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I stand on a busy street corner waiting for the light to change. It’s a beautiful spring day in Victoria. On one side, the inner harbour glitters brilliant and blue, while ahead the parliament buildings loom over a carpet of green lawn. Tulips are everywhere. Tulips in the ground and blossoms on the trees and not a cloud in the sky.
I am visiting the city to escape the gritty dregs of winter and to spend time with my mom who, at 96, is frail and bewildered, and living in a care facility. Recently widowed, I am awash in barely suppressed sorrow most of the time, but hours spent holding my beautiful mother’s hand and listening to Glenn Gould’s transcendent Goldberg Variations are working some sort of spiritual magic, as are the tulips and the ease of walking without winter boots or fear of falling.
A young man stops beside me at the crosswalk, turns to me and grins.
“I want to know what song is playing in your head,” he says.
Song in my head? I think. “What…?”
“I’ve been walking behind you,” he says. “You’ve had your arms going.”
“And your shoulders grooving …”
Oh dear, I think.
“No song,” I say.
I take a breath before continuing.
“I have Parkinson’s disease. That’s just how I walk.”
He looks aghast. I feel sorry for him, for his surprise and discomfort and wish I had thought to pretend that there was a song. I also want to laugh. This is an absurd situation and Parkinson’s is an absurd disease of bizarre symptoms … ridiculous symptoms. For example, if I don’t take enough medication, my left foot rolls over onto its outside edge and my big toe stands straight up, at right angles to the ball of my foot. The medical term for that contortion is dystonia but I call it my “toe erection.” I might think it funnier if it didn’t hurt so much.
I have a tremour all down my left side. My grandkids get a kick out of going for a ride on my lap when I am especially jumpy. They know to hold my hand to calm the shaking. Together we’ve made up words to the tune my cellphone plays when it’s time to take my medication.
“Grandma take your pills now,” we sing. “Grandma take your pills. Grandma take your pills now, pleeeeeeease.”
My left leg drags, even when I am medicated. I gave up downhill skiing when I stopped being able to get off the chair lift. When my neurons commanded: “Jump! Jump now!” The rest of me mumbled, “Duh, did you say something?” Protein interferes with my brain’s ability to absorb my medication and I am constantly adjusting what and when I eat to accommodate a rigid, pill-taking regimen.
The medication that allows me to walk, to write, to speak, to smile, to sit in a theatre or eat in a restaurant – to be in the world – causes an uncontrollable, dancelike movement called dyskinesia. A side effect? Hardly. It’s a full-on, front and centre, manifestation of the disease.
I no longer drive because the dyskinesia makes me jerk the steering wheel and Parkinson’s has also given me double vision.
After one tumble too many, I parked my bike, but haven’t given it away because I am hopeful that advances in treatment might restore some of the pieces of my old life. Being hopeful may seem as absurd as the disease itself, given that the gold standard in Parkinson’s treatment, levodopa, was discovered in the 1960s and remains virtually unchanged.
Many treatments have been explored and cures have been dangled in front of Parkinson’s patients and then yanked away, time and time again. There is, however, a proven surgical therapy, deep brain stimulation, not a cure but a mitigation of symptoms that can last up to 10 years. Think of it as a pacemaker for the brain and, even though it involves holes in the head and electrodes deep in one’s grey matter, it is the best hope for many of us living with Parkinson’s. It is my best hope.
In British Columbia, where I live, there is one neurosurgeon performing the procedure, a single doctor with a waiting list so long that referrals take over three years to be processed. I have been waiting several months longer than three years and just received a date for my initial consultation. If the neurosurgeon accepts me as a candidate for DBS surgery, I will wait another two to three years before entering the operating room, unless things change. That is five to six years of waiting while living with a neurodegenerative disease. Other provinces do better. Alberta, Saskatchewan and Ontario all come in with wait times less than a year. It seems absurd to me, this disparity within one country, and given British Columbia’s relative wealth among provinces.
My symptoms are almost all motor symptoms: tremour, gait, balance, rigidity and slowness of movement. Many “parkies” (a common nickname in the Parkinson community) are more troubled by their invisible symptoms, their non-motor experiences of the disease, and the symptoms that non-parkies (or “muggles” as one parkie friend calls them) find hardest to understand. Depression, apathy, anxiety and insomnia caused by deficits in essential neurotransmitters, mainly dopamine, but including many others, make self-care almost impossible for some and social isolation probable. Add to the list incontinence, drooling, narcolepsy, heat intolerance, emotional lability, hallucinations, cognitive impairment and it is no wonder we are a community vulnerable to the modern-day snake-oil vendors.
The science is solid and clear that exercise is the only therapy that improves both motor and non-motor outcomes. The evidence is mounting that it also delays the progress of the disease. The conundrum, the absurd piece, is that depression and apathy make benefiting from exercise impossible. It is not weakness of character but the disease itself robbing people of the motivation to get moving.
I am nine years post-diagnosis and have escaped the worst of the non-motor symptoms. So far. For that, and so much more, I am grateful. I do struggle with being visibly different; the disease forces me to confront my vanity. Perhaps that is not a bad thing. I live a life rich in family and friends and meaningful experiences. I know I am one of the lucky ones.
When I remember the young man on the corner I cannot help but smile.
“It’s okay,” I tell him as the light changes. “I love that you think I’ve got a song in my head.”
I choose to believe that, if you see me walking, it will look to you, too, like I have a song in my head, that it will look to you like I am dancing.
Leslie A Davidson lives in Revelstoke, B.C.