Recently, celebrating the holiday at our local gym, I was seated at a table filled by my peers diagnosed with Parkinson’s Disease and their spouses. We had become friends while participating in a boxing program for designed for persons with Parkinsons.
“I have REM Behavior Sleep Disorder” I announced very matter of factly. The response, “What is that!?” someone asked. I responded, “REM Behavior Sleep Disorder (aka RBD) is a sleep disorder that causes people to act out their dreams while in the REM stage of sleep. “Basically, you are physically and/or vocally acting out your dreams.” A couple of the ladies chuckled and proceeded to divulge the ‘acting out’ behavior they have witnessed from their spouses over the years. Soon, everyone was laughing about what they had done during their sleep or, told they had done during their sleep. It was almost unanimous, everyone of my friends around this table had this experience and, they all have Parkinson’s Disease.
It is quite common for persons with Parkinson’s Disease to have difficulty with sleep; either lack of sufficient amount of sleep or quality of sleep but, this was something new to me. In fact, I was shocked how common this complaint was among my peers.
Doing my own research, I learned that not only is REM Behavior Sleep Disorder (RBD) common in persons with certain neurological disorders, conversely, the vast majority of RBD patients will eventually develop a neurodegenerative condition specifically, Parkinson’s Disease, Lewy Body Dementia or Multiple System Atrophy (MSA). Also, the incidence of RBD increases with age.
Symptoms of RBD include:
Kicking, punching, arm flailing, or jumping from bed
Talking, laughing, shouting, emotional outcries, or cursing
Being able to recall the dream if you awaken during the episode.
RBD can be mild and happen occasionally, or it can be so violent that it injures the individual or their bed partner. The disorder often worsens over time.
We laughed along with a friend who described calling out for “mama” during the night. I recounted how I had delivered three right hooks, a boxing punch, to my adjacent pillow during a very vivid and threatening dream. This could have had a serious, if not disastrous, outcome for myself or my bed partner.
This event prompted my consultation with a Sleep Medicine physician. At his recommendation, I had an in-the-lab, overnight sleep study. My sleep study results were interpreted as a diagnosis of REM Behavior Sleep Disorder.
But what does one do with this information? Presented with treatment versus no treatment, I felt obligated to myself and my husband to explore treatment options. There is no cure for RBD. The goal, as shared by the physician, is to control the ‘acting out’ or specifically, the motor symptoms of RBD.
Treatments include:
Lifestyle changes (refrain from alcohol, develop consistent bedtime and wakening schedule)
Medication (melatonin or clonazepam is considered 1st line treatment)
Injury prevention techniques (such as removing sharp objects from the bedroom, padding the floor, and installing padded bed rails, moving nightstand away from the bed)
At the recommendation of the sleep specialist, I am taking the prescribed treatment of high dose melatonin nightly. This is a dose of 10-12 mg of melatonin administered one hour before bedtime. I am also recording details of my sleep for the next 6 weeks. I am paying close attention to consistency in sleep schedule and documenting medication and alcohol consumption that can also be a trigger for RBD.
I can say that I have not had any recent occurrences of physically acting out my dreams or even vividly violent dreams as I had in the past. I have been told I was talking quite loudly and clearly during my sleep on a night when I dreamt I was giving a speech! Another occasion where I had quite a belly laugh for several minutes. Too bad I didn’t recall that dream!
Are the medication or new sleep hygiene practices I’ve put into place helping? For me, I think it is too early to tell. I am willing to adapt to healthier behaviors if it helps to keep myself and the people around me safe from harm. In my mind, it is another one of the challenges that Parkinson’s Disease can throw at us to test our resilience. Seriously, if you experience the nighttime behaviors or symptoms described above, I encourage a dialogue with your bed partner and your physician. RBD is no laughing matter.
REM sleep behavior disorder (RBD) most commonly affects people over the age of 50. The average age of onset is 61 years.
REM sleep behavior disorder (RBD) is relatively rare. It affects about 1% of the general U.S. population. These rates may be higher in reality, as RBD can be difficult to officially diagnose, and almost half of people with the condition don’t realize they have it.
(RBD) is a sleep disorder that involves unusual and undesirable physical events or experiences that disrupt your sleep.
REM sleep is when you tend to have vivid dreams. You have several REM cycles per night. The first REM cycle begins about 90 minutes after you fall asleep and lasts about 10 minutes. Each REM cycle that follows gets longer and longer.
There are two main types of RBD: isolated (idiopathic) and symptomatic (secondary).
Isolated or idiopathic RBD happens when the condition develops spontaneously without an underlying cause. Most people with idiopathic RBD will eventually develop a neurodegenerative These conditions are called alpha-synucleinopathies.
RBD is a sleep disorder that causes people to act out their dreams while in REM sleep. During REM sleep, people with RBD lose the normal paralysis of their muscles, allowing them to physically and vocally act out their dreams
RBD can cause sleep disruption and injuries to the patient or their bed partner.
There's no cure for RBD, but treatments can help control the motor behaviors. Treatments include:
Lifestyle changes
Medication
RBD is more common with age and has been associated with certain neurological disorders. In fact, the vast majority of RBD patients will eventually develop signs and symptoms of Parkinson's disease or a related disorder.
RBD can be mild and happen occasionally, or it can be so violent that it injures the individual or their bed partner. The disorder often worsens over time.
RBD is diagnosed with a sleep study, which can evaluate for other sleep disorders and confirm abnormal muscle tone during REM sleep.
It can also affect children and younger adults, but this is rare.
Among people over age 50, men and people assigned male at birth are nine times more likely than women people assigned female at birth to have RBD.
RBD is strongly associated with certain neurodegenerative disorders. About 97% of people who have isolated (idiopathic) RBD will have Parkinson’s disease, Lewy body dementia or multiple system atrophy within 14 years of diagnosis.
REM sleep behavior disorder (RBD) is relatively rare. It affects about 1% of the general U.S. population.
These rates may be higher in reality, as RBD can be difficult to officially diagnose, and almost half of people with the condition don’t realize they have it.