Bite-sized book offers window into author’s experiences with Parkinson’s disease
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Quebec author François Gravel was 65 when he finally learned that he had Parkinson’s Disease.
Long before that, Gravel was tossing a Frisbee at the cottage with a friend and realized his right hand would no longer do what he told it to. He did what any man would do — ignore it and hope it would go away.
But two years later, his gait had changed, he tired easily and napped every day, he walked more slowly and stooped over, his speech was quieter and his handwriting was a scrawl illegible even to him, which got tinier and tinier with each succeeding syllable.
So he went to the doctor.
Gravel taught economics before becoming an author specializing in children’s books. In 2019, he published Colonel Parkinson in Charge: A Wry Reflection on My Incurable Illness in French; it’s now published in English, translated by Shelley Pomerance and with a short postscript that doesn’t mention how the pandemic affected him.
Gravel imagines Parkinson’s as a military officer waging a campaign inside his brain, but despite his using Colonel Parkinson in the title, he brings up the analogy only a couple of more times.
Should you read this book if you’re coming to Parkinson’s from no knowledge base and want facts written in lay language?
Alas, no. Better you should get a copy of an outstanding illustrated book, Parkinson’s Disease: An Introductory Guide, co-written by Dr. Julius Anang at the St. Boniface Clinic and by Dr. Ron Postuma of McGill University. (It’s available through Parkinson Canada at firstname.lastname@example.org).
What Gravel has written is a series of very short, very brief ramblings about his experiences with his degenerative neurological disease. He touches upon so many topics, and that’s the flaw here — he merely touches upon them, like a thread of two or three tweets, and moves on. The book takes barely an hour to read.
Yes, he makes endearingly wry comments about how he’s learned to do things with his left hand that he used to do with his right, and how he blesses the inventor of the electric toothbrush.
Yes, he tells us all about Dr. James Parkinson, who died in 1824 and whose work was left unrecognized for many decades. Gravel cites his own research into understanding what Parkinson’s is in scientific terms (basically, the brain slowly loses its ability to send signals to the body, and there is no cure), lists a whole planet of scientists conducting research and looks into the Internet notion that Hitler and other monsters can attribute their evil to having Parkinson’s.
Gravel bounces from symptom to symptom, in chapters that sometimes take only a minute to read, never really emphasizing that Parkinson’s symptoms don’t come in tidy packages, nor do any two people get the same set of symptoms — and certainly not developing at the same speed.
He talks about freezing — “le freezing,” in French — in which the feet don’t get the order to move. Here’s the vacant face. The involuntary movements. He has active, violent dreams, waking up exhausted, but offers no evidence for his statement that people with Parkinson’s can remember their dreams and nightmares in detail. Can’t forget loss of taste and smell. More susceptible to dementia, check off that box.
Gravel casually tosses in the word Parky — a word that, if said aloud in English, can sound similar to a racial slur — but doesn’t say if he feels using it allows the disease to define him.
Gravel cites the valuable message several times that exercise is the best way to slow down the progress of Parkinson’s — Dr. Anang would tell you that, as would Parkinson’s expert Dr. Kieran Tuck of the Movement Disorders Clinic in Victoria.
Our author, however, talks in detail only about walking and running. He mentions boxing, worth a whole chapter by itself, yet we know not if he boxes. Indeed, we have nary a clue whether Gravel socializes with and works out formally and/or informally with other people with Parkinson’s.
Citing his earlier years when he suffered with depression, Gravel briefly addresses what his degenerative decline may be like and how long it could take.
Only once, in just one sentence, does Gravel say his wife may become his caregiver. And that is so, so loaded, and so immensely distressing.
Retired Free Press reporter Nick Martin was diagnosed with Parkinson’s Disease in November of 2019. He takes mild doses of meds and walks, hikes, boxes and referees soccer with a goal of 15,000 steps a day to slow down the disease’s progress.
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