How to sleep with ALS

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pumpdoc

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Just curious as to where and how you sleep. Me? I sleep in my La-Z-Boy and have for over 2 years, I can't roll over or for that matter maneuver my body so I just live in my recliner and powerchair. I long for the day of crisp clean cool sheets, but you have to adapt. Not complaining, just wondering:cool:
 

chriss

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Sleeping when you have ALS

Hi, my husband cant be rolled to the side and cant move his body. We have a hospital bed which has electric controls so the top part of the bed can be raised etc. The mattress has foam around the edges and roho in the middle. Even so my husband finds it hard so we have put an overlay on top and some egg shell foam. Again even though the head of the bed is raised we use a triangle hard foam pillow at the top. Over this is a layer of egg shell foam. To get in and out of the bed we need to use a hoist and so when in bed we leave the sling on underneath him. That way the straps just have to be put under the legs and he gets hooked up to the hoist. Do not have any option but to leave the sling on under him. Unfortunately do not spend much time in the electric chair, maybe once or twice a month

Thanks

Chris
 
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abbas child

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Sleeping when you have ALS

I have to say "At this time", since it's always changing just when I think I have found the answer... I sleep on my back only in a hospital bed, the ROHO overlay covered with sheepfleece (see the top sticky in "Tips, Tricks and Gadgets" for a source). My pillow is standard, but I use an European square pillow under my knees, which is big enough so it supports legs until my heels drop off of it.

My husband lifts my shoulders until I can hug the knee pillow and stretch. Then he lifts under my knees to turn me to the edge of the bed, where he puts the sling on me. My buddy has a different method. I'm concerned her back will suffer, however... She pulls me up with her arm while pulling my legs over the side.
 
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Miss

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Sleeping with ALS

My husband sleeps in a hospital bed with a regular foam mattress (as Ann says, right now). We use roughly the same method Ann does to get him out of bed. He spends most of his day in the lift/recliner chair. He gets out in the power wheelchair a few times a week. Right now, he can be pulled up to stand and walk about 25 - 30 ft. with a someone holding on to the gait belt. I think we are minutes away from the hoist.
 
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Jellycat

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Sleeping when you have ALS

My mum sleeps on her back in a hospital bed with the back raised to a 45 degree angle or thereabouts. We have a pressure relieving matress on the bed which has really helped with comfort, pressure relief and sleep since we got it in June. I use a hoist/lift to get her in and out, position her in wheelchair etc. She cannot move once in bed so I use sliding sheets to change her position. We do a fine line in crisp clean sheets pumpdoc. As we don't have a downstairs bathroom, washing is by bedbath so it's a rare day that there isn't a towel or sheet wash on the go.
 
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Gail

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I sleep in a hospital bed with a saphire alternating compensating pressure mattress (I can never get the name right ). I am immobile so i never turn but i don't get bedsores. I have a vent and the sound of me breathing is soothingly wavelike.
 

Pepper

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My husband slept in a hospital bed also. I got tired of the egg crate mattress hospice supplied, he sank into the middle of it and has a hard time pulling himself up. I bought a two inches memory foam mattress and he loves it. It is nice and soft. He no longer tries to sleep in regular bed. With the hospital bed, when he chokes on phelgm - it happens often at night when he slept with head lowered, the bed can be moved till he is almost sitting and that "attack" slowly eases. He is still able to move and walk slowly. I am very grateful for that and thank God every day he is able to walk. My worst nightmare is when he becomes immobile and prepared myself for it googling hoyer lift. I learned about hoyer lift here as I do a lot of things which I got from the nurse to help my husband. In this area, knowledge is most helpful, knowledge gained from reading posts here.
 

LizT

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my PALS, like many of the others, sleeps in a hospital bed with the head and feet elevated. if we dont elevate the feet, he will slowly slide down the bed. He uses sheepskin on top of his sheets and has foam on top of the matress. he uses a home made body pillow under his head and uses a standard pillow folded in half between his feet. he is completely imobile. we use a hoyer to get him out of bed and goes into his powerchair everyday.
 

abbas child

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I just wanted to note that the ALSA loan closets often have both hospital beds and hoyer lifts for those who don't own them. Ask your Coordinator to check for you.

Also, if there's any arm strength, the foot end can be raised all the way to help drag feet up into an angle for a change of posture. I cannot turn over, but like to change my leg position in the evening. Once lights are out, I don't change position all night.
 

pumpdoc

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Like others I would need a lift with a bed, well as long as I can stand up out of my recliner, use my walker to move to my powerchair(2 steps) I like the freedom of that for as long as possible.
 

Jellycat

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Pumpdoc, I like your style & independence. Hope your recliner to chair system suits you for a long time. Though we are not in your neck of the woods Ann, we have benefitted hugely from loaned items; bed, speech device, powerchair, the list goes on. I am just so grateful for them all. One of the items on loan is a slightly textured, firm, non slip, shaped kind of pillow which when put under the legs beneath the bottom will help stop a person sliding down the bed when the back is raised. Don't know if something like that could be a change for your pals Liz.
 

LizT

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Thanks Jellycat. I will mention this to him!
 

Mick n Ang

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We have dual electric beds with memory foam matresses so are still happily in the same bed, Mick sleeps at a 45 degree angle If he has phlegm he raises further and also has his feet raised. We have placed a slim wedge shaped pillow under his calves to his heel as he was getting pressure on his heels which this has now stopped. On top of that is a half sheep skin from heels to thigh as a full one was making him too warm, this is all under his nice crisp egyptian cotten sheet. He wears sheep skin booties all the way from america and this is the only time his legs and feet are lovely and warm. And only this week have ordered a neck pillow again from america (as in England we can't get anything like this unbelievable I know) to try and ease his neck so hopefully once that arrives he will be as snug as a bug in a rug. We don't use a hoist yet as I can still help him swing his legs out over the bed and he is able to transfer straight into his scooter/chair. It works for us at the moment hope it gives you some ideas. Who knows what tomorrow may bring Ang xx
 
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