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My husband has REM sleep behavior disorder (RBD)

Sleep Health | Last Active: 5 days ago | Replies (73)

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@nmrcdigman

REM in a partner can definitely be terrifying. When my husband was first diagnosed about 10 years ago, one of the things mentioned was this can be an early indicator of possible Lewy Body Dementia years later. Many people do not end up with LBD. We are some of the unfortunate ones, he did finally show signs of LBD and was diagnosed about 18 months ago.
This is ironic - as LBD progresses, the REM regresses! He also takes Clonazepam and Melatonin (pharmacy grade from a compound pharmacy the sleep doctor recommended). If I were to go back 10 years, I would get a second Neurological opinion and encourage a brain MRI for a base line.

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Replies to "REM in a partner can definitely be terrifying. When my husband was first diagnosed about 10..."

Hello Cheryl @nmrcdigman, I see that you recently joined and wanted to welcome you to Connect. Since you mentioned you are the caregiver for your husband who has Lewy Body Dementia along with the REM disorder I thought you might find some of the other discussions on LBD helpful. Here is a list of the discussions and comments from other members for LBD - https://connect.mayoclinic.org/search/?search=lewy%20body%20dementia.

There are also many discussions in the Caregivers and Caregivers: Dementia Groups that you might find helpful. Here are the list of discussions for both groups:
-- Caregivers: https://connect.mayoclinic.org/group/caregivers/
-- Caregivers: Dementia: https://connect.mayoclinic.org/group/caregivers-dementia/