One day last summer, Janelle Schiell took her husband Randy to UCHealth University of Colorado Hospital, where he spent the next 10 days. Following the hospital stint, Randy entered a facility for physical and occupational rehabilitation of symptoms related to his Parkinson’s disease.
The problems that led to his institutional stint, however, were more than physical. Behavioral issues – anger, moodiness, suspicion – had “come to a head,” Janelle recalled. She and Randy, now 65, have been married 44 years, but he’d accused her of having an affair and told her she needed to leave their home.
The words stung her, but she worked to understand what brought out the words she knew he didn’t mean. Overmedication and dehydration were possibilities. Another was dementia, which is common among Parkinson’s disease patients and shows up, on average, about 10 years after the initial diagnosis.
Randy Schiell received his diagnosis of Parkinson’s disease 10 years ago. He had built a successful career in financial management and held a bachelor’s degree in sociology from the University of Colorado Boulder and an MBA from Colorado State University. But the disease gradually weakened him, and he had to give up working when dangers like falling asleep while driving cropped up. He at times became overwhelmed by information and struggled with retrieving words.
Sitting with Janelle in their Denver home on a recent morning, Randy Schiell is quiet, speaks with some difficulty, and dozes off briefly from time to time. But when he answers questions and expresses himself, he is cogent and articulate. He gives a succinct statement as he listens to talk of the time in the rehabilitation facility.
“We worked hard to get out of there,” he says softly.
“It’s better to be home,” Janelle nods.
Music as medicine
A glance at their surroundings confirms that. A long hallway that runs from the front door, past the kitchen to a large, open living area is lined with photos of them together and with their son and daughter and extended family. Janelle’s paintings brighten the living room along with sunlight that pours in from windows facing the midtown street. Randy has his exercise equipment close by and when he’s up to it, he can take walks along city streets and in parks filled with life.
Home is the best choice for patients living with dementia, said Samantha Holden, MD, a behavioral neurologist with the University of Colorado School of Medicine, but it’s not easy to make that happen. Holden sees that firsthand in treating dementia patients in her clinic at University of Colorado Hospital.
“The amount of money we spend on institutional care is exorbitant, and it’s often not good care,” Holden said. “I hear every day in my clinic from caregivers who want to keep their loved ones at home, but as the dementia advances, behaviors become more and more stressful, not only to patients but also to their loved ones.”
Pills don’t provide an answer, Holden added. Medications can address anger, fear and depression at least temporarily, but they also can make patients sleepy and docile – depriving them of a measure of their humanity.
“That’s not necessarily what we want for patients who are also medically fragile,” Holden said.
Lacking a magic pill to reduce the burden on caregivers while helping patients, Holden turned to music. She launched a small study, recently completed, that used structured sessions at Rehabilitative Rhythms, an Aurora-based facility staffed by music therapists who are certified to treat neurologic conditions with evidence-based techniques. ProjectSpark, which supports education and research for Parkinson’s disease, funded the study. Another goal was to give patients and caregivers the tools and skills to continue the neurologic music therapy at home.
“I was looking for something that is safe, non-invasive and fun that might jog the brain in a creative way,” she said.
The right notes
The Schiells joined the study after hearing a presentation by Rebekah Stewart, MA, MT-BC, a neurologic music therapist at Rehabilitative Rhythms, during a meeting of their Parkinson’s disease support group at a church in southeast Denver. Stewart assured the group that they didn’t have to play an instrument or have special music ability to be part of the study. The idea was to use music as an entrée to areas of the brain where memories, emotions and imagery reside – places shrouded by the advance of brain cell death and dementia.
Contrary to popular perception, there is no “music center” in the brain, Stewart said. “Music is processed all over the brain,” she said. “That’s what makes it a unique tool in treating neurologic injury.” Neurologic music therapy is well-established, for example, as a method for helping to improve gait and balance in stroke patients and those with Parkinson’s disease and other movement disorders. In another class, Stewart leads a class of Parkinson’s disease patients through singing exercises designed to strengthen their voices, which the condition often damages.
Music’s connective range includes regions of the brain that store both short- and long-term memories. Through a biologic process known as encoding, the brain essentially imprints perceptions, including sight, sound, smell and taste. The most powerful of these fire neurons, making them more vivid and intense and thus more likely to be recalled when they recede from immediacy to memory. It is this process that explains why an individual’s brain sorts through the countless points of perception in a lifetime and retrieves a small number of them again and again. Music is a frequent spark that brings an individual’s memories vividly to life.
Dementia doesn’t ravage the brain uniformly, Stewart said. “Certain areas decline more rapidly than others,” she said. “Some areas that are preserved may be involved in music and memory and recall, and information tied to music may include experiences and imagery.”
As Holden put it, “There is a tie between memory and emotion that is stronger than pure memory alone.”
Lighting the darkness
The six-week program she designed for the study included exercises designed both to tap into memory and to strengthen cognition. Patients and caregivers were asked to pick songs with special personal meanings. During sing-alongs, Stewart and her fellow therapists encouraged patients to complete phrases in the familiar songs. In exercises with percussion instruments, such as rain sticks, patients accompanied the songs to completion and improvised as the therapist played guitar or piano. Patients also worked with tuned instruments, listening to a short series of notes and deciding which should come next. In another exercise, they used color-coded tone bars to duplicate chords played by the therapist. Other exercises focused on mood and memory with theme-oriented song choices that prodded patients and caregivers to explore and describe their feelings.
“It’s an hour of tasks focused on specific areas of skills, using music as the medium,” Stewart said. Just as importantly, the sessions helped patients to engage with their caregivers and others in the world outside themselves, she said.
“This is a patient population with a degenerative disease,” she said. “They won’t interact as others do. We want to treat them as we would other people and interact with them at a human level. [Dr. Holden’s] study was about patient and caregiver empowerment.”
The exercises “allowed us to connect,” said Janelle Schiell. Stewart played songs “that sparked something in us,” she said – tunes that summoned memories of dancing and evocations of bonding before and after their marriage in 1974 at St. Thomas More Catholic Church in what is now Centennial.
For Randy the memories also extended into his childhood, with songs from a deep-rooted folk tradition expressed by the 19th century popular composer Stephen Foster. The son of an enlisted Air Force man, Randy was born in the medical center on the old Fitzsimons Army Base whose grounds are now home to the University of Colorado Anschutz Medical Campus. Among the two dozen or so places the family lived was Moody Air Force Base in Valdosta, Georgia, not far from the Stephen Foster Memorial in White Springs, Florida. With money tight, he and his family sometimes filled the car with gas and made a day of a drive to the memorial, stopping at the welcome center for a glass of orange juice, he recalled.
Years later, he and Janelle visited his childhood home in Valdosta, where they found the house he lived in still standing, surrounded as before with the chinaberry trees whose fruit provided ammunition for friendly kid fights. They walked to the church he attended, where he remarked how much smaller it seemed compared to its size in his youthful mind’s eye.
These memories explain why Stewart played Foster tunes like “Camptown Races” and “Oh, Susannah,” during the music therapy sessions. For Randy, their sounds shone light into darkening spaces of his mind.
Stephen Foster notwithstanding, when asked to name his “favorite band of all time,” he quickly responded with Led Zeppelin while giving Lynyrd Skynyrd a mention.
“That’s the reason he wears hearing aids,” Janelle put in, but added he also likes to listen to “old country,” a taste she doesn’t share. That spurs Randy to comment that the sounds of country-and-western pioneers Buck Owens and the Buckaroos produce particularly pleasant echoes from his childhood.
“That music reminds me of my mother,” he said.
He and Janelle don’t use the music therapy techniques they learned now, but CDs fill two vertical storage cases, and son Chris and his girlfriend, Margery Tran, downloaded all the music to his computer last Christmas.
“I like the energy that I get listening to music,” he said. “There are certain songs that provide me with a positive outlook. They get me out of the mood when I’m feeling low.”
A way home?
Holden noted that the American Neuropsychiatric Association recently accepted an abstract of her study, but she readily acknowledges that neurologic music therapy is not a panacea for patients with dementia and the caregivers straining to care for them. Nearly half those enrolled in her study didn’t finish the six-week protocol. Those who did achieved some temporary improvement in their quality of life and caregivers generally said they felt their burden lightened. But the effects were not sustained, nor would one expect they would be in patients with a progressive disease.
One take-away, Holden said, is the chances of improvement decrease for patients with moderate to severe dementia – whom the study targeted.
“Those who withdrew from the study generally had a lower quality of life to start, with more behavioral symptoms,” she said. “We were getting to them too late, when caregivers were already stressed and overwhelmed.” Starting the therapy earlier, when dementia symptoms are relatively mild, might yield greater success, Holden said.
As Stewart pointed out, it is difficult to measure success in treatments for dementia, about which so much remains a mystery. But intangible improvements shouldn’t be ignored, she added. Giving a weary caregiver inspiration to pull out some old records and gain renewed sustenance from forgotten sounds and encouraging them to make music a part of daily life for both themselves and their loved ones can count for a lot, she said.
It’s easy to see the strain of caregiving as Janelle helps Randy struggle up from his chair, grasp the handlebars of his walker and move with difficulty to his bedroom to rest. Watching them, one sees that her recent retirement as a paralegal was necessary to take on this full-time job, helping her husband through a difficult journey.
But for now they will travel it along familiar ground, not the sterile corridors of a nursing home. And at home there will be comforts, found in the music, the paintings and the photos of a rich past that look down on them as Randy pushes the walker down the hall with Janelle keeping a watchful eye.