Key takeaways
- Some people physically act out their dreams. They may punch, kick or yell while asleep. This condition is called REM sleep behavior disorder, or RBD.
- RBD may be an early warning sign of Parkinson's disease.
- The Michael J. Fox Foundation's Parkinson's Precision Medicine Initiative, or PPMI, is studying people with RBD to better understand Parkinson's disease.
- Participating in research can help advance earlier diagnosis, better treatments and future prevention strategies.
Have you ever been told you talk, shout, punch or kick while dreaming? These nighttime behaviors should not be dismissed as unusual sleep habits. They may point to REM sleep behavior disorder (RBD), a condition researchers say could offer important clues about future brain health, including Parkinson's disease.
What is REM sleep behavior disorder?
During normal dreaming, the brain keeps the body's muscles from moving. In people with RBD, that process does not work properly. As a result, they may physically act out their dreams instead of remaining still.
Dreams in RBD can be intense, often involving sports, running, or being chased or attacked. People may kick, punch, yell, sit up or even leave the bed while asleep.
For Art Gregoire, 74, of Palm Springs, California, acting out dreams became frighteningly real when he dove out of bed during a vivid dream and suffered a concussion. “I knew at that moment my life was going to change,” Gregoire said. “It was a pivotal moment, and I needed to find out what was going on.” That experience eventually led him to PPMI, where he learned he also had a reduced sense of smell, another early Parkinson's risk factor.
“Participating in PPMI has meant I'm not sitting at home waiting and worrying about what might happen in the future. Instead, I've chosen to take a proactive path. Knowing that I'm helping researchers better understand Parkinson's disease gives me hope — not just for my own future, but for everyone who may one day face this journey.”
How is RBD connected to Parkinson's?
Not everyone with RBD will develop Parkinson's disease. Even so, RBD is considered a risk factor for Parkinson's and other brain diseases. It is often one of the earliest signs, appearing years before the movement symptoms usually linked to the disease.
Researchers are especially interested in people with RBD because studying this group may help identify the earliest biological changes associated with Parkinson's disease long before movement symptoms begin. For that reason, The Michael J. Fox Foundation for Parkinson's Research encourages people who notice RBD symptoms to consider joining studies such as the Parkinson's Precision Medicine Initiative.
What is the PPMI study?
PPMI is a major study sponsored by The Michael J. Fox Foundation that is designed to improve understanding and measurement of Parkinson's disease, including its earliest stages before movement symptoms appear.
Every volunteer adds information that helps move research forward.
Why should I participate in the PPMI study?
PPMI researchers are looking for people diagnosed with RBD, as well as people who regularly act out their dreams during sleep. By taking part, volunteers can help scientists learn more about who develops Parkinson's disease, who does not, and why. The study may also offer valuable insight into the biology and lived experience of RBD.
Learning that your sleep habits could point to a Parkinson's diagnosis may feel unsettling, but joining a study can be a meaningful and empowering step. After his RBD diagnosis, Gregoire found hope through participation in the PPMI study at the University of California, San Diego.
How can I participate in the PPMI study?
Every volunteer contributes valuable information that helps move research forward.
“Learning that you may be at increased risk for Parkinson's disease can feel overwhelming. But while we don't have all the answers, research gives people a meaningful way to turn uncertainty into action,” said Rachel Dolhun, MD, DipABLM, a double-board-certified neurologist, lifestyle medicine physician, fellowship-trained movement disorder specialist and principal medical advisor at The Michael J. Fox Foundation. “By participating in studies like PPMI, people with REM sleep behavior disorder can play a vital role in helping researchers better understand the earliest changes associated with Parkinson's disease. Every person who joins brings us closer to earlier interventions, better treatments and, ultimately, ways to prevent the disease before symptoms begin.”
To learn more about Parkinson's research opportunities and whether you may be eligible to participate in the PPMI study, visit MichaelJFox.org/Sleep.
Participation may include online questionnaires, health assessments and, for some volunteers, opportunities to take part in research sites near their homes.
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