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My husband has REM sleep behavior disorder (RBD)

Sleep Health | Last Active: 1 day ago | Replies (67)

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@sharonrbd

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.

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Replies to "Hello to all. I am alarmed reading all these posts that do not definitively connect RBD..."

@sharonrbd you are correct. I have dementia. The diagnosis right now is mild Alzheimer’s and/or Lewy-Body Dementia.
I am having several symptoms of LB. However, my diagnosis will be a toss up forever.