Invisible disorder

Invisible disorder

PHHP researchers help patients who have difficulty swallowing

By Michelle Koidin Jaffee

Dr. Emily Plowman helps Bert Ranum improve his breathing capacity. Photos by Jesse S. Jones

His nostrils pinched by a nose clip, Bert Ranum purposefully coughs as hard as he can into a handheld device that measures the velocity of the air he exhales. Emily K. Plowman, Ph.D., CCC-SLP, an associate professor in the PHHP department of speech, language, and hearing sciences, is impressed by the reading. “He’s like an Olympic cougher at this point,” she said, prompting grins from Ranum and his wife.

The exercise is among a set of breathing and swallowing exercises Plowman leads to help Ranum strengthen his airway defense, or his ability to keep food from “going down the wrong pipe,” which can cause aspiration pneumonia. For now, this isn’t a problem for him. But it is expected to become one.

Ranum was diagnosed last year with amyotrophic lateral sclerosis, or ALS. The neurodegenerative disorder progressively weakens muscles, including those involved with chewing and swallowing. He now practices daily exercises learned from Plowman.

“I occasionally get something down my windpipe and cough,” said Ranum, an attorney who lives in Gainesville. “But when we do the swallowing analysis, I’m safe. So far, I’m pretty good.”

Swallowing is a process that seems automatic to most and generally goes unnoticed — unless it’s not working. And yet dysphagia, or difficulty or discomfort in swallowing, affects a significant portion of the population: One in 25 American adults per year report a swallowing problem, according to the journal Otolaryngology—Head and Neck Surgery. That’s an estimated 9.4 million adults.

The inability to execute a healthy swallow is a common and debilitating symptom of several diseases, including stroke, Parkinson’s disease and traumatic brain injury. In young children, swallowing problems can stem from congenital disorders that cause weakness or spasticity in the head and neck, such as cerebral palsy. Dysphagia can also develop as a side effect — an unfortunate consequence of necessary medical treatment such as surgery to fuse the spine or radiation therapy to treat cancer in the head or neck.

That inability to swallow can then significantly affect quality of life, from detrimental weight loss to distress in social situations, such as restaurant meals or holiday gatherings. And it’s a condition that is often suffered in silence.

Dr. Ianessa Humbert goes over techniques to help Dr. David Borchelt improve his swallowing function.

Swallowing researchers Plowman and Ianessa Humbert, Ph.D., CCC-SLP, also an associate professor in speech, language, and hearing sciences, are working to advance treatments for this devastating disorder.

“When someone is living with a swallowing impairment, you don’t see it,” said Plowman, a graduate of the college’s doctoral program in rehabilitation science. “It’s like this invisible disorder, and yet it leads to such huge psychosocial and medical issues. We need to swallow for survival, and when it’s taken away, people are very isolated from society. They’re sitting there spitting into a handkerchief because they can’t even manage their own saliva.”

Plowman and Humbert joined UF in 2015 and merged their labs — previously at the University of South Florida and Johns Hopkins School of Medicine, respectively — to establish the Swallowing Systems Core Laboratory they now co-direct.

Energized by the opportunity to collaborate with UF swallowing experts, such as Karen Wheeler Hegland, Ph.D., CCC-SLP, and with support from the Center for Respiratory Research and Rehabilitation, directed by Gordon Mitchell, Ph.D., Humbert and Plowman saw a path to take their research to new heights.

In December, Humbert and Plowman hosted a Swallowing Thank Tank for experts from across the country who came together to discuss the latest research and, importantly, solutions for swallowing disorders.

Within speech pathology, swallowing has only come around since the 1980s,” Humbert said. “We’re trying to get some sun so we can grow. Ultimately, swallowing makes a big difference in terms of medical status.

“If somebody cannot walk but is otherwise healthy, or cannot speak but is otherwise healthy, that is not the same kind of medical concern. Swallowing is how you get your nutrition, your hydration, your meds — so while we might not get as much sun as we’d like, the patients really need this exposure.”

To build bridges across the related areas of expertise, the think tank brought together speech-language pathologists along with UF experts in neurology, neuroscience and neurogenetics as well as anatomy, evolutionary biology, otolaryngology and kinesiology.

“It was a neat mixture of minds to think about something that flies under the radar but is an extremely important problem,” said Todd Golde, M.D., Ph.D., executive director of the Evelyn F. and William L. McKnight Brain Institute of the University of Florida, who served on the think tank’s scientific expert panel.

Current therapies are guided by the cause of the dysphagia, the severity and the prognosis, and success rates vary. Treatments range from breathing exercises to strengthen the muscles involved with swallowing to injecting fat to help bulk up the paretic vocal fold or injecting Botox to relax the area.

With several ongoing externally funded research studies, the Swallowing Systems Core team is working to expand the options. In one clinical trial, supported by the National Institutes of Health, Humbert is investigating the use of biofeedback, or using X-rays that show patients live video images of their own swallowing movements to help them understand what is happening on the inside and how well they are protecting the airway.

Plowman has a new five-year grant from the National Institute of Neurological Disorders and Stroke to determine underlying mechanisms and progression of respiratory, speech and swallowing impairment to create the first predictive model of bulbar decline in patients with ALS. She is also co-investigator of an NIH-funded study with Laura P.W. Ranum, Ph.D., director of the UF Center for NeuroGenetics, evaluating the efficacy of a set of novel therapeutics in a mouse model of ALS.

As a scientific collaborator, Ranum views Plowman’s work through one lens. As the spouse of a patient, she views it through another. Bert Ranum is her husband.

Laura Ranum, a professor of molecular genetics and microbiology, says that from both a research point of view and a health care point of view, she feels fortunate to be in an environment where Plowman and Humbert are.

In her husband’s sessions with Plowman, he works on building strength and endurance, much as one would do pumping iron at the gym.

“Dr. Plowman has figured out how to keep breathing function working, and that’s a huge thing not just for ALS patients but also all neurodegenerative diseases,” Laura Ranum said. “There’s a common thread that many of them result in death from aspiration and resulting pneumonia, so if you can preserve the function of your breathing and your cough just by pumping a little ‘inspiratory and expiratory’ iron with these simple devices, I think that really makes a difference.

“We’re also excited about some of the therapeutic strategies we are testing in the lab, and we are hopeful the treatments might be available in time. And if not for Bert . . .,” Ranum’s voice catches as tears fall.

“. . . For others,” he finishes.