Ray Merrell, a patient advocate and ASAP board member, was diagnosed with obstructive sleep apnea and rapid eye movement sleep behavior disorder (RBD) in 2011. He encourages patients to participate in clinical studies in researchers' drive to develop and test disease-modifying therapies.
Have you ever experienced a dream so action-packed and vivid that when you woke up, it felt very real and took a few seconds to recognize that it was a just a dream? Most people experience these dreams to some extent and can often return to a calm sleep for the remainder of the night.
A few people actually act out their dreams, specifically during the deepest part of their dream cycle known as Rapid Eye Movement (REM) sleep. My first memory of dream enactment was during the summer of 2007. I don’t recall the dream, although do remember moving in my sleep that seemed related to what I was actually dreaming about. At the time, I just thought it was stress-related, since work was challenging at the time. These dream enactments were occurring a few times a month with various degrees of movement. I didn’t think too much about them for the first few years.
My wife would often nudge me during the night to stop snoring. My family also accepted my afternoon napping on weekends when I got a chance. I didn’t feel overly tired, although I valued my sleep, and staying up late was getting harder to pull off without having a rough time waking up. My life was busy at home and work, including frequent business trips, then returning home to life’s activities, including supporting our two daughters through their college years and early adulthood.
In late-2008, I was packaged out of my job after nearly 25 years as the economy took a nosedive. My dream enactments were becoming more frequent and active and often involved kicking and throwing my arms across my wife, who would nudge me harder to wake up. Going back to sleep, I would often re-enter the dream to only wake up again kicking, punching the air and again waking my wife. My dreams were becoming more violent. Often, I was being chased or fighting off people or creatures, acting out what seemed to be very real movie scenes. Again, I attributed my active dreaming to work stress. My dream enactments were becoming more frequent, occurring several times a month.
I was fortunate to land another job in the spring of 2009, advancing my career to lead the Environmental, Health and Safety department at a diversified multinational manufacturing company. This was a very demanding role, in which I was tasked with restructuring the department while on a steep learning curve with a new company. Life had become more complicated and demanding, with a new job and extensive business travel, returning home to now planning the wedding of our oldest daughter, and our youngest daughter in graduate school.
My wife is very supportive, especially through my career transitions while she was going full-time from part-time work as a dietitian. She continued to nudge me awake out of my snoring and dreams which became even more active and frequent. By this time, I started occasionally finding myself on the floor, having thrown myself out of bed during a chase or in defense from attack. My wife was also becoming more adapted to defending herself, catching my arms or just moving away.
My dream enactments traveled with me while I was on the road. I was still attributing my dreams to work stress until the night I launched myself into the corner of the hotel nightstand, breaking the skin near my sternum. I narrowly missed becoming seriously injured, potentially killed. Between my heaving snoring and dream enactments, I consulted a pulmonologist, who ordered an overnight sleep study, or polysomnogram, in June 2011. I was diagnosed with obstructive sleep apnea (OSA) and rapid eye movement sleep behavior disorder, known as RBD.
The pulmonologist set me up with a continuous positive airway pressure (CPAP) machine for the OSA and casually mentioned the association of RBD with an increased risk of developing a neurodegenerative condition later in life, such as Parkinson’s disease (PD). He prescribed clonazepam (Klonopin) along with a melatonin supplement for the RBD. The dosages are another story: after several weeks of experimenting on my own after reading about RBD on the internet, I settled into taking 2 mg of Klonopin at bedtime and 10-15 mg of over-the-counter melatonin before bedtime. I was effectively paralyzed during REM sleep, so I stopped acting out my dreams, although I continued dreaming on the wild side.
If you, a family member, friend or anyone you come across experiences dream enactments, suggest that they seek medical attention and request a sleep study. Many medical professionals are not familiar with RBD and people have to advocate healthcare for themselves. For additional information on RBD, learn more on the research study site naps-rbd.org.