Sleep Comfort?

BlsdMama

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Dec 5, 2016
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PALS
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05/2017
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IA
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Cedar Rapids
I’m having no respiratory issues and no anxiety issues. I drop off to sleep easily. However, my spasticity is incredible. About half way through the night - 2 or 3 am, I start to need to adjust my position. Stretching is very painful, I get clones, cramping is minimal. It’s difficult to turn to my right and to my left is impossible without help.

My husband has enough on his plate without me interrupting his sleep. Sigh. Solutions?

I have a hospital bed I despise. I do like my heated mattress cover - it helps with lower back spasticity. I know many suggest an air mattress but I can’t give up the heated mattress pad. The hubby is a “hot” sleeper and I can’t do additional layers on top it I can’t move. I realize eventually I’ll need turning with a CNA or something but I don’t think I’m there yet. I do have a Golden Technologies chair… I don’t love it but have thought of giving it a try. My wheelchair is incredibly comfortable but I can’t imagine being in it 24/7? There’s a certain percentage of, “Suck it up, Buttercup,” that needs to come into play, but I don’t want to overlook potential solutions.
 

lgelb

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What do you despise about your bed? Do you go to sleep with head and legs elevated ~10-20°? After doing that, do you tilt forward or back at all?

Most PALS do not use an low air loss mattress (though in fairness hypothetically you could put a low voltage heated mattress pad under one, in a separate mattress cover), nor do many end up needing outside help at night. So I would make the goal getting as comfy as you can all night, and going from there.

What area(s) do you get spasticity in at night?
 

swalker

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I think a lot of it comes down to the bed and mattress you are using.

Like you, I hate my hospital bed, but for totally different reasons. I hate it because it is a hospital bed and all that it represents.

I also LOVE my hospital bed. It allows me to position myself very comfortably. The air mattress automatically adjusts the pressure to prevent the sores I was having trouble with a couple of years ago.

One of the things I like best about the hospital bed is they way it supports every inch of me without any pressure points. While my wheelchairs are very well adjusted to my body and are quite comfortable, my hospital bed is even more comfortable.

Steve
 

Silver Oak

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I have a "Sleep Number" bed that is quite comfortable, although as my ALS progresses I'm having difficulty turning from one side to the other. Would be interested in solutions others have found.
 

JimInVA

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When my PALS was in the hospital bed and could no longer turn in bed, she'd wake me every 30 - 90 minutes during the night to turn her. Needless to say, it made for some very long nights without good sleep and progressively worse days. Our local ALS Org gave us an alternating low loss air mattress on loan. Suddenly life changed! She no longer woke during the night as she no longer felt the need to turn. We both began to sleep, again... A GOOD SLEEP! Neither of us would have gone back to those days before the new mattress.

Darcey was ALWAYS cold. So, she had a heated mattress pad BELOW her (it was never a problem for the air mattress) and an electric blanket ABOVE her.

I hope that you are able to find that which works best for you. Good sleep is so, so important!

My best...

Jim
 

wmilo

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I thought that turning in bed was going to be a problem for me. I looked into turning systems using alternating mattress chambers/pressure, and mechanical beds that rotate the sleep surface at intervals. When I started using the Trilogy at night, I had to change from sleeping on my side to sleeping on my back because I couldn't deal with the hose and mask frame while lying on my side.

I use a foam mattress with two latex pads on it; one is 3" of medium firmness and the other is 2" of soft firmness. I do have to elevate the head of the bed, which decreases breathing effort, and also I raise the part under my knees a bit. I generally sleep 9 1/2 hours, so I'm in bed around 10 1/2 hours. No bed sores and my back and knees are happier. And no turning.
 

Jimi

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Torrance
I have a golden technologies zero gravity lift chair with the brisa fabric and power head rest. I have a trach and am paralyzed from the shoulders down. Luckily my head still moves ok, which allows me to control my phone and PC with head tracking.(eventually eye gaze will be needed - but head tracking is less sensitive to position) I've modified the chair remote to be controlled via the PC or phone. I can adjust my own position. This really helps with comfort and I don't need to bother my wife at night. I spend about 22 hours a day in the chair most of the time. No pain no sores ever. The lift chair makes peeing easy. Putting on the sling for transfers is easy in the lift position to. The power headrest is also key for comfort. There's no need to mess around with additional pillows. I find the brisa fabric to breathe well, clean easy and is very durable. Haven't slept in a bed since 2017.
 

Silver Oak

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Thank you for the feedback
 
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