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Deep Breath: Parkinson’s Patients Continue Struggle as JU Presses Forward on Solutions

By Michael Stone

Originally printed in the Fall 2016 issue of WAVE magazine.

On a Tuesday night in Gainesville, you might find Stu Pearson singing karaoke at the Dirty Bar. Or at Crafty Bastards on a Wednesday. Or at Napolatano’s on a Friday.

As he steps in front of the crowd and the song plays through its intro, he’ll pass the mic from one hand to the other. He doesn’t leave the audience without an explanation for the shifting: It’s not because he’s nervous but because he can’t help it.

“I’m telling the folks that, ‘We Parkinson’s people just have to keep moving,’” said Pearson, a 70-year-old civil engineer for the city of Gainesville who, in 2009, became one of the 7 to 10 million people worldwide living with the motor-system disease.

“Then [when] I get into the song, [the movement] kind of goes to the background. And that’s how I feel like I’m challenging myself in terms of helping with the natural production of dopamine.”

Indeed, Parkinson’s is believed to be rooted in the impairment or loss of the neurons in the brain that produce dopamine, which carries signals throughout the brain for coordinating the body’s movements. But Pearson’s singing goes to other dimensions of assisting in his battle with the disease.

The activity also helps strengthen muscles handicapped by Parkinson’s, said Dr. Christine Sapienza, dean of Jacksonville University’s Brooks Rehabilitation College of Healthcare Sciences.

As a Parkinson’s researcher, Sapienza is known internationally for publications on treatment protocols for helping people with the disease in their speech, swallow and airway-protection problems. She is also a co-author of a paper in the journal Disability and Rehabilitation from this year that describes the positive impact of singing on people with Parkinson’s.

“Singing is a translatable activity that engages the breathing, voice and speech muscles through an activity that gives a Parkinson’s patient a sense of community engagement,” she said.

In other words, “I’m not going to get stronger just by taking a walk. That might help my cardiovascular system, but in order to strengthen breathing and voice muscles, you need to make them work,” like through singing, which produces air pressures four times or more, which is greater than talking.

Such methods that stand to improve the quality of life for Pearson and the many others who struggle with Parkinson’s symptoms daily — as well as those who care for them — is at the heart of much of the ongoing research into the disease at the Brooks Rehabilitation College of Healthcare Sciences.

To make headway in their Parkinson’s research, Sapienza and others at JU lean on a collaborative approach that involves researchers from not just health care but other scientific fields, too.

Though they say more advancements are to come, the researchers say the gains in roughly the past decade or so have greatly empowered Parkinson’s patients and their caregivers, who often felt far more helpless before.

Recent visions at JU for quality-of-life improvement include a biofeedback device that tells Parkinson’s patients they need to speak louder and a video game-like platform that helps caregivers more easily navigate the many challenges that arise with the complex disease.

And if Pearson’s present life is an indication, Parkinson’s certainly does come with its challenges. But he’s making strides forward as best he can — and having a daughter who researches the disease and has used her father’s diagnosis as a driving force in her search for solutions certainly doesn’t hurt.

Stu Pearson and Dr. Erin Silverman
Stu Pearson and Dr. Erin Silverman

Living with Parkinson’s

By venturing into the city and living as fully as he can, Pearson is finding ways to pound back the depression that compounds itself in so many Parkinson’s patients. But to make things harder on Pearson, his wife passed away from blood cancer in April of this year.

“The house is just strangely quiet,” he said, “and so I’m changing that.”

Changing that with karaoke and with dancing, too — through salsa lessons or to any band that happens to be playing at the venue that night. The constant movement, he explained, meshes with his motor symptoms, which, for the tremors, have stayed within a manageable amplitude of an eighth or quarter of an inch.

“I’m there all night, and I dance all the fast dances that I can persuade people to dance with me — or I just go out and solo,” Pearson said, noting that on his 70th birthday in June, he headed to the Atlantic on Main Street in Gainesville for ‘80s night.

“And you know what? I danced better than some of those college guys that were in there that were 50 years my junior. I just kept drinking water and dancing and had a grand time.”

Pearson’s activities have indeed been shown to be valuable aids in offsetting some Parkinson’s symptoms, experts say — dancing as a movement-rich exercise, singing as a workout to strengthen the airway muscles in decline because of the disease and age, and both as avenues toward socialization.

Pearson is in a unique position as a Parkinson’s patient because of that daughter who studies Parkinson’s: JU’s Dr. Erin Silverman. So he’s able to receive sound advice regularly.

Specifically, Silverman investigates how chronic disease conditions, including Parkinson’s, affect breathing, speaking, coughing and swallowing, as well as how targeted interventions, delivered in person or remotely, can help preserve or rehabilitate airway protection.

Initially concerned with vocal performance and voice services for professionals, Silverman started focusing on neurorehabilitation when she began her Ph.D. in 1999 and her clinical fellowship year at Shands, the University of Florida’s teaching hospital. Over time, her interests turned to helping those affected by movement disorder.

“I had a lot of patients who were on ventilators, a lot of patients who had swallowing issues following stroke or traumatic brain injury,” said Silverman, who teaches communication sciences and disorders at JU and is also a certified Research Coordinator and adjunct professor at UF.

“So in the hierarchy of things you’re concerned about in those types of settings, life-threatening issues such as respiration and swallowing take precedence over language expression or speech articulation.”

Attention on Parkinson’s disease, she said, has increased in roughly the past 15 years because of widely publicized celebrity cases, as well as aging from what had remained the largest living U.S. generation before being overtaken by Millennials this year: the Baby Boomers, or those born between 1946 and 1964.

“I think there’s an increased awareness about the condition because of Michael J. Fox and Muhammad Ali,” Silverman said. “It’s one of the higher-profile conditions that we see also because we have all the Baby Boomers entering that phase of their life where Parkinson’s typically emerges.”

With Parkinson’s often turning up during retirement, the golden years, like her father’s, can be profoundly affected, she said.

“They’re finally able to fully pursue their passions and interests and engage in leisure activities,” Silverman said, “and the prospect of having to manage a neurodegenerative condition during these years is something that’s obviously impactful.”

Dr. Christine Sapienza
Dean Christine Sapienza

Sapienza Finds a Need

As researchers increasingly turned their attention toward Parkinson’s, practical assistance didn’t come right away, but the new focus at least revealed unmet needs, Silverman said.

“All we were doing up until that point was preparing patients and caregivers for what to expect — like if you have a neurogenic condition, we know that things are going to deteriorate over time,” she said. “And so the focus really was on compensation and preparation.”

But it didn’t take long for researchers to push forward with some tangible relief.

One specific Parkinson’s tool that emerged is the EMST (expiratory muscle strength trainer) 150 device, created by UF’s Dr. Paul Davenport, Dr. Daniel Martin and Sapienza, who came to JU from UF in 2013.

Studies with people using the EMST150 began in 2002. To operate the handheld, spring-loaded device, users blow into it, and if they don’t emit enough air pressure, the device won’t open, preventing the air from flowing through. So users build up their breathing muscles until it does open, and to further train their muscles, the required levels of air pressure grow progressively higher.

Essentially, the device acts much like dumbbells and barbells would for athletes.

“I can’t go to a gym and find a weight machine that I can utilize to strengthen my tongue,” Sapienza said. “I can’t find one to strengthen my laryngeal muscles or my diaphragm for that matter.”

With Parkinson’s, she added, “you think of hands trembling, you think of the shaky head, you think they can’t walk, but what people don’t realize … what’s being also affected is the skeletal muscles that control speech, voice, swallow and cough.”

Studies have shown that the EMST150 does, in fact, strengthen the muscles charged with swallowing, talking and coughing for patients with Parkinson’s, multiple sclerosis and other neuromuscular illnesses or injuries. But unaffected people — like those going through aging changes or those of any age, really — can use it in the same way.

Another example occurred in 2002, at the beginning of Sapienza and Davenport’s research with EMST150. It was then they offered it to high school students in band to see if it improved their air pressure in wind instruments — and it did.

Silverman, as a Ph.D. student, was among several researchers investigating the therapeutic application of the EMST150 before it became available to the public in 2009.

“What made Dr. Sapienza’s work so exciting is that, for the first time, we were looking at these patients as a potential focus of a rehabilitative or restorative treatment, which prior to that was not even on our radar,” said Silverman, who met Sapienza in the mid-‘90s while studying under her as an undergraduate.

“The EMST device is based on these well-honed principles that we’ve known about for decades in exercise physiology, which is chiefly the principle of overload. The principle of overload is why you can’t grab a 1-pound barbell and sit there and do curls and expect to see changes in the muscles there.”

Today, EMST150 is used by Parkinson’s patients in the U.S., the U.K., India, New Zealand and several other countries, and all along, it has remained affordable, Sapienza said.

“We’ve never tried to upcharge people for this simple but highly effective device,” she said. “We’ve always educated for free. We’ve done blogging. I’ll do Skype sessions for free with people: caregivers, support groups, lots of doctoral students who’ve gone on to study it. And then that results in a positive effect of people learning about the device.”

Sapienza said that, in theory, someone who uses the device regularly and as directed could strengthen her or his airway so as to indefinitely put off the No. 1 cause of death related to Parkinson’s: aspiration pneumonia.

With anything related to aging, “you have two choices,” she said. “You can sit on your couch, or you can actively involve yourself in an exercise program known to do X, Y and Z. Is there a guarantee with any of those programs that they’ll do X, Y and Z? Well, there’s more than chance.”

A Silent Symptom

Aspiration — which stems from the neuromuscular breakdown in Parkinson’s and other disorders — occurs when foods and liquids go into the lungs instead of the esophagus and stomach. These are small particles, not huge bites, but they’re enough to trigger the body to want to eliminate the foreign intrusion, leading to a pneumonia infection.

“Eating and drinking are at the center of virtually every major ritual or tradition we have as families,” Silverman said. “And for these patients who have difficulty swallowing, rather than being able to enjoy and engage with their family members during these times, they’re left very concerned and worried about, ‘Will I aspirate? Will I not aspirate? Am I going to start coughing? Will I embarrass myself?’”

Though widely associated with having food or liquid “go down the wrong way,” aspiration can also stem from stomach acids coming up and then being inhaled into the lungs, Sapienza said.

While a Parkinson’s patient might aspirate and then cough or show other outward signs, she or he might instead silently aspirate, meaning the matter has entered the lungs without any outward signs.

“You and I, we would cough, we would choke, and we would clear it, and we would do everything we could to clear it,” Sapienza said. But a silent aspirator doesn’t sense that the aspiration is occurring.

The condition could result from the brain deteriorating to a point that prevents the patient from responding to the stimulus, but the exact cause isn’t known, reemphasizing that Parkinson’s is “perhaps the most complex disease in clinical medicine,” said Dr. Michael Okun, administrative director and co-director of the Center for Movement Disorders and Neurorestoration at the University of Florida, and a longtime collaborator with Sapienza.

Because of the lack of outward signs, Parkinson’s patients and their physicians should assume silent aspiration is present and proceed with periodic screenings for it, said Okun, who also serves as national medical director of the National Parkinson Foundation.

“We believe that everybody’s at potential risk,” he said.

Pearson’s silent aspiration was found as part of a study by his daughter shortly after his diagnosis.

He has been fortunate in that he hasn’t had to change his diet — something Parkinson’s patients often must do to prevent swallowing problems. But he has felt some slight effects.

“The alarm will go off — 3 o’clock — and I’m in the field,” Pearson said of receiving an alert to take medication. “There’s no water around, so I just pop the pill and swallow. And usually it goes down, [but] sometimes if my throat is a little bit dry, then it might hang up. But I can feel it down there, so I just have to keep swallowing ‘til it continues on its journey.”

For those patients needing a more drastic diet change because of swallowing problems, nectar- or honey-based liquids might be the solution, ensuring what’s being swallowed is thick enough to make it to the stomach, explained Heather Newberg, a 29-year-old JU master’s student in speech pathology studying under Sapienza.

(Thinner liquids, like water and soda, can be harder to get down for patients with dysphagia, a broader term that simply means a difficulty with swallowing.)

Master’s Student Heather Newberg
Master’s Student Heather Newberg

Caregiver Needs

The confusing web presented by Parkinson’s — what can be consumed, noticing symptom warning signs and how to react, what therapies to perform and when — is navigated not only by patients but also caregivers, typically family members or friends who now have to devote a great deal of time and effort to the Parkinson’s patient.

Such immense responsibility with no prior expertise led Newberg to decide on her research: discovering the needs of caregivers by talking with them through Parkinson’s support groups.

After Newberg and Dr. Bari Ruddy, a colleague of Sapienza’s at the University of Central Florida, complete their survey-based data collection, the hope is to develop a video game-like platform for an iPad or similar device that brings the endless strings of one-dimensional information found on paper and online into a one-stop, avatar-based, interactive environment.

In other words: the gamification of caregiver burden.

“We’re talking about someone’s loved one,” said Newberg, who has a family member with Parkinson’s. “You wouldn’t want to be caring for your mom or your dad and not have everything you need to know in order to do that well.”

Thus far, Newberg has visited three support groups in the Jacksonville area, and though it’s too early to offer any research conclusions, she has been noticing one dominant trend: an overall lack of knowledge and confidence.

“So far, it’s been pretty consistent with, ‘I don’t feel as confident as I would like to feel. I don’t feel as knowledgeable as I would like to be,’” said the Jacksonville native, who had until recent years been involved with elementary education, switching to speech pathology following her father’s hemorrhagic stroke and subsequent passing.

“I think it’s safe to say our end goal is to just build that knowledge base and build that confidence.” This informed at-home care would, in turn, lower hospital admissions, she added.

At one support group, Newberg and Sapienza learned of a member who died after choking on food during Easter dinner — a situation that prompted discussions on safety measures, like the Heimlich maneuver, and then the two of them helping to coordinate a workshop to assist caregivers at the new Brooks Rehabilitation College of Healthcare Sciences building at JU.

“We have such a talented pool of caring faculty and students eager to help our community,” Sapienza said.

Expected to last half a day sometime this fall, the free event will rotate attendees among different stations that feature several JU faculty members teaching need-to-know aspects of Parkinson’s. These include the Heimlich maneuver, nutrition, yoga and dance, medication side effects, walking and balance, and mental health.

“We decided … to focus it on whole body,” Sapienza said, emphasizing the importance of caregiver knowledge from head to toe, plus the environment outside the body.

Caregivers, she added, stir anxiety within themselves by constantly asking: “‘Am I doing the right thing? Am I doing the wrong thing? Is he supposed to be able to eat that? I don’t know.’ … There are a lot of little things that seem very common sense to professionals that create this incredible anxiety to the caregiver because they don’t want to do any harm.”

Another Device to Help

Though an administrator today, Sapienza keeps her roots in the traditional roles of a hands-on academic, including advising protégés (doctoral students still at UF, as well as Newberg and other graduate students at JU) and research.

“Research is at the heart of my soul,” she said, “and so I was actually fearful that when I became an administrator that I would lose my research identity. … [But] I don’t let that go.”

One project she recently embarked on with JU’s engineering department chair, Dr. HuiHui Wang: a biofeedback device that will tell Parkinson’s patients, in real time, that they need to adjust speaking volume to appropriate conversational levels.

Through its complex damage to the body, Parkinson’s causes patients to develop not only a weak respiratory system and voice box, preventing loud voice, but also what Sapienza calls “a deficiency in their sensory loop.” In other words, they can’t correct their voice because they don’t hear themselves properly.

“Long story short,” she said, “if you can’t talk louder, you can’t project; you essentially lose your occupation, you lose your social capabilities, you go into some withdrawal, you can’t engage in crowds, you can’t be heard. It’s a difficult symptom.”

The biofeedback device is a portable system of a necklace and a wristband.

The necklace will have a microphone that picks up the wearer’s voice while filtering out all other noise and frequencies. If voice volume isn’t where it should be, the wristband alerts the wearer with a tactile cue, like a buzz, or a visual one.

“So the necklace picks up the voice, buzzes the [patient’s] wrist, and [the device] is basically saying to him, ‘Joe, you need to speak louder,’” Sapienza said.

She nicknames the device a “spousal reminder.”

“As an older adult,” she said, “you don’t want to constantly be in a situation where somebody is saying to you: ‘I’m sorry, I can’t hear you. Could you speak up? Honey, can you talk louder?’ That’s what becomes socially depressing for them.”

Sapienza and Wang have developed a larger working model but are trying to miniaturize it for better consumer use and have their intellectual property protected.

They are doing feasibility testing and seeking funding for product development, and there isn’t a timeline for public release.

Perhaps the main driver of their research, Wang said, is affordability to the patient.

“It seems there are products like this which can give biofeedback to Parkinson’s disease patients, but it’s too expensive,” she said. “Most of the patients cannot afford them.”

Wang said that, as far as the technology involved, the project is nothing new to her, but directly helping people with an illness is.

“I’m always thinking about how to contribute to society and the community,” she said, noting her separate research on solving problems with water quality in Jacksonville. “I just want to apply engineering knowledge and technologies to help people.”

Wang said the idea for the biofeedback device came shortly after she met Sapienza as a colleague at JU. The two discussed their fields, and Sapienza noted the need for such a device for Parkinson’s patients.

Being in academia, the two wanted to pursue the idea, especially because they could involve their students in an interdisciplinary project–Wang’s engineering students on the computer and mechanical aspects, and Sapienza’s on the patient and health care facets.

Wang said the most important outcome for not only the students but for her, too, is reinforcing the idea that the best results emerge from cross-field collaboration.

And though Wang has remained the teacher, she has at times slipped into the role of learner, such as when her engineering students presented some tweaks to slightly improve the device’s design.

“During this project, the students also taught me,” she said. “It’s a learning process. I want to be a learning professor forever.”

‘I Let the Voice Box Roll’

Back in Gainesville, Pearson still blows into his EMST150 device occasionally to test if he’s still at the same strength level  though he’ll admit he doesn’t use it as often as he once did.

His record amount was 25-plus times a day, and he’d jot down the results “on a little pad and then turn in my homework” to his daughter. “I was striving for an A.”

Silverman said that “long-term compliance is an issue,” as is the case with any exercise-based intervention. But she is glad her dad has taken to singing and dancing. “Whatever motivates him, if that’s what it takes, I’m all for it.”

Pearson, who has another daughter and is a grandfather of two, doesn’t buy it completely. “My daughters think I’m a little crazy,” he joked.

If Pearson doesn’t get to dance, he’s sure to add in an hour or two of walking to his daily routine, with ‘60s radio giving him a good beat with which to match his footsteps.

It’s during these walks that he can tell the Parkinson’s is progressing: His stride becomes hampered by his leg muscles locking up, turning the walk into more of a march.

“But as I continue through the walk, that usually fades,” he said, “and pretty soon, I’m back to what I consider the normal stride and coordination with walking.”

He recalled the time in 2009 when all this started, the time his Parkinson’s diagnosis came.

During his six-month visit with his regular doctor, she noticed a twitch to his thumb and referred him to a specialist, who told him the bad news: Yes, you have Parkinson’s.

“My reaction was one of disbelief,” Silverman said of learning of her father’s condition, noting how the diagnosis has since become a driving force in her work.

“Even though I was researching Parkinson’s disease at the time and I knew that my father was being evaluated for some tremor issues he had, for whatever reason, it never even entered my consciousness that it could be Parkinson’s disease. I was always thinking, ‘Oh, he had an idiopathic tremor,’ or for whatever reason, my brain didn’t even go there.”

Neither had her dad’s.

“The vision of my life did not include Parkinson’s, I’ll assure you of that, and it was a surprise,” Pearson said. “But I’ve got no control over that, so I can’t waste a lot of energy on that part of it. My energy has to be focused on what I’m doing now to make sure that I stay as active as I can, as long as I can.”

When talking about Parkinson’s, researchers go into the scientific specifics of the disease and its effects and treatments, but Pearson stays with his more simplified approach, like singing along to Elvis Presley’s “Hound Dog,” as played by the band Frazzled at the Dirty Bar.

“That’s a song that you could really get volume into, at least I can. So I think I was doing a better job of getting the lyrics out than the guy with the microphone,” he said.

“When I have the opportunity, I let the voice box roll, and it’s fun.”