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About 10 per cent of Canadians suffer from a swallowing disorder. Dr. Rosemary Martino is hoping to change that.Thomas Bollmann

In 2006, Leslie Grightmire started having trouble swallowing. The Peterborough, Ont.-based ex-nurse couldn’t eat food the way she had before – she now had to ingest spoonfuls of applesauce to make it easier for those bites to go down. Coughing became constant, and she lost a lot of weight, because she started eating less. It’s a problem she now lives with every day. “If I look up to get something from a shelf, I will choke,” says Leslie, now age 63. “I can choke on breadcrumbs.”

The problem started after Leslie was diagnosed with tongue cancer and underwent radiation and surgery to remove a tumour. The radiation impacted her ability to swallow, she says. This kind of swallowing problem is known as dysphagia, and while it can occur after cancer treatments, it’s also common in people with brain diseases such as Parkinson’s disease, multiple sclerosis, Amyotrophic Lateral Sclerosis (ALS), stroke and dementia.

As many as 55 per cent of all stroke patients, for example, experience dysphagia, according to Canadian research, and it can lead to poor nutrition, choking risk, aspiration pneumonia and may require dependence on a feeding tube, severely limiting a person’s quality of life. The risk of dying goes up astronomically, too.

Leslie now cuts her food into tiny pieces and avoids pasta and rice, which can get stuck in her throat. She also stays close to her phone in case she has to call emergency.

“The dysphagia has changed everything,” says Leslie, who is now part of a group offering input to researchers on early intervention strategies.

Early identification key

Most of us take swallowing for granted, with the average person swallowing 600 times a day, according to The Canadian Association of Speech-Language Pathologists and Audiologists. It’s a process that involves 50 pairs of muscles and many nerves, so when things go wrong with this process the impact can be profound.

About 10 per cent of Canadians have a swallowing disorder. Warning signs include drooling, a person avoiding certain foods, taking more time to eat, choking frequently, coughing and weight loss. These can slowly occur over time, particularly in patients who aren’t aware of the severity of their swallowing problem.

There are many possible causes of dysphagia. Sometimes a throat-related disease can lead to swallowing issues. Other times, the cause is neurological, where nerves become impaired or the brain is damaged by a condition such as a stroke or Parkinson’s disease. Brain stem lesions caused by diseases such as ALS can also affect swallowing. Certain medications and cancer treatments can interfere with nerve function as well as impede production of saliva by the salivary glands – all critical to swallowing.

Identifying and treating a swallowing problem early is a priority for the Krembil Brain Institute’s Dr. Rosemary Martino, an affiliate scientist at Krembil and Canada Research Chair in Swallowing Disorders. In 2018, she secured $8.5 million U.S. in funding for the PRO-ACTIVE project, a study that will involve 1,000 patients in Toronto and six other cities across North America over the next five years.

The study will help determine the intervention that is most effective among head and neck cancer patients with swallowing disorders. Dr. Martino wants to see if a reactive approach, which treats a swallowing problem after it’s progressed, works better than a more proactive stance, in which clinicians predict who may have a swallowing disorder and intervene earlier. “Our primary goal is to determine when is best to treat swallowing problems that, because of the disease a patient has, are expected to occur over time,” she says.

As part of the PRO-ACTIVE study, some patients will be referred to a speech-language pathologist during their radiation cancer therapy when swallowing issues first arise. Another group of patients will receive mild, low-intensity exercises prior to the start of radiation to strengthen their mouth muscles during meals. A third group of patients will receive high-intensity exercises, a therapy that will be executed both during and between meals. “Our motivation in designing groups two and three is to know whether patients will benefit equally from each type of therapy,” she says.

A big issue for many neuro patients

Sherri Zelazny, a Surrey, B.C.-based registered speech-language pathologist and board member of the Parkinson Society of British Columbia, says many patients with ALS and Parkinson’s disease come to her to seek help for swallowing disorders. Many have had a bedside evaluation for a swallowing issue in hospital, or have undergone a modified barium swallow in which an X-ray has pinpointed specific swallowing difficulties, she says.

Unfortunately, there’s no cure for swallowing disorders, which is why early interventions, such as oral resistance exercises that can strengthen the tongue, are paramount. “Things progress where we are responding to more urgent situations,” she says. “We can provide a higher quality of life if we can get to people earlier.”

Ms. Zelazny is supportive of programs like Dr. Martino’s that can identify and address swallowing issues early. So is Leslie, who hopes the research being done at Krembil will be able to help others in ways she wasn’t able to be helped. “It’s a fundamental change in your life,” she says. “This [study] is a positive way to change this. I was so happy to give input. We have been listened to.”

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