My husband has REM sleep behavior disorder (RBD)

My husband says his doctor says he doesn't hae parkinson's. He got dignosed 30 years ago with REM sleep disorder after he kicked and punched me several times in the bed. Also he would get put of bed and act out and fallout of bed also. Now he shuffles along and he will fall backward too. His cognitive abilities are going down. Healmost fed his precious dog he loves so m uch onions with broth over his food the other night but I caught it. And my hubby knows you can't feed dogs onions. He is not thinking his best. He has been in the bed no kidding for 5 years. He is so sleepy all the time he says. He jusy can't wake up. And he has given up on doing most anything. He will not tell the doctor though. I keep saying I am going with himm but he takes off without me. What do u do about that I wonder?

My husband has been exhibiting Rem sleep disorder for about 5 years. Recently, after slugging me in the middle of the night, he agreed to have a sleep study. He first was seen by Dr. Robert Hooper at Mayo Clinic. Dr. Hooper published a book that we are currently reading called Sleep and It's Disorders What you should know. It goes into these violent outbursts with some people and how to treat it. He will go over his results at Mayo in 2 weeks with a sleep specialists and a respiratory therapist. I was just diagnosed with Central and Obstructive Apnea. He has seen the improvement in my sleep and I do believe that this motivated him to finally get help. For the past 2 days, he has been putting tape on his mouth when he goes to sleep. For the first time in several years, he was not snoring throughout the night and had less movements. Dr. Hooper did mention that he might benefit from using Melatonin. Will follow up with everyone when they go over his results.

Hello. May I ask if your husband is on any medication?

Hi everyone, I'm so thankful I found this support group. I haven't been diagnosed with RBD yet. But from what I have read from all of your comments I definitely think I have it. I don't know when I started having these night terrors. I have always been a very light sleeper and I have had nightmares since I was a little girl. I always tried to sleep in my parents room because I was so scared to go to sleep because of my nightmares. Of course that didn't go over well with my parents and my dad ran me out of the room every time. So then I tried going into my older sisters room to sleep in there but she was not having it! Sometimes I have bouts of insomnia where I will go days without sleep. I also have A.D.D. so I have thousands of thoughts running through my head every second of the day. I started some time ago, maybe 8 or 10 years ago having night terrors every once in awhile where I would scream out in my sleep, thrash around my arms and legs and sometimes even cry. I was also diagnosed with restless legs syndrome at age 40. I'm 52 years old now. Here in the last 5 years I think, it's gotten a lot worse and happens more frequently. Like pretty much every night. My fiance says I do stop breathing at night. So more than likely I have sleep apnea. Both of my parents, my sister and my aunt has sleep apnea and are all on CPAP'S. I didn't think much about my night terrors because I never remember having them. My fiance started waking me up every time I had them and he said sometimes I would be hard to wake up. I just remember getting angry with him for waking me up lol. Sometimes I would go right back into the dream I was having and he would wake me up again. Those were the bad nights. Then 2 years ago we got evicted from our house and we all had to go to different places. I am now staying with my aunt and my mom, and I have been for the last 2 years. They have witnessed my night terrors and me acting out and have been very concerned about it. So that has sent me into research mode and that's how I found this group. I have also heard this disorder might be associated with Parkinson's disease but I was hoping that wasn't true. I am sleepy during the day because I guess I am not getting enough sleep. So I do nap a lot. I was on 3rd shift for the last 15 years until the first of December 2023. Then I was forced to go to 1st shift which I hate. So now I don't know if I am still doing it or not because I'm not asleep when they are awake anymore. So thankful I found y'all and hopefully we all can get the help we need.

The REM sleep behaviors started with my husband about 25 years ago, he is 68 now. He would thrash around in bed, run into walls, hit me (broke my nose once), scream military orders, dive off the bed, crawl over me to get out of bed, etc. Then the slow hard to detect memory loss, and the trembling hands, and each year new symptoms appeared until we went to Mayo Clinic in 2018, and he was diagnosed with Lewy Body Dementia and later, Parkinsonism. This has been a long journey, a hard one, and a heart breaking season for everyone that loves him so deeply. I realize there are many different things that REMBSD ( Rapid eye movement behavioral sleep disorder) can be related to, but some of the symptoms described sound exactly like my sweet hubby's journey. He was an instructor pilot and would forget the answers to questions on tests that he had created. He began to forget the emergency procedures and even the preflight procedures - things he had done for over 40 years. He called our grandchildren by other names, and he began to experience anxiety, depression, etc. I don't want to upset anyone, but REM sleep disorders are a major predictor of LBD. When discovered early, the few treatments available work much better. God Bless all of you...
Jan

I have posted in the cognitive impairment group, (can’t remember correct name )but this group is where I’m at also.
So was memory loss part of your RBD experience also. My neurologist said he thinks I have RBD but put MCI as a diagnosis, he advised me to go back to the Pulmonary Dr. who I had a sleep study done with. This Dr. said on my report that I have
Severe periodic limb movement. I didn’t go into REM sleep during the study. No one said anything about follow up treatment. I know I have memory problems. It’s all confusing. I have an appointment with Pulmonologist May 7th. I find these these conversations interesting as I have never known anyone with RBD.
If this is too long feel free to cut it 😊

There was no cognitive impairment, UNTIL, he was diagnosed with Parkinson's, 20 years after the RBD diagnosis. Now, there is some cognitive impairment, and with the progression of PD, there will probably be more. 20 years ago, before the RBD diagnosis, he visited a pulmonologist, and was diagnosed with sleep apnea. He didn't tolerate the c-pap very well, so, visited a sleep specialist. The sleep specialist told him he did NOT have sleep apnea, but did have RBD. A sleep study was done, by both the pulmonologist and the sleep specialist.