Living with REM Sleep Behavior Disorder

Written by M of NY, a Caregiver to her Husband:

Several years ago, my husband began, some evenings, yelling and laughing, punching the air, and flailing his arms and legs around in his sleep–even once throwing himself into a corner of the nightstand. Other times, he had minor muscle jerks in his hands and legs, all without waking up. He would have no memory of these experiences in the morning, or if I woke him up during one of these times. To stay out of harm’s way in the evenings, I’d move to another bed to sleep. We had purchased a larger mattress, for more room for him, but that did not help.

I knew that some people acted out dreams in their sleep, as in post-traumatic stress disorder with combat veterans. But he hadn’t been in combat or had recent trauma. At first, when he was just apparently punching bad guys in his dreams (and in the mornings no bad guys were present), we laughed it off and said that he must have been effective in fighting them off. But it was disconcerting.

We asked my husband’s doctor to arrange a sleep study. I saw an article in The New York Times, written by Alan Alda, who knew the link between REM behavior disorder and Parkinson’s disease, and, although he didn’t have a tremor or a shuffling gait, and his doctor did not think a brain scan was needed, it was done. Apparently, this was basically because Alan Alda is a celebrity and insisted. It showed that he did have Parkinson’s disease.

At that time, we did not know that this symptom in sleep often meant that the person already has a neurodegenerative disorder like Parkinson’s disease (PD) or Lewy body dementia, or will develop it.“In fact, among the early clues for PD, RBD is special…it’s the strongest clinical prodromal marker we have” (When Dreams Foreshadow Brain Disease, in Scientific American (February 2023). And “some studies suggest that enacted dreaming predicts a more than 80 percent chance of developing a neurodegenerative disease within the patient’s lifetime.”

The acting out of my husband’s dreams has continued. This is currently happening even during the day when he falls asleep, when watching television or reading or riding in a car. This is disconcerting but the neurologist says it isn’t worrisome.

For me, though, it can feel weird to be in an activity with him, and not know if he is wide awake or partly asleep—and that when he is talking, it might be from something in his dream, and not something related to the activity I think we are sharing.