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 Rem sleep disorder? 
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Joined: Tue Feb 17, 2009 1:38 am
Posts: 10
Location: Wisconsin
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Post Rem sleep disorder?
I noticed for the first time my husband acting out his dream with moving his legs wildly and kicking out every which way and waving his arms all over. I have wondered if he has had this before because he always was a neat sleeper you could just pull up the covers and his bed would be made but most nights but not all his bed is shambles and i have to start from scratch making it. We have had seperate beds for almost three years because of my medical problems i have a hospital bed. Is it normal to do this some nights and not others?
Also he admitted he no longer can track with our minister during his sermons and told me he hasn't for awhile, which he covered up very well. He also started isolating himself when it was just the two of us home alone. he would get on the computer and play solitaire for 4 hours at a time or look at his car magazines for ours and not hear me try and talk to him unles i said his name many times then he will acknowledge me. When he is with others playing dominoes or playing cards he covers up his not carrying on a regular conversation with acting silly and using humor.
This is getting long but he also is retaining fluid in his legs and his dr has been increasing the lasix dose and decreasing his heart meds, she said she is going for quality not quantity and this went over my husbands head but it put me into a little depression with all these changes and then the dr saying this. I wasn't prepared. How do you prepare for the downhill slides?

Cathy age 52 Hubby Larry LBD dx'd 2005

Tue May 12, 2009 11:53 am

Joined: Sat Jan 31, 2009 7:21 pm
Posts: 172
Location: Ohio
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Cathy: my heart goes out to you. Perhaps you need to talk further with the dr. about what was said about the quality/quantity issue. Also the behaviour you describe is almost exactly like my LO. He really perks up when family stop in occasionally, to spend some time. And he visits once a month with my 87 year old uncle who thinks "he's just fine!" Some days the withdrawal really gets to me so I know how you feel. Dee

Tue May 12, 2009 1:13 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Cathy F,

RBD (REM sleep behavior disorder) is very common in LBD, PD, and one other disorder. It doesn't indicate a further decline because *many* people experience RBD 10+ years before any other LBD or PD symptoms. It is common to act out dreams on some nights but not others.

It's best to have this evaluated through a sleep study. Your husband can receive medication for this symptom.

About the MD saying she's going for quality, not sure this is what your husband wants as this is his decision.

With every new symptom and declining cognition, it's a reminder of what you are losing (and have already lost). I'm sorry you are experiencing this anticipatory grief. It's a very challenging situation. I'm not sure one can ever be prepared. But I found it very helpful to join a local support group as well as online groups.

Good luck,

Tue May 12, 2009 2:12 pm

Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Cathy F. --
Hang in there, it's all part of the Lewy journey. We had the RBD experience for years before Jerome showed noticeable signs of "dementia." I say "we" because we shared (and still share) our bed and I usually played the role of the "bad guy" in whatever wild dream he was having. Not safe. It's also hard to wake them from these dreams, and I learned to hop out of bed first and move to the foot of it before trying to wake him.

Is it possible that your husband is experiencing Capgras syndrome during these spells when he isolates himself or ignores you? Does he think, perhaps, that you are an imposter pretending to be you? That could explain it.

Did your husband ever express an opinion re: quantity/quality? If not, why would you advocate for quantity? Conversely, why might you advocate for quality? We've all grappled with this moral and spiritual dilemma, and dare I say, most of us vacillate between the two depending on how things are going at the time.

Stay connected!

Renata (and Jerome-in-Heaven)

Tue May 12, 2009 4:08 pm
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