On 11th April, a few hundred people living with Parkinson’s—victims and their caregivers—gathered in a square across from the Palace of Westminster for, of all things, a singalong. Aimed at members of parliament on their way to the House of Commons, the repertoire featured a version of the disco hit “I Will Survive” accompanied by kazoos and rewritten as a light-hearted plea for more attention from the backlogged NHS: “At first when diagnosed we were petrified / My arm just wouldn’t swing, it hung limp by my side / I went to see a doctor, he said it’s very clear / What you have is Parkinson’s, I’ll see you in a year…”
In the decade or so since I was diagnosed, Parkinson’s has become the world’s fastest-growing neurological disease. Many neurologists argue that, although it is not communicable, like Covid or flu, Parkinson’s is so widespread that it qualifies as a pandemic. Some of that surge in reported cases is attributed to the ageing of my generation, the baby boomers, and some undoubtedly reflects the fact that doctors are now more likely to recognise the disease. Parkinson’s has joined the ranks of diseases that have a public profile, with celebrities, organised lobbies, fundraising campaigns and—a sure sign of an A-list malady—annual holidays designated to increase public awareness. (World Parkinson’s Day is, as you might have guessed, 11th April.)
When you know you’ve got it, it can seem as though Parkinson’s is everywhere—among family, friends, colleagues. Last year the White House, not altogether convincingly, insisted President Biden’s Parkinson’s-like affect was jet lag. Since I was diagnosed, in 2014, my younger brother has joined the club, and we strongly suspect that our father’s tremors and precarious balance, though he never discussed the subject with us, would today be recognised as obvious signs of PD.
Whether the disease is hereditary is not entirely clear. In the absence of a specific chromosomal culprit, experts hedge their bets by attributing Parkinson’s to a mix of genealogy, demographics and environmental factors. In May, a new study suggested a connection between Parkinson’s and a diet of ultraprocessed food.
Although the disease itself is not technically fatal, some of the ancillary effects—difficulty swallowing, serious falls, depression, infections and pneumonia—can have lethal consequences. The standard compromise, as in the obituary last year of Joseph Lelyveld, my mentor at the New York Times and the best man at my wedding, attributes death to “complications of Parkinson’s”.
My own Parkinson’s started with the distinctive tremor in my right hand and illegibly cramped handwriting, called micrographia, which constitutes an occupational handicap for someone whose job entails taking notes. My symptoms have advanced slowly: the shuffling gait, the wobbly balance, the loss of smell, a froggy timbre to my voice. I stumble, and occasionally I fall. (My most spectacular tumble was at the top of a crowded up escalator at JFK airport; the only injury was to my pride). I think of myself as slowed, but not, so far, disabled. I’ve cut back on driving in favour of Uber, but I travel a lot, sometimes on my own. (A rare advantage of my affliction is that I can preboard flights, claiming first dibs on the overhead storage.) I no longer run four miles a day, but I walk to a gym almost every day and have tried a variety of physical therapy regimes including yoga, boxing, singing and Pilates. I’ve given up wine but I still cook dinner most nights (only setting off the smoke alarm once!). Life with Parkinson’s is about compromises.
My scariest symptoms are cognitive: difficulty accessing memories or suddenly losing my train of thought. I find it a bit harder to follow a conversation or the plot of a novel. I’ve always tended to ruminate—a profile once observed that “Keller will never be accused of underthinking a problem”—but now I’m appreciably slower to decide things.
In July last year I went for a battery of tests at Stony Brook University Hospital on Long Island, New York. They included remembering lists of words, counting backwards by sevens and drawing a clock face displaying the time as 11.15am—similar to the cognitive tests that Donald Trump claims established him as a genius. I can make no such claims. The neuropsychologist characterised my condition as “mild neurocognitive disorder”. The tests rated my “verbal fluency” as “high average overall” but suggested “disproportionate compromise in attention/executive processes”.
The executive function is like the brain’s ringmaster, managing everyday tasks, making decisions. “An executive functioning [test] assessing problem-solving skills, cognitive flexibility, and reasoning, requiring the extrapolation of concepts based on examiner feedback, showed Mr Keller’s performance to be below average overall.” My examiner added, as a kind of consolation, that, whether because of good genes or a career working with words, I have a reservoir of brain power I can draw on when needed. “That is, the greater ‘cognitive reserve’ of individuals like Mr Keller allows them to continue to navigate daily life even in the presence of substantial decline from baseline abilities.”
For now, in other words, I can fake it.
One challenge of Parkinson’s is navigating a course between denial and dread. The journalist Michael Kinsley, determined not to be defined by the disease, kept his diagnosis secret for eight years. An admired editor and writer during the 1970s and 1980s heyday of feature magazines, Kinsley worried that potential employers would be wary of offering him work. He feared that the sympathy of friends could be awkward or infantilising. He was mortified when the hostess of a dinner party insisted on cutting up his meat for him.
“Having a chronic disease—or, more to the point, being known to have a chronic disease—automatically starts you on your expulsion from the club of the living,” he wrote in Old Age: A Beginner’s Guide, his droll 2016 memoir of life with Parkinson’s. He finally came out in a column in Time magazine when his symptoms had become hard to overlook. My brother, on the other hand, declined to talk on the record about our shared affliction because he doesn’t want to be a bore. “Don’t want to be one of those old codgers who focuses on his ailments,” he emailed.
I generally go for a strategy of off-handed disclosure. I casually acknowledge the shuffling walk, shaky hands and muted voice; I try to lower expectations and to draw on my aforementioned “cognitive reserve” to surpass them. So far, so good. Parkinson’s has not prevented me from launching and running a nonprofit newsroom focused on criminal justice, teaching writing seminars at Princeton and New York’s Sing Sing correctional facility, or publishing a short primer on American prisons. I have semi-retired to London, where I continue to report and write. But I’m not sure I would undertake any of those other projects as confidently today.
We don’t dwell too much on the future. If that’s just another form of denial, so be it
There is no denying that, absent a medical breakthrough, I probably face inexorable decline and an unpleasant death, at least as unpleasant for those around me as for myself. A friend whose partner died after a long descent into Parkinson’s recently took my wife aside to forewarn her of what to expect: a man immobilised, incontinent, drooling, blank-faced, barely able to speak or swallow, confused and afraid. The warning was genuine and well intentioned but not great for morale. It’s one thing to be prepared—to get your estate in order, make sure your home is not an obstacle course—and quite another to spend your remaining years in dread. So, we don’t dwell too much on the future. If that’s just another form of denial, so be it.
Since healthcare resources are finite, the search for funding to alleviate and, ideally, cure the disease is inevitably a competition, and showmanship helps. The leading luminary in this quest is probably the actor Michael J Fox, whose eponymous foundation has raised more than $2bn for Parkinson’s research, and who has published four bestselling memoirs that capture the trials and humiliations of the disease and the way it upends relationships.
In 2010, in what I think of as a pop-culture Parkinson’s debut, Fox incorporated the shakes and stiffness associated with the disease into his comic role as Louis Canning in the TV courtroom drama The Good Wife. He portrayed a crafty, cynical defence lawyer playing up his disease for the sympathy of the judge and jury. Among its many and disparate symptoms, Parkinson’s attacks your sense of balance and your sense of smell, but not, thankfully, your sense of humour. Although the ultimate destination is death, the decline is usually many years long and gradual, leaving time to scratch some items off your bucket list and room to hope for a cure.
April’s “Big Sing” outside parliament was organised by six friends—five journalists known for their work at the BBC and a former high court judge—who gather periodically in a Notting Hill pub to muse about living with the disease. They record their conversations for a podcast called Movers and Shakers, which is more fun than you’d expect of a programme about an incurable brain disease.
A few days after the Westminster songfest, I dropped into the Ladbroke Arms to eavesdrop as the Movers and Shakers recorded. Now in their third year, the friends crowd around a table of microphones in a backroom of the pub, usually joined by a guest or two. The topics may be sombre (an episode on legalising assisted suicide, currently a hot issue in parliament), intimate (a post-Parkinson’s sex life) or practical (pets, diet, how to get a good night’s sleep). They do updates on promising research and profiles of notable figures with the disease. Sometimes, as on the day I visited, they invite spouses to the microphone for a conversation that amounts to couples therapy: how Parkinson’s affects a relationship, the shifting balance of power and the burdens of dependency as the disease slowly, slowly does its damage.
The Movers and Shakers return often to the frustrating search for a cure.
Given that science can’t conclusively say what causes Parkinson’s it’s no surprise that the search for a cure has so far been a disappointment. For more than 50 years the standard treatment has been the same: daily doses of levodopa tablets, to replace dopamine, a neurotransmitter that is deficient in the brains of Parkinson’s patients. For most of us, levodopa helps control muscle freeze, tremors and other motor issues. A more invasive option, called deep brain stimulation, runs wires from holes drilled in the skull to a kind of pacemaker that uses electrical pulses to change some of the signals that control Parkinson’s symptoms. Several therapies described as promising are in clinical trials, including treatments based on embryonic stem cells, focused ultrasound, anti-inflammatory drugs and other approaches.
“The old joke is, the cure is always five years away,” Rory Cellan-Jones, a former BBC technology reporter and one of the Movers and Shakers, told me over (non-alcoholic) pints at the pub. “It was five years away when I was diagnosed, six years ago, and it’s still five years away.”
Perhaps even longer if Donald Trump succeeds in his campaign to slash funding for health research. In April, Wired reported that the Elon Musk chainsaw brigade had laid off at least 10 principal investigators at the National Institutes of Health, the main US government agency responsible for medical research, including a prize-winning neurologist working to discover the mechanics behind Parkinson’s.
Advocates like the Movers and Shakers suggest that the average age of Parkinson’s onset, about 60, and the slow course of the disease have been disadvantages in the competition for public attention and research dollars.
“You need someone who’s young and dying,” says Gillian Lacey-Solymar, a former BBC correspondent and the lyricist of the Parkinson’s anthem. “Then it goes to the forefront of the news.”
I instinctively wince at the mawkish notion of a Parkinson’s “community”: there are so many degrees of the disease that no two cases are exactly alike. But doctors I’ve encountered agree that staying socially active is as important as any medicine. And it struck me in the pub that afternoon that what sustains the Movers and Shakers and their followers, more than the quest for a cure, is the therapy of shared experience. Misery really does like company.
