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 For bed partners of RBD sufferers 
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post For bed partners of RBD sufferers
In his book Paradox Lost, Midnight in the Battleground of Sleep and Dreams, Dr. Carlos Schenck has this to say in his introduction to the chapter on REM Sleep Behavior Disorder: "What emerges with special clarity is the true love, keen altertness, and heroic endurance on the part of the devoted wives. RBD men are fortunate in marriage."

If your LO has (or had) RBD, take a gold star out of petty cash, please. :lol:

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sat Jan 22, 2011 1:46 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: For bed partners of RBD sufferers
The way I dealt with it was to turn my back to him. He didn't do any harm with a punch done while asleep, horizontal, and with no target. It never hurt; I just didn't want to get hit in the face or boobs.

He now sleeps lying flat on his back without moving or making any noise. Do any others do that?

G


Sat Jan 22, 2011 6:44 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: For bed partners of RBD sufferers
Yes, Gail. So does my husband.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Jan 22, 2011 7:49 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: For bed partners of RBD sufferers
That's the way I slept, Gail, with my back to him. I also didn't want a hit in the face. And now he does sleep mostly on his back at the beginning of the night. Later on he curls up on his side, but for the first few hours it is on his back with little movement except for the nights when his hallucinations are really doing a number on him. Now I am in a different bedroom and I actually can sleep on either side....WOW...a choice.

Smiles, Nan


Sat Jan 22, 2011 8:02 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: For bed partners of RBD sufferers
Frank sleeps on his back and never moves all night. He does talk, hum, sing or coughs all night. I sleep in another room, can still hear him but his shaking no longer wakes me.

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sat Jan 22, 2011 9:15 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: For bed partners of RBD sufferers
We sleep on a King Size bed. Dale sleeps mostly on his back due to a condom catheter. However, he is not motionless. For that reason, I always face away from him. I often pretend to be asleep when he calls for me. I can tell when he really needs me... or if he is just awake and unaware of his surroundings due to delusions or hallucinations by the urgency of his call.

He has fallen out of bed twice recently and so I put pillows on the floor next to his side of the bed. A TempurPedic mattress keeps the bed stable so his movements don't bother him and he doesn't awaken when I come to bed.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Last edited by Leone on Thu Feb 03, 2011 11:09 pm, edited 1 time in total.



Sat Jan 22, 2011 9:52 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3430
Location: Vermont
Post Re: For bed partners of RBD sufferers
Leone - you beat me to the suggestion of a Tempurpedic! Being a light sleeper used to mean almost every time my husband moved I'd wake up. With the Tempurpedic we bought last spring sleeping in the same bed is the usual, not the exception! Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sat Jan 22, 2011 10:00 pm
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Joined: Wed Jan 06, 2010 10:33 pm
Posts: 7
Location: Florida
Post Re: For bed partners of RBD sufferers
It's interesting to see how many of the LOs have gone from the dangerous, active sleep behaviors to the quiet still sleeping. That's the case with my LO. After sleeping "on pins and needles" for years after a punch in the stomach and then a black eye, we now sleep peacefully and quietly. Similar to Gerry's LO, my hubby does occasionally sing and laugh in his sleep.

Marcia 58, husband 76. Diagnosed with LBD in 2008. Sleep disorders evident since 1990.

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Marcia Corbett


Thu Feb 03, 2011 9:55 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: For bed partners of RBD sufferers
Marcia, did your husband receive treatment for RBD?

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Feb 03, 2011 10:32 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: For bed partners of RBD sufferers
Can someone tell me how a Temperpedic bed is put together and how it works to keep you from feeling the movements of dreams being acted out? It sounds too good to be true, and I am very, very interested!

John not only talks and laughs but jerks and moves his arms and legs. It is happening less frequently now with extended release melatonin helping him in addition to some weigh loss, which has helped the sleep apnea.

Years ago I traded our king size bed for two twin sets placed directly on the floor to completely stabilize the beds separately, while keeping us close together. It also put us lower so if John falls off, he is closer to the floor. I recently added white noise to block out some of the sounds of his active night life. When all else fails, we sleep in different rooms that night.

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Sat Feb 05, 2011 1:35 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: For bed partners of RBD sufferers
Pat.... Dale is now in a hospital bed and he misses our Tempur-pedic bed so I've ordered a mattress for his hospital bed.

The Tempur-pedic is made NASA invented 'memory form.' Since it has no springs, it has no tendency to move. It was great during the last two years of Dale's illness when Dale and I shared a bed because he could be sleeping and I could join him without moving his side of the bed at all. I can't say that I never knew that he moved, however. I was always aware of his 'acted out dreams.' I feared he would get out of bed and hurt himself.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sat Feb 05, 2011 5:58 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3430
Location: Vermont
Post Re: For bed partners of RBD sufferers
For us, the key to me getting better sleep is not only the Tempurpedic mattress, but NO BOX SPRINGS either. Having a platform instead of box springs, and a mattress that is just memory foam, I don't have to keep getting up and moving to another room when my husband's twitching legs wake me up.
I don't care how good other typical mattresses with springs inside say they are, just going to a bed store and trying all of the different types showed us that the Tempurpedic was the only one where I felt almost no movement.
The only time I feel movement is if his legs are really jerking convulsively and I feel the blankets move on my legs (I'm a really light sleeper).
Tempurpedics are not cheap and they don't seem to ever go on sale, but my not getting a good night's sleep was not good and well worth the price of the mattress and platform. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sat Feb 05, 2011 12:24 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: For bed partners of RBD sufferers
I just hope there's no urinary incontinence on the horizon. Group members who have the Tempur-pedic mattresses that circulate in our group pay big $ to an upholstery cleaner to get the urine out of the mattress.


Sat Feb 05, 2011 1:53 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: For bed partners of RBD sufferers
You've got that right, Robin. My daughter and her husband paid $3K for one and their puppy peed on it, ruining it.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Feb 05, 2011 4:59 pm
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Joined: Tue Jun 22, 2010 4:17 pm
Posts: 18
Location: Connecticut
Post Re: For bed partners of RBD sufferers
Hi Jeanne and all,

Sorry..haven't been on the board for a bit. My husband has had success with his namenda and zoloft, until he began to get up many times a night. It came to the point where he might sleep for about five minutes or ten, and then be up again, just roaming, touching things, picking imaginary bugs up from the carpet, and falling occasionally. I was also suffering from sleep deprivation, feeling terrible. When I contacted the Adler Institution, a part of Yale New Haven Hospital, the doctor prescribed gabapentin. This combination, for him, was a miracle. Those are the only medications that he takes, besides the Exelon Patch, for his condtion....nothing specifically for Parkinson's, since every medication he took for Parkinson's had a negative affect. He sleeps through the night most of the time. Now he has become incontinent, so the hospital bed, and his sleeping alone has become necessary. I have a double bed in our bedroom, so I am close by if he needs me. The floor alarm mat which is right next to him goes off at the slightest touch, so I am awakened to his need. He is now confined to a wheelchair, and in severe dementia so the realization of his condition is not there very often, but when he asks what is happening to him I tell him that his Parkinson's has become somewhat worse, as has his memory. I comfort him and tell him that he can be comfortable; all is well, and that he is doing fine. He seems content with that.It is a heartbreaking thing for all of us.....We all do what we can, and do things we never thought we could, or would be called on to do...I hope I haven't run on too much...I sort of forgot the question, but trust I answered SOMETHING :) BTW: he does act out dreams actively, still.

Marcia


Sat Feb 05, 2011 6:02 pm
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