'I would just be too exhausted:' Post-stroke fatigue common and hidden

Senator Murray Sinclair suffered a mild stroke 10 years ago, while he was still serving as a justice in Manitoba. He got swift treatment, but says for weeks after even simple tasks left him exhausted.

It’s a hidden issue many stroke survivors experience, according to a new report.

Heart and Stroke released its 2017 report, Different strokes: recovery triumphs and challenges at any age, on Wednesday.

A stroke happens in about one in 10,000 adults under the age of 64, the group says.

Sinclair, who experienced his stroke in 2007 at the age of 56, recalls waking up feeling dizzy and fuzzy headed. He had trouble getting into his robes for court and found he was bumping into a desk and doorway. Typing with his left hand was also difficult. 

Sinclair chalked it up to lack of sleep.

After court, he called his family doctor in Winnipeg. The doctor performed a few co-ordination tests, immediately administered Aspirin and sent him to the emergency department where he was diagnosed, treated and released that night with medication and follow-up appointments arranged.

“For several weeks thereafter whenever I would do something, if I would just go for a walk or if I would go outside and try to cut the grass, which I couldn’t, I would just be too exhausted to finish a task. Or after I’d done a small task I’d just need to lay down or sit down,” he recalled in an interview.

“Even writing and reading were problematic for a while.”

‘Take better care’

To this day, Sinclair’s granddaughter, who was two-years-old at the time, talks about how fatigued he was when reading to her.

“Whenever my granddaughter would visit and then she’d go home, she would always tell my wife, ‘Now you take better care of Mooshim,’ that’s grandfather in our [Ojibwa] language, ‘so that he doesn’t always fall asleep when I’m here.’”

Accepting the sense of vulnerability and mortality that comes after a stroke was the biggest challenge, Sinclair said. He initially told himself and others the stroke was nothing to worry about.

“It was just kind of a flash in the pan kind of thing. I didn’t really take the long-term implications of it very seriously.”

Now his message to his family and all Canadians is the opposite: don’t ignore stroke prevention and recovery.

First, recognize if you have a family history of stroke. He’s lost his mother to a stroke when she was 25 and his paternal grandmother also had a stroke. His brother has also since died of one.

Reflecting on his work travelling with the Truth and Reconciliation Commission, Sinclair said he feels lucky that he was living in an urban area when he had a stroke and was able to access immediate neurological treatment, which can greatly improve chances of survival.

In more rural areas, stroke prevention services are more limited in scope compared with urban centres, Heart and Stroke said.

Sinclair now takes medications to control his blood pressure and cholesterol levels as well as blood thinners.  He’s made an effort to lose weight, monitor what he eats and keep physically fit.

Frustrating fatigue

About half of Canadians living with stroke have visible effects such as a weak arm or leg and need help with daily activities like eating and bathing.

Hidden effects such as post-stroke fatigue — feeling tired even after resting, is commonly reported, the report’s authors said.

The fatigue can last for months or years and does not seem to be related to the size, location or severity of the stroke

Post-stroke fatigue is very common, said Patrice Lindsay, director of Heart and Stroke in Toronto. She experienced it herself.

“It is very frustrating to experience post-stroke fatigue,” Lindsay said. “It can look like depression and in some cases it is misdiagnosed.”

The report’s authors also examined stroke in babies and children, young adults aged 18 to 45 and  challenges for stroke patients and their family members. 

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