Living with REM Behavior Disorder

First, my heart goes out to all of you who suffer from or love someone with RBD. I know all too well the emotional and physical pain it can bring to all involved.

And while I empathize with all of you and your stories, at this moment, I feel somewhat relieved to have found this website. I’ve been searching for what feels like forever to find a forum that doesn’t contain outdated posts written 2 or 3 years ago. That said, here’s my, or rather my Dad’s story…

My Dad is 64 and was diagnosed with RBD about 6 years ago. His story is very similar to those described. He’s done everything from jump through a window, to cut open his head from throwing himself out of bed, to severely damage his hands by beating up the floor and the walls, to throw furniture, to most devastating of all to him, hurt my Mom when they were sharing a bed (which they no longer can do because of the danger this disorder can pose to bed partners).

Aside from the sheer terror he felt, he was also exhausted, confused, growing increasingly depressed and truly feared he was losing his mind. It took 3 doctors before one even suggested RBD and then a sleep study confirmed it. He was prescribed Klonopin and then later they added Remeron, both of which he is still taking to date. He was also prescribed Cymbalta for depression (in the past he had been treated for depression and anxiety with Paxil and Zoloft but was taken off when the diagnosis of RBD was made b/c supposedly they can exacerbate the disorder). He was also diagnosed with sleep apnea and put on a CPAP machine.

Another thing perhaps worth mentioning is that is was discovered that my Dad has a large (about the size of a pear) arachnoid cyst in his right frontal lobe. It is benign and they believe has probably been there since birth. Whether it has anything to do with the RBD, they have no idea (in fact the neurologist we saw had never even heard of RBD and I had to direct him to websites and email him information), and I haven’t been able to find much information saying that it could.

Today my Dad’s sleep has definitely improved, but by no means is his RBD a non-issue. He still has episodes about 3-5 x month. They’re virtually impossible to predict, but stress does seem to be related to it. Whether that’s true or not, I don’t know, but it certainly seems that way. He sleeps in a different room than my Mom and the room is pretty much barren except for a table and a mattress on the floor on which he sleeps. Every night he wears thick, padded gloves to bed to protect his hands in case he beats the floor and he often ties his ankles and his wrists together in an effort to restrain himself and prevent himself from being able to cause himself any physical damage. It’s a sad sight to say the least.

It breaks my heart to see my father live with this. I’m scared for the future, but
more than anything, I just feel so helpless.