Robin Giles felt like she was missing a joke. It was Christmas morning in 2012, and she and her husband, Joël, were going through familiar traditions in their apartment in London, Ont. Later they’d go out to visit friends and family, but for now, it was just the two of them and their cats.
They opened their stockings first, and Robin was becoming more puzzled with each object she pulled out: They were utterly random. Jo had always been a thoughtful gift-giver. One year for Christmas, he gave Robin a beautiful set of bound Paddington Bear books, a nod to her childhood favourite. He’d often come home from work with an album for her, or a treasure he found at a used bookstore. Today, though, her stocking was filled with CDs she already owned, and a used container of hand cream, as though Jo had bought a store tester. She kept thinking there was a punchline or a theme she wasn’t seeing.
“I remember being really upset that Christmas—not because of the material stuff, but because it just felt weird,” Robin says. “It felt really weird.”
Something was wrong. This wasn’t Jo.
The dominantly inherited form of the disease is said to account for fewer than one per cent of Alzheimer’s cases—Jo’s specialist pegs it at much rarer than even that—and it’s caused by a mutation in one of three genes. While the more common type of Alzheimer’s carries a genetic risk component that means certain people are more likely to develop the disease, this genetic mutation is different: For an unlucky few like Jo, it’s a terrible guarantee. These people overproduce a protein called beta-amyloid, which accumulates in their brains as “plaques,” while another protein called tau twists itself into “tangles” inside the nerve cells. Together, they strangle neurons and eventually consume memory and ability as the brain withers.
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SLIPPING AWAY:Jo has Alzheimer's. He's 38