Wanting to end the stigma and the stereotype that Alzheimer’s is an old person’s disease, a couple writes about their own journey into young-onset Alzheimer’s in their new book, Four Umbrellas. In this excerpt, they detail Tony’s diagnosis.
From as early as 2011, Tony had been growing increasingly forgetful and confused. The bright mind that had skipped a grade and excelled at Latin and algebra was failing him.
He had a fall and I suspected a stroke. There were computed tomography (CT) scans and other scans, all showing nothing. There were doctors’ appointments and memory tests, often with long stretches of time between them, which had led to the observation that he had mild cognitive impairment, or MCI.
MCI is often called a holding-pattern diagnosis, because it is a condition that can remain stable, can even improve, or can worsen. Time, we were told, would determine the outcome.
Tony set his sights on improvement and, as he would, read everything he could find on the brain. He worked hard, and often scored high on the Montreal Cognitive Assessment (MoCA). The assessment is comprised of simple tests that take about ten minutes and require the person to do such tasks as memorize five words, draw a clock face to show a certain time, and answer questions about current events. He once surprised his gerontologist with a near-perfect total of twenty-eight out of thirty. Scores of twenty-six and higher are considered normal.
Over time, though, Tony’s condition worsened, despite the prescription in 2015 of a drug called Aricept, to help improve his cognitive function. Had he had a stroke, after all? Or was it something else? There was the nagging question that had always been there, way in the back of my mind: Did he have dementia? I knew what the signs looked like. My mother had been diagnosed with Alzheimer’s several years before, and had been prescribed the same medication.
So was it actually Alzheimer’s? The terms possible, probable, and all indications are were offered to us; they swirled about us in a cloud of vague potential outcomes. At the same time as we struggled to find an answer to what was wrong, we, and especially I, endured the frustration of having friends, family, and casual observers comment that Tony seemed just fine.
We pushed to see a neurologist, hoping for a magnetic resonance imaging (MRI) scan and a definitive diagnosis. Eventually, in the spring of 2017, we got the appointment. Again, Tony’s MoCA score was not bad — twenty-six out of thirty. Further tests would be needed. After all, it could be normal aging.
I was appalled to hear that. Again, I had seen this before and there was nothing normal about it. Tony himself was growing concerned. Did no one believe us?
Finally, six months later, Tony received the MRI, though we would have to wait another six months, until January of 2018, for a day-long series of neuropsychological memory tests before we could get the combined results — something that we would receive several more months after that.
Now, at last, in April of 2018, we are getting those combined results. The Centre for Brain Health is home to UBC Hospital’s Alzheimer’s Clinic. As we pass through the doors, my eyes flick toward the sign and then back. Tony doesn’t remark. A doctor assisting the neurologist is there. Tony is given the MoCA again and is asked a few questions. I am asked a few questions as well, mostly about his memory. We then settle into chairs in the examination room, and wait. The neurologist appears and sits down with us to tell us that the MRI showed atrophy, or shrinkage, in the temporal lobe areas of the brain, as well as evidence of small vessel disease, or mini-strokes. Whether these mini-strokes had caused Tony’s fall in 2011 he can’t say, but in the end he stresses that it is the series of neuropsychological tests that are particularly telling.
In every category, Tony had done fairly well, except memory.
As the doctor talks, I recall movies and anecdotal accounts of the brilliant scientist who could still calculate intricate formulas but could not remember the day of the week or the time of year. In the documentary Spirit Unforgettable, John Mann, the lead singer of the band Spirit of the West and an Alzheimer’s patient, scored eighteen on the MoCA test. A neurologist interviewed in the film said words to the effect that a score that low leaves no doubt: That’s Alzheimer’s.
Right on cue, this doctor confirms that the tests plus the results of the MRI show that Tony is in the early stages of Alzheimer’s disease. He notes the positive effects of the drug Aricept on Tony’s memory, and says that in Tony’s case the progress of the disease is relatively slow but, even so, he had noticed a decline over the past year.
This doesn’t sink in until I see the new MoCA results. The score this time is just twenty out of thirty.
I stand up to thank the doctor, and stagger as though drunk.
We finally have our answer, and a firm one. The words probable and possible that we had been hearing all this time have vanished.
We step out into the sunshine; the air is fresh and cool. The blustery spring weather is no surprise in April, and yet it seems a cruel trick somehow, so full of promise, of renewal.
Tony turns to the left and I reach for his elbow and turn him to the right, to the bus stop.
We will go home and I will feed the cats and make dinner and he will fall asleep somewhere along the way, exhausted. Nothing has changed and yet everything has.
That’s a cliché, I know. It’s a good one.
Excerpt from Four Umbrellas by June Hutton and Tony Wanless © 2020. All rights reserved. Published by Dundurn Press Limited.
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