapped him. Even those with hospital experience would collect a tidy lumpsum after a few days and stay home to booze it up.

My father had been diagnosed at 50. He was 76 when he died last year. We sat with the body, reflecting. I said, “D’you think he’d have liked us to have an Irish wake?” “What’s that?” asked my daughter. “No idea,” I replied, “I think they stay up all night drinking and dancing.” “Oh,” she said, deadpan, “I thought that was called Friday night.” We turned to him, anticipating his characteristic half-smile, but he remained unresponsive.

When I was little, my father gave me stylish haircuts and the other plantation wives begged him to do the same for their daughters. “Can’t smack them if they fidget,” he explained, by way of polite refusal. My brother wept copiously when he told us about Oliver Twist, Sohrab and Rustom and others—while I reached for another cutlet, thinking, “Life is tough, get used to it, er, Portia.” He had a tuneful singing voice his grandchildren would never hear. We lived in the house on the hill, and he was lord of all we surveyed. Years later, when I visited with my kids, enthusiastically pointing out my old carved rosewood cupboard and an iron stove just like the one we’d seen in the kitchen of Henry VIII’s Hampton Court, people remembered him as the one who rode through the fields with our dog balancing coolly on pillion.

If we ever saw a quivering, dribbling, old man, my father would shudder and say, “Poor fellow! I hope I never get that way.” In later years, we never pre-empted disease; never made flippant statements about health.

By saying, expansively, “You can be anything you want,” he gave me freedom of choice, appreciation of competence and permission for situational nonconformity. At boarding school, I once received a letter containing something he’d liked and typed out, with a note saying I should read and pass it on to my brother: ‘Ten lessons for my sons.’ I suppose it was this, compounded by my brother’s unremitting generosity, which had me performing his cremation rites.

My father left me with a room of my own: a position from which, as Virginia Woolf eloquently observed, the political affiliations of one’s publisher are of little consequence. Embroiled recently in a compromising hospital procedure, I drew courage from the memory of his stoic bravery when faced repeatedly with worse. It struck me that his real legacy was the comprehension that disability cannot prevent anyone from living life to the full, with good humour, wit and dignity.

About The Author

Saaz Aggarwal