John Shonewille
John Schonewille's swallowing disorder can make it difficult and even dangerous to eat and drink regular foods and beverages. (Photo: Tim Fraser/UHN-KITE Studio)

By Wendy Haaf

After a year of living with a tube that delivered food directly to his stomach, John Schonewille, then 66, had begun to despair that he might never be able to enjoy the everyday pleasure of eating again.

Robbed of his ability to swallow by late complications of a stroke, John had faithfully carried out rehabilitation exercises prescribed by a speech-language pathologist (SLP), but when he tried eating again, food particles ended up in his lungs, causing pneumonia.

Faced with the prospect of remaining permanently dependent on a feeding tube, "my life had no hope," he recalls.

John, who now lives in Haliburton, is among the estimated 10 per cent to 13 per cent of Canadians over age 45 with swallowing difficulties, known medically as dysphagia.

The process of swallowing requires a complex combination of nerves, muscles and parts of the brain to work together. When just one element doesn't function properly – due to anything from a stroke to cancer to multiple sclerosis – a person with dysphagia might choke on foods and liquids, and in some cases, might even be unable to swallow their own saliva.

Desperate, John's husband, Harry Lewis, reached out to their SLP, Susan Watt, who recommended they see Prof. Catriona Steele, a Senior Scientist and Director of the Swallowing Rehabilitation Research Laboratory at UHN's KITE Research Institute, who is also an SLP.

Dissatisfaction with dated tools

According to Prof. Steele, John's situation isn't unique.

"The unfortunate thing is that there is very little therapy available for people with swallowing impairment in Ontario, but really, anywhere," she notes. "And we don't have a lot of good data to say which therapies work and which don't work."

With repeated testing, Prof. Steele finally discovered the ring-shaped muscle that's supposed to relax when food or liquid approaches was staying stubbornly closed. Only by turning his head just the right way and doing a maneuver called an "effortful swallow" could John make the muscle open, and at first only briefly before he tired.

In recent years, Prof. Steele has quietly transformed the assessment and treatment of swallowing disorders.

Her interest in the field was sparked while at her first job as the only SLP for 600 residents at Baycrest's Home for the Aged, an academic health sciences centre for older adults in north Toronto, between 1991 and 1994. Swallowing problems were common among the aging population there, as older people are more likely to develop the condition, and she saw the enormous impact not being able to eat or drink normally could have on people's lives.

"Food and drink are central to the way that we live our lives," Prof. Steele says. "I can't think of a rite of passage that doesn't involve eating together or drinking together."

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