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My husband has REM sleep behavior disorder (RBD)
Little is know about this disease, but it has a major effect on a family. My husband was diagnosed 10 years ago. Is anyone else dealing with this?
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Glad to hear he is doing quite well now.
Would you provide some of the early signs of PD that you later realized were indicators of PD? Could be v. helpful for others of us concerned about increasingly vivid dreams.
Thank you & be well.
My husband is having some sleep issues and refuses to go to the doctor for a proper diagnosis. His issues started about 5 years ago when he started having unusual movements in his sleep. In the beginning, it was rhythmic clenching and unclenching of his hands on and off throughout the night. This progressed to jerking movements of his entire body and even falling out of bed a few times. Over the past couple of years, he has had nightmares usually having to do with fighting off intruders, dogs, or wild animals. While body movements happen nightly, the bad dreams perhaps happen 3-5 times per month. A few times, he hit me in his sleep believing that I was the intruder. I have researched these symptoms on the internet and they seem to be common symptoms in people with Parkinson's. He rarely snores and he has long periods of quiet throughout the night so I suspect when body movements and nightmares that he acts out occur, he is in a REM sleep stage. I had stopped sleeping with him out of fear of being injured and only returned to our bed when he agreed to try Melatonin. I had shared with him that I had researched his behaviors and they seemed to point to RBD and that some people with RBD had found Melatonin helpful. I actually viewed a webinar on Michael J Fox's Parkinson's website and the doctor in the webinar spoke about Melatonin and how it is considered a safe supplement to use. Melatonin has toned down his episodes but has not eliminated them. I don't know what to do as he refuses to seek help, Honestly, he doesn't think anything is wrong and thinks it's comical as he typically is unaware of his own behavior. I also do not feel comfortable telling him what I think he has--RBD and perhaps even Parkinson's and/or dementia related--Lewy Body. Has anyone else experienced body movements and nightmares where they act out their dreams? Have you been diagnosed? What medications have been effective for you?
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1 ReactionHello @kalliope56, Welcome to Connect. I know it must be really difficult for you trying to help your husband when he doesn't think he needs any help. I thought I would tag you in this existing discussion on the same topic so that you can meet @pamela51, @brandysparks, @billchitwood and others talking about REM sleep disorder and what may help. If you click the link below it will take you to the first page of the discussion where you can learn what other members have shared:
-- My husband has REM sleep behavior disorder (RBD)
https://connect.mayoclinic.org/discussion/rem-behavior-disorder-rbd/
Do you or your husband have other family members or children that may be able to help you convince him to seek treatment?
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3 ReactionsBill's recent second trip to the hospital had them continuing HH. Which he then refused. His excuse is he is 89 and nothing is going to help him. Therapist tried to get him to understand that doing the light balance exercises could actually help keep him from falling and out of the ER. He is not willing to help himself (ongoing for so many decades).
He fell again the other night but this time he did follow my suggestions, inched his way into an area where I could use the Riser. Put that puppy together, cranked it up (he is 163 now and I'm 103) and within a few minutes of cranking I had him in an upright chair position and easy to transit to his walker and then to bed.
But he still won't do the few balance exercises and resists walking.
Bill is on Seroquel for both anger issues and REM sleep disorder. Has helped on both. For a while it wasn't safe for me in the same bed with him. When I slept elsewhere it got his attention.
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4 ReactionsIt’s just the two of us.
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2 ReactionsI goofed up the name of what I used to get Bill off the floor. It is a Raizer M. Made sure he hadn't suffered any injuries before trying to move him. He had landed on his arse this time. I think do to his school years of playing football he had learned to take a fall. Which has made his falling less dangerous then they could be. Now if his luck will hold! Better, if he would do his balance exercises so he didn't fall!
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3 ReactionsMy husband was diagnosed 21 years ago, after a sleep study confirmed RBD. A sleep specialist will prescribe a drug (my husband takes clonazepam) PLUS 15 mg. of melatonin. Sounds like alot, but the melatonin is titrated to the amount of the prescribed drug. It seems to be the right combination for him. After many episodes, similar to the ones you have mentioned, we have been in separate bedrooms for years, and I certainly sleep better that way! After 20 years of having RBD, he was finally diagnosed with Parkinson's. At this time, he is doing well.
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3 ReactionsSomeone asked earlier, about the earliest signs of PD. We think, that, perhaps there were two years of subtle symptoms, before the actual diagnosis. As the person listening from the congregation, (my husband is a pastor), I noticed how weak is voice was becoming. Occasionally, he lost his place, or , there were long pauses. Once, I took him to the ER, thinking he might be having a stroke, because of an episode where he was conscious, but not responsive. Nothing was found, and it was considered a possible TIA. Other symptoms became apparent later, such as, his gait began to change....leaning forward, starting to drag one foot. His sleep specialist/neurologist, who had been seeing him for many years for RBD, finally made the diagnosis of PD.
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3 ReactionsI’ve been giving my husband 5 mg Melatonin per night. Last night, was super quiet...no body movements or nightmares. Previous night, he made a weird sound and I woke him...he said a hand grenade exploded. He’s in mid 70s and the RBD started about 5 years ago. I am reading about RBD and PD to learn as much as I can to be prepared.
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1 ReactionSleeping in the guest bedroom for a month got my husband’s attention and his agreeing to try Melatonin.
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