For the past 44 years, Terry Scott has been, as he described it, “one of them nasty ol’ truck drivers.” The Gretna resident did runs out to Cheyenne and back three times a week up until Valentine’s Day this year. He was on mandated rest in Cheyenne that night when the phone rang.
“He jumped out of bed to answer the phone, and he fell on the floor,” said his wife, Debra.
Scott had suffered a stroke. The trucker was air-lifted early Feb. 15 from Cheyenne’s hospital to one in Denver, where he spent 10 days in intensive care and a little over two weeks total before he could return closer to home.
On Wednesday, his vigorous handshake betrayed the Madonna Rehabilitation Hospital medical bracelet on his right wrist. An underlined message on the dry-erase board in his room announced his scheduled discharge date, April 13. It was lunchtime, and Scott was deliberately eating a French dip sandwich that had been ground into a coarse puree, soft carrots and an extra side of gravy. He drank grape juice and milk, both thickened with a honey-based solution in an effort to prevent it from going down the wrong pipe.
Eleven years ago, he said between bites, he went through radiation treatment for larynx cancer. So he knew from experience, as his body slowly regained strength, that he’d have to relearn things that once felt automatic, even something as simple as swallowing.
But swallowing, it turns out, isn’t so simple.
“Swallowing is the single-most complex system in the human body,” said Angela Dietsch, who teaches the graduate-level swallowing disorders class at the University of Nebraska-Lincoln. “It involves 26 pairs of muscles, five cranial nerves and a 1.5-second process. How’s that for intimidating?”
It’s a process that often breaks down in patients seeking care for strokes, traumatic brain injuries, throat cancer and brain cancer. A symptom of a swallowing disorder -- feeling like food is often stuck in your throat, gagging or coughing regularly -- can be a precursor to a diagnosis of a degenerative disorder such as Parkinson's, muscular dystrophy or ALS. The muscles required to swallow can atrophy even more during the time a patient spends connected to a feeding tube.
"Most people don't even know there's such a thing as a swallowing disorder until somebody they care about has one,” said Dietsch, an assistant professor in the department of special education and communication disorders at UNL. "But if you were to sit in Denny's on a Tuesday night or wherever and just start listening to how many people cough or clear their throats while they're eating, it's a lot of people. Which is not to say that all of them have a swallowing disorder, but it definitely starts to raise your alertness to the fact that it doesn't take much for that process to go haywire.”
There is a name for the condition when the process has gone haywire -- dysphagia. Because it often affects people who are undergoing treatment for life-or-death conditions, correcting a swallowing disorder was often an afterthought at best. But more and more, therapists and researchers are focusing on dysphagia.
"I can't imagine -- even with as much time as I have spent working with people who have these kinds of issues, and sitting around the table with these people and their families -- I cannot even begin to imagine what it would be like to have that whole section of what is enjoyable of life be no longer a part of things,” Dietsch said. “As cool as I think all of the science about it is, that’s what makes me continue to work on it.”
At Madonna Rehabilitation Hospital, patients being treated for dysphagia spend time in dining groups, where therapists monitor their swallows, said Teresa Springer, a Madonna speech-language pathologist who also teaches at UNL. She and other pathologists routinely study X-ray videos of patients who eat or drink solutions coated with barium, to follow the trail of food through, ideally, the esophagus.
And they also work the patients hard, said Terry Scott. The therapists drill into you a method for an activity you never thought about -- chin down, small bite, two swallows, small sip of liquid to wash it all down. Therapy methods can involve everything from muscle-stimulating electrodes to sipping air through straws twisted into knots. Madonna’s patients with dysphagia are among the most vocal, Wagner said. Pronouncing words that include Ks and hard Gs work the muscles at the back of the tongue. Belting out an “E” sound in falsetto can strengthen muscles used to swallow.
"Sometimes, our patients are loud," she said.
“Sit in here and sound like a little songbird,” Terry Scott said.
“And that’s kind of the new thing now, is we want our patients while they’re going through radiation to keep working on their exercises,” Springer said. “So we teach them their exercises before they go to radiation, so they’re not losing as much muscle mass. It’s kind of like, if you don’t use it, you lose it. And so that’s what they’re learning now. That’s what research is showing.”
Scott said that when he went through treatment for cancer, he lost the ability to swallow for four months.
“They didn’t offer any exercises then,” Scott said. “I just had my radiation, then go back home. I come back the next day, radiation.”
Springer said that treating dysphagia head-on is a developing field. There’s not much research on the subject compared to other life-altering conditions, she said.
“Years ago, if people had a swallowing problem, they just realized there was nothing they could do for them, or maybe just modify their diet, and that was it," she said. "But no one wants to be on a puree diet any longer than necessary. So that’s always our last resort.”
One of those helping to build the body of dysphagia research is Dietsch. Before joining the faculty at UNL last fall, she spent three years conducting dysphagia research during a post-doctoral fellowship at Walter Reed National Military Medical Center.
The primary goal of the residency was to build a massive database to track dysphagia treatment in a group of patients who had not been studied much previously -- those who lost some or all of their swallowing capabilities after experiencing combat-related trauma. Far and away, Dietsch said, the group members she worked with were young men who had sustained blast-related injuries or gunshot wounds. As they recovered from traumatic brain injuries, shrapnel damage and the like, they also couldn’t eat.
"These are the guys who -- let's face it, an 18- to 25-year-old population, if you brought in 10 Dominos pizzas and you turned to pay the delivery guy, all of the pizza would be gone by the time you turned back,” she said. “To tell them, 'Hey, you've been overseas eating MREs for the last however many months you've been deployed, and now you are in delivery distance of 875 restaurants and you can't have any of it,' it does not go over well."
As a graduate student, Dietsch voluntarily went on an extended diet of pureed or otherwise viscous fluids in an effort to experience, as best as she could, the diet limitations many people with dysphagia endure. She can no longer stomach yogurt because of it.
“Pureed pepperoni pizza is not as bad as you would think,” she said. “Pureed salad with Italian dressing is not good -- for future reference.”
At Walter Reed, she and two of her mentors, Nancy Pearl Solomon and Cathy Pelletier, who studies not only speech pathology but also has a Ph.D. in food sciences, wanted to motivate the wounded soldiers to continue through the rigors of dysphagia therapy. Dietsch said it grows frustrating not only for those who can’t eat like they used to, but also for their loved ones who aren’t sure how to adapt to the change.
“Family members don't want to exclude the person who's not able to eat safely, but they also feel weird about eating in front of them because that's just not how we do things,” Dietsch said. “So people wanted to be part of the social aspect of it, and people also reported that they missed the sensation of tasting things.”
Enter the taste strip. You may be familiar with Listerine’s PocketPaks, which contain dissolving mouthwash strips. For a brief period, grocery stores also offered flavored strips to shoppers as a way to sample a new flavor of sports drink, or tequila. Dietsch and the researchers used strips that they acquired from a now-defunct company to study whether or not if just a brief burst of flavor could help produce saliva in soldiers with dysphagia who also experienced chronic dry mouth. The results of the saliva study were promising, and the impact on morale was, too. Soldiers began clamoring for the taste strips, aside from the buttered popcorn-flavored ones.
“There were some that were vanilla cupcake,” she said. “Glazed donuts were a big hit. The lemon-lime ones were really popular. We had bacon ones. There were people who loved them, and there were people who would like grab the trash can, which is kind of how real life is with bacon.”
Dietsch, who grew up in Omaha, said she returned to Nebraska not because it’s close to home, but because the facilities on campus -- a neuroimaging center, a food science program and the speech pathology clinic among them -- will help further her research on taste and sensory information and how it relates to swallowing. As she continues to research dysphagia, she said she also wants to offer those dealing with it safe reprieves from being unable to dine.
“For people who have a swallowing disorder, and aren’t able to eat anything, the feedback is, ‘I will take what I can get,'” she said.
After Bill Nielsen suffered a stroke in February, he said he had no idea his recovery would include a month of being unable to eat.
“They were telling me I would be better in a week," said Nielsen, who celebrated his 37th anniversary with his wife, Marie, at Madonna on Thursday. "And I probably would have been, if it weren’t for all the other things."
“You just kept getting everything possible that could go wrong with you wrong,” Marie Nielsen said.
He received treatment in Norfolk, his hometown, for four days before a case of pneumonia forced his transfer to the University of Nebraska Medical Center in Omaha. He couldn’t eat or drink, and was fed through a tube inserted through his nose.
“And just bad luck, it pooled and created an ulcer," he said. "So I went a month without eating.”
He rejected the concept of thickened water, opting instead for the syringe. At Madonna, Nielsen joined the dining group, and "graduated" within a week.
“I went from barely being able to eat anything to where I can chug a bottle of water now,” Nielsen said. “It was huge. My wife and my sons came down on Easter and I had a Dairy Queen chicken strips basket with white gravy. I think the second day, I had a beef enchilada. I mean, it was not like a normal one, it was ground-up some. But it was … it was awesome. It’s amazing, stuff you wouldn’t look at before, and how appetizing it became.”
Nielsen said he planned to celebrate his wife's birthday on April 26 at their favorite Mexican restaurant.