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'You don't know how much you miss food until you lose it'
What Dorothy Dass missed most about life before her stroke was the joy of gathering around a table with loved ones to eat a meal. It was an important social part of her life and one she felt left out of because she could no longer swallow food or drink.
Dorothy's stroke affected the function of the muscles in her throat that open and close the passage of food and liquid. She had dysphagia – difficulty swallowing, and in her case, an inability to swallow (if she tried, the food or liquid would either go into her lungs or come back up). She couldn't even swallow her own saliva and sustain nutrition, liquids and medication through a feeding tube.
"You don't know how much you miss food until you lose it, "said Dorothy. "I love food. I love to cook. It was awful."
Multiple doctors and medical experts told Dorothy she would have a life of dysphagia even with rehab.
Dorothy meets Dr. Catriona Steele
Dorothy was admitted to Toronto Rehab's Stroke Rehab Service as an inpatient to relearn how to walk and to make some progress with her swallowing. Unfortunately, Dorothy's swallowing did not improve using the current standard therapy approaches. During this time, she heard about Toronto Rehab Senior Scientist Dr. Catriona Steele, an expert in dysphagia. Her speech-language pathologist helped connect Dorothy with Steele.
"We have a special interest in the lab in trying to solve difficult cases of dysphagia using intensive therapy," explained Steele. "Cases like Dorothy's provide us with an opportunity to build evidence of treatment outcomes, which is important pilot data for future research projects."
Dorothy began working with Steele in spring 2013 – almost a year after her stroke.
Steele's research team takes a unique approach to swallowing difficulties by tailoring treatment to each person's particular deficits. They use fluoroscopy – a diagnostic imaging tool that uses x-rays to provide real-time moving images of internal structures. In Dorothy's case they used it to view her throat and the biomechanics of the muscle contractions responsible for swallowing as she tried to drink and eat.
"Dorothy's prognosis was very poor," reflected Steele. "She had shown no improvement in her ability to swallow since her stroke. She was completely unable to swallow any food or liquid. It was expected that she would be on a feeding tube for life – never being able to eat or drink through her mouth again."
Dorothy's first fluoroscopy indicated that no food or liquid went down her throat – the muscles responsible for opening and closing important valves in the throat did not move at all. The research team worked with Dorothy four times a week for six weeks using targeted swallowing exercise to strengthen the swallowing muscles and help Dorothy relearn the coordinated actions involved in swallowing. The next fluoroscopy showed five per cent of the food and liquid went down. After six more weeks of therapy, she was up to 95 per cent. Today, 100 per cent goes down and she is back to eating her favourite foods again.
"We learned a lot from working with Dorothy that will inform our future work," said Steele. "For example, although she had difficulty with small sips of thin liquid, at one point we decided to allow her to try swallowing a larger mouthful – and to everyone's surprise and delight, it worked much better. That was a calculated risk that paid off."
A special meal at Oliver and Bonacini
The team decided that they would celebrate Dorothy's success by a meal at the restaurant of her choice. In June 2014, the research team, Dorothy and her children dined at Toronto's Oliver and Bonacini Restaurant. Chef Tom Riley prepared a delicious, multi-course, dysphagia-friendly meal, enjoyed by everyone in the group.
"'I'm able to eat again," said Dorothy. "Boy, it's a joy. Dr. Steele and her team gave me back a great part of my life."
Dorothy and her family have noticed her weight is back to a normal level, her nails and hair are healthy again and she is no longer depressed.
"Eating brings such pleasure to all of us in our everyday lives that we believe it is something worth fighting to regain," said Steele. "Dorothy will live on in our fond memories as one of the successful graduates in this venture."