One couple’s journey
‘It’s alarming for people who don’t know a lot about the disease to understand that people as young as in their 50s are being diagnosed.’
Oct 27, 2019 • October 28, 2019
[Excerpts] When Tony Wanless walks into the Hampton Inn & Suites hotel in Vancouver, he gets to forget that he has Alzheimer’s and remember who he really is: a gregarious, self-deprecating, engaged human being with an appetite for conversation, an aptitude for quips and an independent streak.
Wanless is here as a member of Paul’s Club, a social group for people with young-onset Alzheimer’s. Paul’s Club meets at the hotel Tuesday, Wednesday and Thursday for social activities, for lunch and for forgetting.
For Paul’s Club members, forgetting is an accident, but for founder Nita Levy, forgetting is a gift she gives. “They leave their diagnosis at the door,” says Levy.
Most club members arrive on a HandyDart bus. Wanless, a former Province columnist, prefers a taxi. He’s not quite ready for the HandyDart, but he doesn’t like taking the SkyTrain during rush hour.
“It’s too confusing,” he explains.
Wanless pulls out the dog tags he wears around his neck. The tags are stamped with his name, a contact number and the word he hoped he’d never hear: Alzheimer’s.
“It’s embarrassing, but I need it. Sometimes I’m just mystified as to what I’m doing,” he explains.
Wanless laughs a lot about his predicament — the way his brain “short-circuits.” Like the wires don’t connect. He estimates the short circuits happen about four times a day.
“It’s unpredictable, that’s the problem,” explains Wanless. “You don’t know when it’s going to cut out.”
He might find himself standing in front of a door, holding a key in his hand and wondering what the heck it’s for. If he takes his time, he can figure things out.
Wanless tries to be patient with himself — something that doesn’t come naturally. “I have to be very, very …”
He searches for the word, but nothing comes. He smiles and shrugs it off.
Words were Wanless’s stock in trade — they made him money, built his reputation and provided for his family.
They are still his refuge. “I love to read,” says Wanless. Then he cracks: “I just can’t remember what I read.”
Wanless, 70, along with his wife, author June Hutton, has just finished writing a memoir entitled Four Umbrellas about dealing with his dementia. The project was conceived during a walk on the beach in 2017, shortly before Wanless was diagnosed with Alzheimer’s, but after his cognitive impairment was becoming clear.
“We wanted this to be from Tony’s perspective, while he still had insight into the experience,” says Hutton.
Going public is the last thing most dementia patients want to do.
According to Krista Frazee of the Alzheimer Society of B.C., fear of the disease can lead to isolation.
“There is a lot of stigma and misunderstanding around all dementias, and it’s alarming for people who don’t know a lot about the disease to understand that people as young as in their 50s are being diagnosed,” says Frazee.
Early Alzheimer’s
Wanless is among approximately three per cent of Canadians who have “young onset” Alzheimer’s.
The term applies to those who receive a diagnosis of Alzheimer’s or dementia when they are younger than 65. Like many with young-onset, Wanless was diagnosed after the age of 65, but the diagnosis was retroactive.
Dr. Robin Hsiung, associate professor in the division of neurology at the University of B.C., says the majority of patients diagnosed with young-onset have a clear family history of the disease affecting multiple generations, and a genetic component.
According to the Alzheimer’s Association of Canada, 564,000 Canadians are living with some form of dementia. Seventy thousand of those live in B.C., and about 5,000 of those are under the age of 65.
Journey to diagnosis
Research published in the journal Lancet Neurology shows that among young-onset Alzheimer’s patients who carry at least one of the genetic markers, the brain plaques that are a hallmark of Alzheimer’s appear up to 15 years before memory problems become evident.
Hutton says the couple can now look back nearly 20 years and see changes in Wanless’s behaviour that may have been early signals that his brain was changing.
Click on the blue link to access the article. Learning to forget: From Alzheimer’s to acceptance