My husband has REM sleep behavior disorder (RBD)

My husband's symptoms started at age 50. He is now 71. Klonopin and Melatonin (lots of it) keeps him from getting out of bed at night, although he still thrashes around, and talks in his sleep.
Our own research , and his neurologist, told us RBD patients frequently develop Parkinson's Disease. He was diagnosed one year ago with PD. Looking back, we think there were other signs of PD, starting several years before he was diagnosed. He is doing quite well with his medications.

Hello @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?

Hello @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?

Bill'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.

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?

My 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.

Bill'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.