Marni Jackson is a writer based in Toronto whose books include Pain: The Fifth Vital Sign and Don’t I Know You?
It started with the little finger on my right hand. I was walking through the Toronto Necropolis near my home in Cabbagetown, not thinking about my mortality at all but wishing the dead around me well, when I noticed a tremor in my baby finger. Nothing alarming, I thought; my mother and maternal grandmother were both shaky in their old age. They had, apparently, “essential tremor,” not to be confused with the multisymptom spectrum of Parkinson’s, a degenerative neurological disease in which the neurons in the substantia nigra, a part of the brain that normally produces dopamine, begin to die off.
Unpredictable. Progressive. Incurable.
Not good.
Parkinson’s also happens to be the fastest growing neurological disease in the world right now. But I didn’t seriously entertain the P-word until one evening months after that walk, when I noticed the newspaper in my hands trembling and quaking. I had also started to put my phone on speaker for calls, to avoid the cocktail shaker effect of holding it to my ear.
There were changes to my voice as well, a thinning out and hoarseness which I would learn is another Parkinson’s symptom. And one day my husband brought home some freesias, remarking on their intense perfume; I found them strangely scentless.
The spooky thing about Parkinson’s – apart from its rare but potential ability to trigger “compulsive gambling and hypersexuality,” something I could at least look forward to – is the fact that there are no clear markers for its diagnosis. No blood tests or telltale shadows on an MRI.
I simply booked an appointment with a neurologist who asked me to walk across his office as he observed my slow and slightly shambling gait. He then tested my strength and balance with a few push-pull manoeuvres. “Yes, I would say you have early Parkinson’s,” he casually pronounced.
Really? You’re sure? I asked. It didn’t help that my neurologist looks more like a genial halfback than a specialist in neurodegenerative disorders. “I am 50- to 60-per-cent sure you have Parkinson’s,” he replied.
Those seemed like semi-hopeful odds until I went home and fell into the clutches of the internet where I discovered several other symptoms I had that could also be attributed to Parkinson’s. Restless Leg Syndrome, for instance, sometimes keeps me awake at night, scissoring away. Normally I am quite boastful about my ability to sleep long and well. No longer!
Then there’s the matter of my ever-clumsier fine motor skills: the fumbling with cereal-box wrappers (fiendish) and my continuing war with jar lids. I am always asking my husband to open a “press and twist” pill bottle – or more like “presspresspress and curse.” Parkinson’s can affect a person’s handwriting too, making it smaller and more chaotic. The intimate brain-hand connection goes awry.
Vanity is also an issue. Once the diagnosis was confirmed, I felt I was becoming that old woman in the grocery store line-up who maddeningly gropes for change in her purse. I noted the new patience of my husband as he waited by the car door while I slooowwly emerged from the passenger seat, like a small animal exiting the birth canal. As I’m getting out of the car, I sometimes freeze for a moment in mid-exit. Moving becomes more effortful. Even taking a shower feels strangely complicated.
I began to use a cane for balance, although I call it a walking stick – something I used for hiking up minor mountains not so long ago. I now feel a sense of kinship toward others with compromised mobility, something I should have had in the first place. But I don’t fall (so far), and decades of yoga have kept my balance steady.
Then there’s the pain issue. Between 40 to 80 per cent of people with Parkinson’s will experience pain, often in the shoulders, the result of postural or gait problems. But in my case the pain might be a separate thing.
A few years ago I developed lower back pain and sciatica in my left leg, which became pretty disabling; standing at the sink or walking any distance was and remains very painful. Three blocks is a major expedition. I went to a hospital back clinic, had an MRI and was diagnosed with spinal stenosis, a narrowing of the spinal cord that can pinch nerves. The MRI was murky with arthritis but it did reveal a small cyst in my spine that could be pressing on the sciatic nerve and causing the red line of pain that radiates down my left leg.
Oh, and I have scoliosis, a curve in my spine I’ve had since adolescence. For a long time the only problem it caused was a bit of a tilt in the way I walked – until three years ago, when the sciatica flared up. It’s possible that the pain is linked to the stiffness and rigidity that comes with my new disease; I don’t know. I’ve gone through lots of treatments, including four unsuccessful steroid “nerve blocks.” Spinal surgery remains an option, but a risky one.
Luckily, my typing fingers work fine.
So here I am: 79 years old, with many colourful and debilitating symptoms, and now I have one word that might encompass them: Parkinson’s.
I do have lots of company. More than 110,000 Canadians have Parkinson’s disease, and every day 38 more are diagnosed. That rate will rapidly increase, thanks to the aging population and the growing prevalence of environmental toxins, which have been shown to contribute to the development of Parkinson’s. Even living within one mile of a golf course (heavy pesticide use) has been declared a risk.
The disease varies widely from person to person and there is a fascinating list of more than 40 symptoms related to the disorder, from a diminished sense of smell (check) to disordered sleep (check). My favourite symptom may be “apathy,” which is not to be confused with its sibling “lethargy.”
My least favourite statistic: up to 80 per cent of people with Parkinson’s will eventually develop dementia.
But as I close in on 80, the spectre of dementia might well be on my horizon anyway. Best not to dwell on it (while simultaneously researching the scary cost of assisted-care living). For now my cognition, such as it is, seems intact. My husband beats me at Wordle but not always and not by much. Nevertheless, every time I walk into another room and forget what I’m looking for, I feel a frisson.
Of course the first person I thought of when I was diagnosed was Michael J. Fox, whose groundbreaking foundation has poured millions into Parkinson’s research. He has done much to raise awareness and educate the public, but the search for a cure continues. Since 1970, the gold-standard treatment for Parkinson’s has involved some version of the dopamine-enhancing drug levodopa. These medications help manage the motor symptoms and muscle stiffness, but they don’t cure or halt the progression of the disease itself.
In the meantime I am reassured and even inspired by others living well with Parkinson’s. This year the poet Anne Carson published a witty essay in the London Review of Books about her own experience with the disease, called “Beware the man whose handwriting sways like a reed in the wind.”
It focused on the “degradation” of her handwriting, and what that reveals about the entangled connections between the hand and the brain. She pointed to the cursive handwriting in the lyrical paintings of Cy Twombly and the artist’s search for “a line that is not stupid.”
Her description of daily life with Parkinson’s struck a chord with me: “I brush my teeth with my right arm and right hand, where I have a tremor: the toothbrush therefore goes whamming up and down at a savage pace, colliding with lips and gums.” This is such a precise observation of how it feels to brush your teeth with Parkinson’s, a condition (Ms. Carson notes) once described by the Greek doctor Galen as a “revelry of limbs.”
It’s a mysterious and wily disease. A friend of mine with Parkinson’s has trouble putting on his jacket but still plays pickleball like a pro. I’m in touch with an astrophysicist who has found the right dosage of levodopa that allows him to go on cross-country ski vacations and maintain his very active life.
Another correspondent, a 69-year-old psychoanalyst living in Lisbon who has had Parkinson’s since 2019, finds that 400 milligrams of levodopa spaced in four doses, combined with daily 45-minute workouts with a trainer, keeps his symptoms manageable. He also practices the piano every day and sees a physiotherapist.
Each case of Parkinson’s is unique – and unpredictable. And yes, such an ideal “care team” can be expensive.
Still, I wonder. Is it going to take Parkinson’s to make me the last person over 60 to take up pickleball?
At first the psychological impact of my diagnosis was broad and blurry. I found it hard to wrap my head around it. Cognitively, I seemed to be okay, or at least I continued to function in my mildly ADHD fashion. But I felt a deep distraction as I fumbled toward an acceptance of this new life-changing reality.
It was hard to focus on writing, which is normally at the centre of my day. It took me months to sit down to write this, for instance. I just didn’t want to spell it out yet. Meanwhile my husband was taking over more of the grocery shopping and cooking to spare me the pain of being on my feet. I am grateful to him, but being so dependent was also hard to face.
Post-diagnosis, my mood was affected too. Fifty per cent of people with Parkinson’s will experience anxiety and/or depression; the diminishing supply of dopamine can directly affect mood. I have always had a shadow of depression; I am used to periods of low spirits. But in the weeks after my diagnosis I found it harder to connect with people.
I looked fine, and if I was sitting down I could talk to people without pain or too much shakiness. I was not visibly suffering. But inside I was becoming someone else, someone too preoccupied with managing my body and my symptoms to be as open to life as I want to be.
I hated the self-absorption this imposed. The only fun, pain-free part of my day was spending the evenings on the couch with my husband, disappearing into a movie or a Netflix series. But even then, a low, trembling current kept coursing through me, especially if the movie was suspenseful. The least amount of stress or excitement triggers tremors. Like a car idling at the curb, my body was never completely at rest.
Wait – the other fun part of my day, frankly, is coffee. Some studies suggest that coffee is good for Parkinson’s, delivering a little hit of dopamine and clearing the brain fog. I only drink a half a cup, at most; too much, and it amplifies the shakiness. But I’ll take some extra finger-flapping in exchange for 20 minutes of sparkly mental clarity. (I am at the 15-minute mark as I type this.) I have to say, that first inch of coffee is a window opening in my day.
It also helps with constipation, a common feature of Parkinson’s and also a frequent side effect of taking levodopa. I have mounted an ornate, multipronged campaign against constipation, and if I do every single thing, every single day, my regime works. (For the curious, this involves three kinds of magnesium supplements, an expensive and specially targeted probiotic, a handful of stewed prunes or sliced kiwis, daily stretching exercises and frequent bedtime Restoralax.)
Indeed, managing the constipation is like caring for a demanding pet. And now my algorithms are awash in ever more graphic ads for constipation cures. The poop emojis never let up! At this point I could probably set myself up on social media as an elder influencer, a Constipation Coach. But do I want that as the headline for my obit?
My daily antidepressant strategies are modest and non-pharmaceutical, yet reliable. Every morning I get dressed (important), make the bed (also key) and leave the house, perhaps with my walking stick but not always. Unless it’s icy underfoot, I will make my way around the corner to Riverdale Park. Notice the gardens. Remember to lift my gaze. Try to ignore the red line of pain that travels from my hip down my left leg and the numbness in two toes. I slowly progress to the first bench along the path. Say hello to the cows ruminating in the fields of Riverdale Farm. Then I sit on the bench and watch the posse of nannies with their charges as the children ride their scooters around the empty wading pool.
For 15 or 20 minutes I take in the morning light and other people. I’m acutely aware of being that elderly soul on a bench with a walking stick, a figure I scarcely noticed on my pre-Parkinson’s outings, back when I was zooming through life, ambulatory and distracted. Now I appreciate those other cane-wielders who make eye contact with me as they pass, or wish me good morning. On other days, my husband and I will drive down to a park on the shores of Lake Ontario, where the long view over the water to a wide horizon unkinks my mind. Our vision needs to stretch just like our legs.
If there is an upside to Parkinson’s, it is related to the slowness it imposes. You have no choice but to be in the moment, and to notice the world around you. It also amplifies a sense of mortality, which makes every small delight more treasurable. The new vulnerability that comes with Parkinson’s puts you on intimate terms with your body and your surroundings.
The Cabbagetown Boxing Club is in a community centre handily located in a laneway behind The Beer Store. I’ve lived in the neighbourhood for more than 20 years and never investigated it, until a friend told me about the gym on the second floor where they offer a program called Rock Steady Boxing, tailored to people with Parkinson’s disease. Created in a small gym in Indianapolis in 2006, the program is now available in many cities around the world, including Toronto. I imagine this was the same sort of workout Anne Carson described in her essay about living with Parkinson’s.
Boxing is a sport I could not have been less interested in. Why couldn’t it be badminton with those nice, light rackets? But if it’s good enough for Anne Carson, I thought, it’s good enough for me.
So on a Monday morning at 9 a.m., I walked into a room redolent of boxing history and decades of sweat. Trophies lined the window sills, photos of glowering boxers posing with raised gloves papered the walls, along with rules about gym etiquette (no “rude” playlists for instance). A handful of people – old, young, men, women – were quietly training, skipping rope or jabbing away at the big swaying bags that hang from the ceiling like sides of beef. Music, possibly ABBA, played in the background. One of the head coaches, a sharp-eyed, craggy-browed man named Johnny (of course) wore leather pads like catcher’s mitts on his hands as a young boxer pummelled away at them. Johnny looked as if he might have had a speaking part in the original Rocky.
This is no yoga/Pilates studio with an hour of pretend boxing added to the schedule; it is a serious boxing gym, one of the oldest and most storied in Toronto, where Olympic-level boxers have trained. It now generously makes room for people like me who will never get inside the ring. (Actually, I will be in the ring, I just won’t be hitting anyone.)
The twice-weekly classes are small and we have the undivided attention of two experienced and personable coaches, Chris Cook and Martin Szajer. Even though I am a 79-year-old woman who thinks an uppercut is a kind of steak, Chris and Martin teach me the elements of boxing as if one day I will actually be a boxer. Their attention to technique along with their patience and good humour make me feel temporarily ageless. I do not feel patronized; they’re our cornermen.
The program also emphasizes balance, flexibility and strength, not just the punching side of boxing, so it’s a comprehensive workout.
The weird thing about Parkinson’s is the fact that focused, intentional movement – like boxing, playing tennis or dancing – can temporarily vanquish the tremors and shakiness. My fork might tremble on the way to my mouth, but my arm is steady whenever I punch.
After warm-up exercises and some cardio on the stationary bikes, we put on our wraps, the long bandage-like ribbons that help protect the hands from injury, and head over to the speed bags. We flail away at these small, teardrop-shaped leather bags, trying to maintain a good rhythm. There’s also a little green ball on a stretchy cord that keeps snapping back in your face when you jab it. Then we put on the big gloves and tackle the hanging bags, which feel utterly unresponsive to my harmless flurry of punches. Still, it’s fun to jab and punch.
Then we might get into the boxing ring and pretend-spar with our watchful coaches, smashing away at their raised palms. “Hit me like I owe you money,” they like to say. Jab, punch, uppercut, left hook, jab again.
Boxing, I discover, is surprisingly mental. “It’s like chess,” Chris says. “You have to anticipate the other guy’s moves.”
Sparring completely engages mind and body; I forget myself (and my pain) as I try to remember the sequence of punches. And when I manage to hit the pads with some power it feels satisfying, like a good drive on the golf course, or even just slamming a well-made car door.
It’s always an effort for me to finish the 90-minute classes, but I leave the gym feeling energized and optimistic. My mood floats for several hours.
The theory is that for Parkinson’s, consistent exercise is better than a drug. Current scientific research now backs this up: High-intensity exercise three times a week has been shown to be as effective as medication for managing Parkinson’s symptoms and even slowing the progress of the disease. (I take the meds too.) Best of all, it’s a new and unexpected thrill at this age to be getting stronger, not weaker.
In my neighbourhood, there is an old woman who has become a role model for my daily park expeditions. Her back is bent at an acute angle as she walks. It is almost comical, like a witchy figure out of a child’s picture book. She uses a walker, and a caregiver often accompanies her, but they are usually chatting merrily when I run into them.
The old woman is always dressed in black with a black tuque and wears a long, white string of pearls, regardless of the season. The pearls sway like an elephant trunk as she walks. She has a beautiful, expressive face, and is so open and smiling in her daily peregrinations. Despite being bent like a paper clip her appetite for life is palpable. If our paths cross in the park, we exchange small talk about the weather, the leaves, the children on their scooters. “Keep walking,” she always urges me.
My heart lifts whenever I see her making her way through the park. If and when I graduate to a walker, I’m going to add a long string of pearls. But first I might invest in boxing shorts.
