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Adhocke

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Jan 6, 2012
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CALS
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MA
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Brookline
Hi. I'm new to the forum and hope that someone will have some advice. My PALS is having a lot of difficulty getting comfortable in bed. We have tried two different hospital beds but neither have worked out so well. He has virtually no ability to move on his own except some movement in his fingers. He complains of restless legs, sore tail bone, etc. Is there a bed out there that someone is thrilled with and recommends?

For the PALS out there with similar discomfort at night - is it most likely the mattress? Would an air mattress on the current bed help? Or a lambskin mattress cover?

Any advice will be GREATLY appreciated! Also thanks for all of the information here - I have only been reading posts for the past 2 months but me and my PALS have gotten some valuable info here. Thank you and God Bless!
 
We had a low air-flow inflatable mattress with a gel mattress base. This was on a fully adjustable bedframe. The bed changed Terry's positioning every two minutes, so he never had that immobile feeling. I believe it was a Sapphire system mattress on an Invacare bedframe.
 
Hey, sorry about your husband. My husband slept on a Tempurpedic adjustable bed. He was very comfortable in that until the last 6 months of his fight. We then tried an alternating air mattress overlay, but he didn't like that. So I bought a lambskin rug that covered the whole bed (because it was cheaper than the lambskin mattress cover) and he loved that. He also had a twin mattress memory foam that was placed on his recliner to make him more comfortable.

Good luck to y'all!
 
In addition to what's been said above, try a wedge pillow under his knees for part of the night. That'll also take pressure off different parts of his body.
 
We have an alternating air flow mattress. my pals is completely immobilized and he really likes this mattress. it not only prevents pressure sores, but it treats them as well.
I know a few have mentioned memory foam- this can be a good thing... but Id be careful with it. especially if your pals cannot move at all. Memory foam is very warm and it absorbs sweat. Heat+moisture+immobility=pressure soars. Especially since he is already complaining about his tailbone- id be careful. My pals had a stage 4 sore on his tailbone. He WAS sleeping on memory foam. It tooks many months to heal. We are lucky it healed up. Easily couldve killed him.
 
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That is true, Liz! We solved that problem on the recliner with my son's old Spiderman comforter. We put that on top and then added a sheet that could be whipped off and washed, as needed. I think the memory foam toppers are less dense than the Tempurpedic mattresses and causes more "sinking in" and heat.
 
I solved the bed problem, I now sleep in my lift chair. We took the cushion out of my wheelchair and I sleep and sat in mine and I have done this for about two years I have never had a bed sore(better knock on wood) the nurses are amazed. I have tried the mattresses above except for the air flow one that changes your position I think I will check into it.
 
Thank you all for your quick responses - some very good advice! We're learning everyday with this awful disease. Hopefully one day I will be of some help to an ALS caregiver. Good luck on your journeys and much thanks again.
 
I got some sort of air mattress reduced compression thing while I was at the hospital.It looks really funny but it actually made it tolerable to sleep on the hospital bed. Honestly it looks like a honeycomb..mattress. I guess the holes inbetween the sections makes it so the person doesn't get pressure sores? You blow it up with a pump...I can't remember the name though. If I can find it later on I will write again the name. maybe you could search for mattress with holes in it to find it before then. sorry my brain is not too good today.
 
Thanks for asking the question Adhocke, I haven't really thought about what I will sleep on when I can no longer use my regular mattress (which I love). So all this input was very helpful to me as well...Thanks Guys and Girls....D
 
I have used the ROHO dry floatation overlay and it works well for me so far, but have to say haven't gone through a summer yet being immobile in bed, since that started in the fall for me. But I go12 hours on this most nights. Based on the pictures, this also the overlay that Joel used. Note this is different than the Prodigy overlay from ROHO. Expensive new, but I found one on E ba y and one on Crai gs list used for about 300-400. Still pretty expensive used. But worth it to my wife so she doesn't have to mess with me most nights.
 
This old thread has a lot of valuable bed information in it. It includes a link to Joel's "Our Bed" portion of his webpage.

https://www.alsforums.com/forum/tip...how-i-learned-sleep-without-turning-over.html

Annie later added a sheep fleece. After a while, we replaced the alternating overlay with a ROHO mattress overlay. It has three sections each of which comprise a number of cells about 5" square. One section in under the upper body, the middle one under the hips, and the third one under the legs. Each section is pumped up separately.

Annie found it comfortable once the pressures were adjusted. Positioning on this inflatable pad was really important. You don't want bony areas to be placed on the gaps between the air cells.

Annie's alternating overlay was a constant pressure type. She found that as she lost weight it was too hard. That's why she changed to the ROHO. She later learned about variable pressure alternating overlays, and thought that would have been better.

Eventually, due to her decreasing circulation and loss of flesh, sores started to develop on her tailbone and shoulder blades. So I put the alternating overlay back on, but this time on top of the ROHO. This provided a softer surface, but still allowed the pressure points to change periodically.

Getting her positioned well was very important for her comfort. But if done well, she could remain comfortable for a long time. Her use of pillows also evolved as she deteriorated. So I was constantly trying to assess her present mechanics, and make adjustments to accommodate her changes.
 
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