A hot dog nearly killed Joan Jacobson.
When she stopped for a lunch break while shopping, a chunk of hot dog lodged in her throat and she began choking. An off-duty police officer came to her rescue and was able to clear her throat — but she thought that would be the last bite she ever took.
Previously, Jacobson had suffered three strokes that caused temporary paralysis and impaired her ability to swallow, but she thought she had sufficiently recovered. After her near-death experience with the hot dog in 2014, doctors cut her off from eating and put her on a feeding tube. She had recovered from most of the effects of the strokes, but consuming anything by mouth remained an insurmountable danger for her.
Since then, a Northwestern University researcher who developed a novel way to diagnose and treat swallowing disorders has helped teach Jacobson how to swallow again. After three years without taking a bite, the 79-year-old Jacobson is once again cautiously enjoying some of the joys of eating.
Now, researchers are working with newly developed sensors and a smartphone app to monitor patients’ swallowing at home as well. It’s a trial treatment for a life-threatening disorder that affects millions of Americans whose numbers are growing as the population ages — and as strokes, dementia and throat cancer become more common.
“We’re always seeking to develop new methods to treat patients, because it’s such a devastating problem,” said Bonnie Martin-Harris, a speech pathologist and clinical scientist at Northwestern’s School of Communication in Evanston who works with Jacobson.
Difficulty swallowing, known as dysphagia, is a condition not widely known to the public, but it affects an estimated 9 million people, including 40 percent of institutional residents such as those at nursing homes. It can be caused by brain injuries, neurological diseases like Parkinson’s and multiple sclerosis, and can affect newborns and children with genetic or developmental disorders. It can lead to malnutrition or to fatal pneumonia, caused by food or liquid getting into the lungs.
One study found that patients with swallowing disorders were almost twice as likely to die in the hospital than similar patients without dysphagia. Their cost of care was 33 percent higher, totaling $17 billion over four years, showing the value of early detection and treatment.
Treating dysphagia may also help patients avoid permanent feeding tubes, which can have their own serious problems and can lead to difficult end-of-life decisions over whether to continue use.
After Jackson became afflicted with the condition, Martin-Harris helped therapists treat her swallowing problems and teach her how to eat again.
During a career focused on swallowing disorders, Martin-Harris helped perfect the gold standard test for dysphagia. Previously, doctors tested patients by having them swallow different foods, from purees to sandwiches, which can create a choking hazard and get into the lungs, and can lead to very different subjective assessments.
Starting in the 1970s, researchers like Northwestern’s pioneering Jerilyn Logemann began trying a modified barium swallowing study, having patients swallow liquid barium sulfate and using fluoroscopic X-ray videos to show patients the inner workings of their mouths and throats. Still, doctors used all kinds of different procedures for the test, leading to widely varying results. One cancer patient had 10 swallowing tests that were impossible to compare because each was done differently.
Martin-Harris developed a protocol to conduct and analyze the test, using specified amounts and thicknesses and 17 different measurements, so doctors can compare a patient’s progress reliably over time or from other physicians.
About 125 universities and some 7,000 clinicians worldwide have been trained to use the trademarked test. They have conducted some 40,000 tests entered anonymously into a database, which Martin-Harris hopes to use to research what interventions are most effective for which conditions.
Gary McCullough, former president of the Dysphagia Research Society and associate dean at Appalachian State University, credited Martin-Harris with transforming the test into a useful tool, and called her “one of our most respected researchers and colleagues.”
After years of research into helping patients with dysphagia, Martin-Harris has worked with therapists to develop exercises for the tongue, the jaw and the walls of the throat. Researchers developed animated illustrations of swallowing techniques to show patients what their swallowing looks like and how to fix it.
Breaking bread together
People who can’t eat lose much more than nutrition alone. Sharing meals is fundamental to socializing, to celebrations and our sense of togetherness. When Jacobson couldn’t swallow, she couldn’t fully take part in family gatherings, particularly at birthdays and religious holidays.
“It’s very hard,” said Jacobson, who struggles as well with speech impairment, which commonly comes in combination with swallowing disorders. “I watch everyone enjoy the meal. … I have to learn to swallow again.”
Her daughter, Marci Kreiner, noticed how it hurt her mother not to be able to enjoy a meal with her family.
“It is emotionally painful to not be able to participate in a meal,” Kreiner said. “I don’t think I ever realized what a social thing it is. How do you celebrate a birthday without any food? There are so many rituals and traditions that surround eating.”
More recently, after starting out with half-teaspoons of soup and then trying applesauce and yogurt, Jacobson is working slowly up to other soft foods. Last Thanksgiving, Jacobson was once again able to sit down to dine with the family on soup, mashed potatoes and cranberry sauce, marking a joyous reunion for the whole family.
Jacobson’s experience is tragically typical of many older patients who get taken off food and put on feeding tubes, Martin-Harris said.
“Everyone assumed she couldn’t eat or drink anything,” she said. “That’s what happens. They get a feeding tube and are sent to a skilled nursing facility, and they’re forgotten.
“We avoid feeding tubes at all costs, but sometimes it’s necessary for survival,” Martin-Harris said. “We like them to be short term, after a stroke or surgery, while we work in therapy to strengthen those muscles.”
Relearning the process
Looking ahead to the next phase in the evolution of treatment, Martin-Harris is testing new high-tech sensors developed by the Rogers Research Group at Northwestern to help retrain patients how to swallow and speak.
Despite being one of the most basic, reflexive functions of daily life, swallowing turns out to be a highly complex activity. Normally, when food passes the back of one’s tongue, its passage is no longer a matter of conscious thought. It is controlled instead primarily by the brain stem, which coordinates 55 pairs of muscles to make sure breathing stops, valves close the upper airway, the back of the tongue pushes back, the walls of the throat close in and the voice box elevates to get out of the way, so food drops safely down the esophagus.
But after an injury or disease, much of that process may not work normally.
A patient must relearn every step in the process, which is where the sensors come in. The medical director of Northwestern’s Center of Bio-Integrated Electronics, Dr. Steve Xu, helped develop wireless, flexible sensors that look like Band-Aids and can be stuck to various body surfaces to measure their activity.
In this case, the sensor is typically placed on the throat near the suprasternal notch, the hollow just above the clavicle. Various types of sensors are like extreme Fitbits, giving feedback not only on swallowing, but also breathing, speech, heart function, activity, sleep quality and, yes, step counts. In other circumstances, similar tiny sensors can detect ultraviolet radiation from the sun, or monitor the heart and brain.
Using the sensors, researchers hope to train patients to hold their breaths and swallow during exhalation, which they have found is the safest time to do so.
App helps track progress
To test and refine the swallowing sensors, the doctors are starting two new studies. One is aimed at military veterans at the Hines Veterans Administration Hospital with mouth and throat cancers, often developed from the sexually transmitted human papillomavirus. The cancer strikes patients when they’re young, and can be treated successfully with chemotherapy and radiation. But that can result years later in fibrosis that damages tissues, causing devastating injuries to the muscles needed to swallow.
The other study will focus more on the other end of the age spectrum, focusing on dementia patients who are losing the ability to swallow.
Next, Martin-Harris wants to get patients to wear the sensors at home to continue monitoring how they’re doing, using a smartphone app to track the results both for patients and doctors. They can use the information to refine the patient’s exercise program and rehabilitation outcomes.
Xu, a physician and an engineer, said the work is important because swallowing disorders can affect everyone from the very old to the very young, including premature babies with congenital issues who wouldn’t have survived years ago.
“It’s such a hidden epidemic,” he said. “It touches so many conditions.”