“I used to laugh at it and call it ‘The Wes Show,'” said Eileen Mills, 49, of Taos, New Mexico
But she doesn’t find it funny anymore.
Wes Mills, a contemporary artist with work at The Whitney and MoMA, can’t hold a pencil still for over a year. His tremors started on one side of his body and now affect both sides. In January, aged 63, he was diagnosed with Parkinson’s disease.
Researchers say that dreaming can indicate health problems, one of the most common and serious of which is the future onset of Parkinson’s disease. Wes Mills began fulfilling his dreams more than 10 years before his first tremors appeared. Other common conditions that can lead to dreams are obstructive sleep apnea and post-traumatic stress disorder (PTSD).
Those who regularly act out their dreams should see a doctor and undergo a sleep study to uncover the root cause of their behavior, experts say.
Why people follow their dreams
When transitioning to rapid eye movement (REM) sleep, where dreaming occurs, the body usually enters a state of near-total paralysis to prevent the dream from happening. But some people—roughly 1 percent of those over 50—lose this paralysis.
This chronic sleep condition, known as REM sleep behavior disorder, or RBD, occurs most often in men in late middle age, researchers have found.
“The brainstem has two connected nuclei that generate the protective paralysis of REM sleep, and when one of them or their connecting pathway is damaged, it releases muscle tone,” said Carlos Schenck, a psychiatrist at the Minnesota Regional Sleep Disorders Center. “Then people can act out their dreams.“
In 1986, Schenck and colleagues first described RBD in four men and one woman aged 60 years or older. Most had a long history of injuring themselves or their partners in bed with aggressive behavior while they slept. One patient tried to strangle his wife while dreaming of fighting a bear, while another knocked over furniture while dreaming of being a football player. The researchers note that RBD is distinct from sleepwalking, which originates from non-REM sleep.
Dreaming behavior has also been documented in severe obstructive sleep apnea, as it causes people to suddenly stop breathing for short periods during sleep and partially wake up. Because these breathing stops are most frequent and severe in REM sleep, they can act out their dreams, mimicking the symptoms of RBD, Schenck said.
About 39 million adults in the U.S. have obstructive sleep apnea, according to the National Council on Aging, but how many of these adults are fulfilling their dreams is unknown.
Similarly, those with PTSD may show signs of reliving their trauma through dreaming. Approximately 70 percent of PTSD patients report sleep disturbances, and up to 70 percent have recurrent nightmares. However, there is no data on the prevalence of dreaming behavior in PTSD, Schenk said.
The relationship between RBD and Parkinson’s disease
For those with RBD, the risk of Parkinson’s is staggeringly high. Individuals age 50 and older with idiopathic RBD — which occurs spontaneously without other health complaints or recent changes in medications — are 130 times more likely to develop Parkinson’s disease than someone without the sleep condition.
“There is nothing like it. … 80 percent of people who have this disease develop Parkinson’s disease 15 to 20 years later,” said Ronald Postuma, director of neurology at McGill University Health Center.
RBD was 10 times better than any other clinical marker – for example, an abnormal motor exam or loss of smell – at predicting the eventual onset of Parkinson’s. RBD is also highly associated with other synucleinopathies, a group of diseases that includes dementia with Lewy bodies and multiple system atrophy.
Misfolded alpha-synuclein, a protein, is thought to play a role in both idiopathic RBD and Parkinson’s disease and other synucleinopathies. When the misfolded protein accumulates in large, toxic clumps in the brain, it can disrupt nerve cell function and cause symptoms of Parkinson’s disease such as tremors and stiffness.
The brains of people with idiopathic RBD have enough misfolded alpha-synuclein to affect their REM sleep, but the harmful protein has not spread further into the brain, experts say.
Less commonly, RBD can be caused by a stroke, a tumor, or medications such as some antidepressants.
What to do after an RBD diagnosis
RBD provides a unique opportunity for researchers to study early Parkinson’s disease, its progression and preventive therapies. For example, Michele Hu, a professor of clinical neurology at the University of Oxford, led a randomized placebo-controlled trial in patients with RBD that tested whether a drug could reduce brain inflammation, an early feature of Parkinson’s disease.
“We know that lifestyle changes, such as exercise, also reduce the progression of Parkinson’s disease, so there is even more reason that they are likely to be effective in RBD,” Hu said. “And that’s what I tell all patients we diagnose with RBD.”
People with RBD diagnosed through a sleep study can enroll in the RBD Registry, created by the North American Prodromal Synucleinopathy Consortium (NAPS), which aims to develop treatments that will prevent or delay the onset of neurodegenerative disorders associated with RBD. The Michael J. Foundation Fox is also looking for dreamers to participate in the Parkinson’s Progression Markers Initiative (PPMI) to identify biological markers of Parkinson’s risk, onset and progression.
“You have to plan your life accordingly — retirement planning, financial planning, taking those trips with your family that you’ve been putting off,” Schenck said. “I think knowledge is really very useful in terms of planning life, not just doom and gloom.”
Eileen Mills is trying to find a balance between living in the moment, such as taking walks with her husband and their dog, and making the necessary preparations based on his recent diagnosis, such as long-term insurance. And Wes Mills still loves to create art. He’s focused on things he can do, like sculpting and woodworking.
“When it became very obvious that he couldn’t hold a pencil still, he didn’t even miss a beat. He immediately took to a new environment,” Eileen said. “Wes is honestly the most extraordinary human being I know.”
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