My husband has REM sleep behavior disorder (RBD)

My husband has been showing significant signs of REM behavioral sleep disorder. It started about 8 months ago with me waking up to him hitting me. My husband would never hurt me. We’ve been married 49 years. It happened again about a week later. He fights in his sleep nearly every night. I have to wake him up many times. I don’t sleep. I’m so tired all day long. Any ideas will be greatly appreciated.

I believe that my husband's neurologist thinks that his RBD is controlled. It probably is as good as it will ever be. We have slept in separate rooms for many years. We tried twin beds, in the same room, but his dreams were too disruptive for me to sleep comfortably. When this first started, we slept in the same bed, and, it was terrifying. I was always "on alert". Aside from our sleeping arrangements, he is now beginning to have some slight symptoms, such as occasional hand tremors, and going "blank" when he is speaking. (He is a pastor. This is not good.) According to the readings, in the links, I have seen, this is not necessarily uncommon, in RBD patients. Our frustration is , his neurologist is not addressing this as a possible connection to the RBD. Instead, other tests are being done, and RBD, or, early PD doesn't seem to be even considered as a possible cause. The symptoms, at this point, are few and far between. More tests are coming. That is where we are right now. It is nice to have a place to share. I will suggest to my husband that he join this conversation. Thank you.

The first place to start is with a sleep study. Melatonin has been working well for my father as an aide to his sleep. After you determine when the movements are occurring, REM or NonREM, you can get the best treatment. Movement during your REM stage can be a very serious issue.

Please tell me more why movement during REM stage is a serious issue ?
I had SD and used to jump out of bed sometimes falling
I take 5 mg Melatonin and it has stopped However I do talk aloud in my sleep and my husband says I have a tremor
This is usually in the morning after 5 or more hours sleep

I started having them about 3 years ago and began reading about them. I read that about 80% of people who experience RBD will develop a neurodegenerative disease such as Parkinson’s within 10 years. Now, 3 years later, I have been diagnosed with Parkinson’s. None of my doctors show concern or offer any suggestions for the sleep disorder. It is frustrating and frightening for the patient and spouse. So far, I’ve only injured myself with my flailing, kicking and falling out of bed.

Hello to all. I am alarmed reading all these posts that do not definitively connect RBD with likely progression to Parkinson's or Lewy Body Dementia. It is established science that RBD is "prodromal" (early undiagnosed symptom) for these diseases. Please visit the Michael J. Fox Foundation website for more info, or just Google for research. There can be many years between RBD symptoms and further development. If you have RBD, you can be part of important research that is trying to figure out how to stop it from developing further. RBD is formally diagnosed with a sleep study, and there is a new skin biopsy test (SYN SKIN) that can show if you have the folded alpha-synuclein protein that is present with PD or LBD. No doctor can or should just say you don't or won't get them, on the basis of the fact that you don't have any symptoms yet. Other non-motor early signs are extremely low blood pressure on standing, constipation, and loss of sense of smell. Exercise is the only thing that has been proven to slow the progression, which again can take from 5 to 20 years. I have RBD and I control it by sleeping in a stretchy constrictive bag. It actually controls the dreams, they are not violent, though I often run with my feet in the bag, and move around and talk. But I'm able to stay in the bed with my partner without harming him or myself. I got the bag on Etsy by looking up "adult swaddle." Taking the drugs (melatonin/Klonopin) didn't agree with me but in the bag I sleep well. Good luck to everybody.