About 20 years ago, Murray Engelkemier made a routine stop to pick up some dry cleaning. The ordinary errand took a turn, however, when he began making out a check for his order.
“It was hard to write with my right hand,” Engelkemier recalled. He soon discovered that the trembling was the result of Parkinson’s disease (PD), which causes degeneration in areas of the brain that control movement. The motor symptoms of PD include the tremor that affected Engelkemier, as well as stiffness, slowed movements, balance problems and more.
Engelkemier, now 65, treated his disease with medications designed to increase the levels of dopamine in his brain. Dopamine is a chemical that plays a key role in nerve signaling that enables movement. His symptoms continued to progress, but the treatments worked well enough that he was able to continue for well over another decade in his role as a project and program manager with U.S. Bank.
“I was pretty good until the last three years of my career,” Engelkemier said. Over that final period, he said he “burned out” with monthly work-related travel to Spain, leading him to take disability and retire.
His biggest movement-related problem has been leg stiffness that causes him to shuffle and drag his feet.
“My mind is always getting ahead of my body,” Engelkemier said. But another problem not related to movement also plagued him: regularly disrupted sleep.
“I would wake up at 4 a.m. and could not go back to sleep,” Engelkemier said. “My mind was racing. The fatigue detracted from my quality of life.”
Solving the Parkinson’s disease sleep problem
His problem is not unusual, said Dr. Alexander Baumgartner, an assistant professor of Neurology with the University of Colorado School of Medicine who practices with UCHealth.
“We think of Parkinson’s disease as having a lot of motor symptoms, but there are many other, non-motor symptoms, and sleep is one of the most common,” Baumgartner said. He added that people with PD also frequently suffer from mood disorders, cognitive decline and dementia, all of which may be entangled with chronically poor sleep.
“Broadly speaking, improving sleep is a way to promote general brain health, and that could decrease the risk of developing dementia in the future,” Baumgartner said. “However, we don’t have great treatments designed for these non-motor symptoms [of PD]. There is an unmet need.”
Baumgartner now leads a trial that aims to explore whether deep-brain stimulation (DBS), an established surgical treatment for movement-related problems in people with PD, could also help to improve their sleep and their quality of life.
More data needed about the possible link between deep brain stimulation and improved sleep
Baumgartner and his colleagues are recruiting people who are considering DBS, a procedure that involves implanting leads, or electrodes, in the brain and connecting them to another implanted device that generates electrical impulses in particular areas of the brain that control movement. These impulses can help to disrupt and tame the haywire electrical signaling that causes the debilitating movement symptoms of Parkinson’s disease.
Baumgartner said there are indications that DBS might also help patients experience more restful nights.
“We have seen for many years that people who go through DBS often report that they are sleeping better after the procedure,” he said.
The problem is a lack of rigorous research to validate and quantify the sleep-related benefits of DBS, he added. For example, some studies previously conducted after DBS surgery simply asked patients to rate their sleep quality subjectively. A small number of others assigned patients to a one-night stay in a sleep lab, hooked up to a monitor to measure their brain activity. In both cases, researchers were able to glean only limited information.
New approach to gathering information about sleep in people with Parkinson’s disease
Baumgartner’s study, which gathers data from patients before and after their DBS surgery, aims to change that with improved technology. Instead of scheduling time and checking into a sleep lab, recruits complete the trial at home, with a headband device that records their brain activity over a three-night period. The in-home arrangement could improve not only the amount of data collected but also its quality, Baumgartner said.
“[Patients] spend the night in their own bed, so they are acting more naturally and following their normal sleep patterns and behaviors, rather than spending the night away from home in an uncomfortable bed in a lab,” he said. “We’re also able to study them over consecutive nights, so we’re getting more data with people in familiar environments that more closely approximate what their life is truly like.”
Recruits also get a Fitbit-like wristband that they wear throughout the day to track their normal activity, another likely indicator of how well or poorly they have slept. More data comes from looking at sleep characteristics when patients are taking their PD medications, and when they are not, Baumgartner added.
Analyzing both the quantity and quality of sleep
The researchers ask the recruits to wear the devices for a series of several nights leading up to their DBS surgery. After the surgery, patients have a period for healing and adjustments of the implanted system to manage their motor symptoms as effectively as possible. After about three months, Baumgartner and his team approach them for their consent to participate in the post-surgical part of the trial. If they agree, they go through the same routine they followed before the DBS procedure.
The headband yields data that help the researchers evaluate what sleep pattern changes, if any, occurred after DBS surgery. The measurements include how much sleep patients got, how long it took them to fall asleep and how often they awoke after falling asleep.
The device also offers clues to the quality of sleep, such as how long patients were in Stage 3, which Baumgartner explained is especially important for restoring and recharging mind and body and maintaining healthy memory function and cognition. Recruits offer their own perspectives through questionnaires that ask about how well they slept, their energy levels throughout the day, their pain levels, how often they had to get up during the night and other ways they evaluate their sleep.
A sleep change after DBS surgery
Murray Engelkemier said he was initially resistant to the idea of DBS surgery. “I didn’t want anybody drilling holes in my head,” he said. But as his leg problems, in particular, persisted, his providers at UCHealth encouraged him to speak with other patients who had had the procedure, and he was impressed by the positive results they reported.
He decided to seek an evaluation in the spring of 2022, and neurosurgeon Dr. Steven Ojemann performed DBS procedures on both sides of his brain in November and December of that year. Baumgartner, who is his neurologist, also informed Engelkemier about the sleep study, and he agreed to participate.
Today, Engelkemier said he is still working to improve his shuffling gait and control involuntary muscle movement by fine-tuning his DBS programming. His sleep, however, has improved significantly. He said he now regularly gets six to seven “solid hours” of sleep and no longer stays awake after a trip to the bathroom. The changes have improved his quality of life, Engelkemier added.
“I used to be sure to get a nap every day,” he said. “I’ve very seldom needed one since DBS.”
Engelkeimier works to stay active by riding his bike, playing golf and walking. He participates weekly in tai chi with other PD patients at Parkinson’s Pointe, a nonprofit organization that connects people working to manage their disease. He’s also gotten great support through physical therapy and is looking forward to paddleboarding again with his wife.
Of course, Engelkemier’s experience doesn’t itself establish that DBS improves sleep or other non-motor symptoms in PD patients. But Baumgartner said he hopes his study can increase understanding about possible links between the two and perhaps open the door to more research.
For example, he said, researchers and clinicians might learn how to directly intervene with targeted DBS that stimulates specific areas of the brain involved in sleep. That could lead to improvements not only in sleep but also mood and cognition, Baumgartner said.
“We’re learning more and more how critical sleep is for the brain, both in adults with and without Parkinson’s disease and other neurological conditions,” he said. “That’s true for kids and teenagers too.”
For more information on the study, contact Lisa Hirt, [email protected].