RBD
Of all the absolutely bizarre things I have dealt with for 15 years of Parkinson’s Disease, RBD may be the strangest. RBD stands for Rapid Eye Movement Sleep Behavior Disorder and you may have never heard of it. Like most things involving PD, we don't know much about it and there isn’t much solid science available or a cure. In this blog, I’ll let you in on what we do know and how RBD has impacted me. RBD has been a frequent uninvited guest in my bedroom for quite a while now and I've learned much about it through my own experience and talking to others about their experiences. As always, your mileage may vary and nothing said in this blog should be taken as a recommendation.
Rapid Eye Movement Sleep Behavior Disorder is defined as “loss of normal skeletal muscle atonia during rapid eye movement sleep with prominent motor activity and dreaming.” In other words, it means that the normal systems that induce paralysis while we are in REM sleep, don't work so well or don't work at all, for many of us who have Parkinson's Disease. What this means is that all of your emotions, speech and movements are readily available to you, real time, while you are in the midst of dreaming. Unlike most people, you don't lay quietly still and passively dream. Rather, you are actively present, in the moment, fully participating. You can only begin to imagine what this may be like for the dreamer and their bed partner, much less their relationship.
The Science
Here is what science tells us about RBD.
There is no known cause
RBD does not seem to run in families
Onset is usually after 60 years old
Lifestyle and health factors correlated with developing RBD generally include smoking, excessive alcohol consumption, cardiovascular issues, stress, lower socio-economic levels, employment involving the usage of toxic materials, persons with other advanced disease profiles and use of SSRIs (most common usage of SSRIs are antidepressant drugs commonly prescribed to PwP)
Male (There is current speculation, however, that the real male/female mix may be closer to 50/50. Just as in the early research involving PD, women have not been included in research or clinical trials, leading to erroneous conclusions regarding women and RBD)
There is a diagnostic delay (the time period between the symptoms beginning and actual medical diagnosis) is 7 - 9 years
A great deal of stigma and reticence to see or talk to a doctor about RBD is prevalent
The onset of the disorder can be gradual or sudden
Symptoms can be occasional or appear several times in one night
Often RBD will disappear for a period of time and then reappear
Dream content is likely to be remembered since normal memory circuits remain open and operational during RBD
One can fully awaken from a RBD event, fall back to sleep, and subsequently return to the same dream
Common RBD episodes may include talking out loud, cursing, yelling, screaming, shouting, lengthy conversation with someone appearing in the dream, issuing warnings, punching, kicking, strangling, biting, pushing off, sitting up, running, moving backward in retreat, jumping or falling out of bed
RBD dream states normally are described as vivid, realistic and intense
A high percentage of violent dreams occur in RBD episodes
RBD episodes do not usually include sleepwalking
RBD's Relationship With Parkinson’s Disease
A very interesting side note to RBD and Parkinson’s Disease has been discussed, documented and is currently under additional scientific scrutiny. The relationship between RBD and Parkinson’s Disease seems to be a predictive one. A 2014 study studied 174 patients who had been diagnosed with RBD. Within 5 years of being diagnosed with RBD, 33% had also been diagnosed with Parkinson’s Disease. At 10 years, it was 76% and at 14 years after their RBD diagnosis, 91% also carried a Parkinson’s Disease diagnosis. Current estimates are that at least 40% of PD patients are concurrently developing RBD. Research continues investigating the relationship between RBD and Parkinson’s Disease. The development of RBD seems to be an early warning sign of PD and the PD community needs to be informed of this relationship. Perhaps this research will assist in the current efforts to develop better methods of diagnosing Parkinson’s Disease. Further, the appearance of RBD in patients diagnosed with PD have been shown to correlate with more rapidly advancing Parkinson’s symptoms and the emergence of greater cognitive impairment.
My History and Experience With RBD
Like many PD experiences, RBD has been both difficult and challenging. First, I’ll describe how RBD shows up in my bedroom. The episodes seem to come and go. This is not uncommon for many PD symptoms. I can go for several days without any symptoms, but for no identifiable reason, they will return with a vengeance. It is not uncommon to have 2 or 3 different sessions in one evening.
There is a range of RBD manifestations, the least intrusive is a dream in which I am having a conversation with someone and I speak my part of the conversation clearly and out loud. The dream setting could be a party, a classroom, or during an activity within the dream (viewing TV, eating, driving, at a bar or just talking). Conversational jokes, perceptions, evaluations, desires and emotions flow freely. My half of the conversation is unedited, understandable and available for anyone within earshot. Often they are laced with profanity. Think for a moment, of the potential for embarrassment or the quandaries one may experience if their conversations occurring within their dreams are readily available for their bed partner to hear. These conversations can go on for quite a while and usually don't end until the volume of my speech or my bed partner awakens me.
Moving up in intensity, the verbalizations can take on an agitated, frightened, judgmental, angry or even furious tone and content. The volume goes up. The speech is more intense, threatening, profane and the physical movements begin and intensify as the temperature of the dream goes higher. Lashing out at an enemy or attacker with pushes, jabs or closed fists in full punching mode emerge. Within the dream, you are under attack so the natural response is fight or flight and both present with large and powerful movements.
Another type of dream appears similar in intensity but without the powerful emotions, yet are just as intense. In these dreams, I am not in danger or under attack, but still completely engaged. They are also characterized by full vocalization and movement. For example, I am playing in a very competitive game of basketball where I am dribbling the ball, running and bumping into others, finally muscling my way up to the rim to shoot and then rebounding the basketball. Often in the dream, I fall to the floor with other players below and/or above me. Can you imagine a bed partner awaking in the midst of an NBA basketball game and someone who thinks their bed partner is LeBron James is exerting enough force to get by and to the hoop? I’m 6’1” and just shy of 200 lbs, full of determination to score this goal. Or, in the dream I could be struggling to move, carrying or dragging something very heavy up a steep hill, a dangerous roadside cliff or an icy crevasse. Bed covers in tight grrip being pulled and then released causes one to crash down hard and react accordingly. The silence of the bedroom can be suddenly full of grunts or piercing screams of terror from a fall off a cliff.
The most intense of all RBD events is what I call the “Epic.” This is a full blown event that lasts what seems to be the whole night. There is an intricate and well developed plot line. I can fully awaken and then drop right back into the same dream. Themes of these epics vary and can include sexual innuendo and encounter. Recently, a complicated and intricate cat and mouse game to avoid an enemy who stealthily pursued me and my cohorts summoned quite a bit of movement. There were startling surprise pop ups, physical battles, and breathless hideouts. They are beyond real and extremely vivid. You are not idly watching but are viscerally in the reality of the moment. Increased heart rate, heavy breathing, perspiration, grunts and tightly clenching the sword are all real. Often family, friends, or kind, gentle villagers must be defended at all cost from various forms of evil. Or my own version of a 007 or Indiana Jones film, complete with villains, special effects and mysterious, beautiful co-stars.
Clear and Present Danger
As you can see, RBD is not to be ignored. The potential for serious injury to self and bed partner is very real. The resultant shame, frustration, embarrassment and guilt can be intense. A bed partner can easily be injured while in close proximity to the person experiencing RBD. Bed partners may be sleeping and completely vulnerable to the danger. While it is a good idea to awaken the sleeper experiencing RBD as quickly as possible, it is best to do so verbally while a safe distance away. Touching the person who is dreaming can elicit an aggressive response as the dreamer mistakes the touch for an attack. At some point, it may become necessary for couples to sleep in separate beds. This has happened in my case, and becomes one more challenge presented to couples living with PD and dealing with the onslaught of issues that can destroy relationships. This is an issue that calls out for additional dialogue, honesty and resources for our entire community.
Other basic safety measures are
Placing pillows on the floor around the perimeter of the bed to protect against falls out of bed while avoiding any trip hazards for someone making a middle of the night bathroom visit
Making sure there are no sharp corners or edges around the bed or night stands
Consider padded bed rails
Placing pillows between sleepers to create a “neutral zone “
Block any windows that may be near your bed
Have nothing in, on or around your bed that could be used as a weapon
Avoid excessive alcohol consumption
Next
Speak to your doctor, neurologist or movement disorder specialist about RBD should you have any concerns. They can make pharmacological recommendations if you desire Clonazepam has proven to be a highly successful treatment for RBD. It is effective in nearly 90% of patients
If you are currently taking a SSRI for depression, ask your doctor about switching to a NDRI
Schedule a session with a shakynation.org Coach (all have PD and some have personal experience with RBD)
Seek feedback from your bed partner. RBD often goes undetected and unreported for far too long. Don’t wait until someone gets injured
Consider a Sleep Study if you are beginning to experience symptoms. Ask your doctor
Educate yourself and your family about RBD
Many find an over the counter supplement named Melatonin to be quite effective. I find it to be the most helpful tool available and currently use 10mg - 20mg just prior to bedtime