Old 07-19-2010, 09:38 AM #1 (permalink)
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Default How I learned to sleep without turning over

I have been asked about this. As I decided early on that Phil, who isn't a good sleeper, needs to continue getting up and going to work, I would have to find a way to sleep without assistance for as long as possible.

It required first a hospital bed, allowing me to adjust the head and the foot until I found my own "best angles". I also found that for some unknown reason, I needed to pull myself, using the rails, up toward the headboard a small amount. Actually, one reason is that I need to be really straight in bed, without my hips being out of alignment with my shoulders or my knees. I have a foam filled pillow under my head which keeps my head in a very comfortable angle. And I am lying only on my back. I could not stay on one side all night without either back or hip pain or both.

Just as my bed came from the ALSA loan closet, so did a rack for over my feet, as well as an alternating air overlay. I have a standard bed pillow stuffed into that blanket rack, and my feet are placed so that my foot drop doesn't happen. My feet are against the pillow.

I bought an inexpensive waterproof mattress pad, just in case I ever needed the waterproofing. That goes over the alternating air overlay and doesn't stop the pressure points from changing but does soften them some (a good thing--they can become painfully like 'knobs' under the bones). Then, I bought a machine washable and dryable sheepfleece mattress pad which I lie directly upon, which it is made for.

I also use a pillow under my knees. You will need to try various pillows, but I liked the "boudoir size" feather pillow--firm but not big.

So, for the training part... If I awoke, which I did every night for the first week, but in the following weeks less frequently, I would first play with the electric controls; raising my feet often helps, for instance. If my back hurts, I very occasionally pull my knees up to my chest--but this is very hard now. A friend (IrisMarie) gave me a tip: tie a long scarf to each ankle, and pull on the scarf. (I haven't sent anyone looking for scarves, yet.) Also, if I raise the foot of the bed all the way, it's easier to pull my knees up. Many times if I simply refused to turn over, I'd drift back into sleep until morning. Now it is impossible for me to turn over in bed.

What I do in case of real back pain, after pulling myself toward the "head of the bed" to make sure I'm positioned correctly, is to pull the knees up. I have my feet then on that knee pillow and let my knees fall to either side (possibly the only way I'm still 'flexible') and often go back to sleep in that position. This is very rare.

It helps me to spend time in the early evening with my feet to chest, then knees dropped to the side as described above. The soles of my feet are against each other. This stretches out my back, making it more likely that the back will be comfortable all night. If anyone whose legs are still working well reads this, a tip: Begin now stretching your legs, sitting with feet together on the floor, dropping knees. The more flexible we are beforehand, the easier it is to stay flexible.

As an aside, please know that I was never a "back sleeper" until this time. Even now, in order for my head to be comfortable, I have a small pillow jammed into my face and neck area so that my head neither falls all the way over nor has to be straight up. It remains at a comfortable angle.

Last edited by David : 02-25-2012 at 06:10 PM
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Old 07-19-2010, 06:54 PM #2 (permalink)
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Default Re: How I learned to sleep without turning over

Ann, Thank you for the very detailed advice. Thankfully I've been a mostly back sleeper most of my life, but I do like to turn to the side. Right now we have a (heavy) ladder back chair pushed up against my side of the bed and I grab onto it to help turn during the night, and, I plan to order a rail soon. I have a hospital style queen sized tempur- pedic bed, and have never regretted the investment.
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Old 07-19-2010, 08:04 PM #3 (permalink)
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Default Re: How I learned to sleep without turning over

It's wonderful that your bed is hospital style, Diane. I had thought in the beginning that we'd get another King sized bed, but get an electric one with dual controls. Phil was leary of putting so much money into something totally new to us, as we'd had a standard mattress. My ALSA worker, when asked for advice, was leaping through the phone lines telling me that they'd get me a loaner to try with that alternating air mattress overlay. As I'm expecting IrisMarie to ask the obvious, (gotcha, IrisMarie!), I'll just say straightforwardly that a hoyer lift does a great job of carrying the patient to a different room.

Diane, you sleep with a Bi-pap, don't you? So... you can sleep on your back while using a Bi-pap?
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Old 07-19-2010, 08:34 PM #4 (permalink)
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Default Re: How I learned to sleep without turning over

Hi Rose,

When I checked into the TempurPedic, it looked to be around $3000. Is this about what you paid or did you get a higher end mattress?
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Old 07-19-2010, 08:41 PM #5 (permalink)
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Default Re: How I learned to sleep without turning over

Ann, back and sides are fine with the bipap. I can do everything but talk with it on. The hose is attached to mask with a swivel that turns 365, and its pretty long. I'm thinking that you're thinking (lots of thinking going on LOL) that you'll be using a bipap soon. One thing, secondary to fit of the mask you choose, is the headgear the mask style comes with. This is not only in reference to various hairstyles the mask will create during the night, but also how it fastens. So long as you have someone to help fasten it in place its not a big deal, but various brands seem to like different gadgets to fasten with. The mask I have now, I like best of any I've had, its by Respironics, it has the gel insert, is a triangle that fits over my nose only, and the clasp is easy to undo. There are actually four fasteners, but I only have to open the one to put it on or take it off.
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Old 07-19-2010, 08:57 PM #6 (permalink)
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Default Re: How I learned to sleep without turning over

Missy,

I spent a long time in the sleep shop. The sales guy actually did a good job, and insisted I try the various level mattresses, and each one for the same amount of time. One of the main things I checked, was how easy it was to turn over. The softest ones were not as easy as the one I chose. I think it was one level (softness)up from the original mattress. It is not a pillow top. I gave the information on the one we ended up with to Hopeful Warrior, (a while back) but I can't remember now what it was called. The combination of both pieces was well over $3,000. The store threw in the mattress protector, and its nice, really silky and thin material. What brings up the cost is the foundation (they call it the Ergo system. That part was about $1,700, this is what moves the mattress. The actual mattress is the same as for flat beds. I don't know if Medicare would have paid toward it? I never thought about this option until someone mentioned it here on the forum recently. Honestly though, it is wonderful to have it, and although I still cringe when I think about what we paid, I'd do it again with no hesitation. Another nice thing about this, is both people can enjoy sleeping in the bed, one of the few perks out there for CALS.

gotta go, my laptop battery is beeping!
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Old 07-19-2010, 09:01 PM #7 (permalink)
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Default Re: How I learned to sleep without turning over

Thanks Rose!

I looked at the Ergo package ($1300) and the Advanced Ergo package ($1700) - couldn't really see what the big difference is. I'll have to check that out in the store. The mattress I looked at is 2 steps above the original. It "read" firmer which I think would be better for my husband. We'll definitely have to go to the store and check these out. Does it premanently replace the need for a hospital bed?
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Old 07-19-2010, 09:21 PM #8 (permalink)
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Default Re: How I learned to sleep without turning over

When the doctor advised Rick to sleep at a 45 degree angle, we bought a Sleepcomfort bed. He sleeps on his back with the Bipap machine on and puts a pillow under each elbow so that he doesn't slip down toward the foot during the night. He keeps the knee lift all the way raised to take the pull off his hips. He sleeps like a baby in this bed. It also has the waterproofing feature in case of future need and cost $3400.( all cost and SH included) We probably could have had at least some of the cost paid by the VA or ALS association, but went ahead and purchased it ourselves. It will always be used by others in the family after we are long gone. Most people would lie the bed flat for sleep and raise it up only for reading or watching television. We need it for him to sleep half sitting up.
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Old 07-19-2010, 09:39 PM #9 (permalink)
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Default Re: How I learned to sleep without turning over

One reason that pillows are needed while sleeping in an angled bed is that the person's body: torso, upper leg and knee to foot lengths are so individualized, and the hospital bed is either regular or extra long, meaning there isn't a lot of room for these personal differences. I'm fairly short, so I make the pillows do what the bed can't achieve. Phil is quite a bit taller than I, so we couldn't both be comfortable in the same arrangement. At least this is my current thinking.

Marjorie, I imagine you sleep flat, so that the angles don't trouble you. Ah, yes. I can see how this would work well.

Rose, no Bi-pap plans in the near future but I like to get my thinking done ahead of time. I'm really glad it works so well for you. I will keep your Respironics with triangle/gel mask in mind. Thank you.

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Old 07-19-2010, 10:48 PM #10 (permalink)
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Default Re: How I learned to sleep without turning over

Missy, if you purchase a bed now it will replace the need for a hospital bed later. I am about as disabled as a person can be and still be transfered to a power wheelchair during the day.

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Old 07-20-2010, 12:27 AM #11 (permalink)
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Default Re: How I learned to sleep without turning over

Joel,

Do you know what bed in the US your bed translates to? Is it like the Sleep Number or the Tempurpedic? I didn't see yours available in the States.
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Old 07-20-2010, 01:00 AM #12 (permalink)
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Default Re: How I learned to sleep without turning over

Ann, thank you for the great instructions! Who's calling who a great teacher? It sure illustrates how different we all are, I can't even lay on my back let alone sleep on my back. My throat just completely closes up and I am gagging unless I am almost completely upright or on my side so no back sleeping for me. I am starting to have some difficulty moving around in bed but can still roll from one side to the other and my sleeping brain has even figured out that I can only go one direction because of the face hugger (bipap) hose.
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Old 07-20-2010, 05:43 AM #13 (permalink)
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Default Re: How I learned to sleep without turning over

you know? lifts attached to ceiling rails DO NOT EXIST IN FRANCE.
The hoyer lifts are much too big for my small rooms so we came home with a verticaliser. It takes my weight by the slings under the arms and backrest - no seat, so good for transferring to toilet. But extremely undignified. Remember dignity?that stuff that used to matter?
Ah well............
Love to all
And I hope you noticed the bit about attaching long lightweight scarves to the ankles so you can move your legs like a marionette. It really does help!
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Old 07-20-2010, 07:35 AM #14 (permalink)
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Default Re: How I learned to sleep without turning over

Barry,

try moving your machine closer to the bed, you should be able to turn to either side. We have a queen sized bed and the hose of the bipap is long enough to go clear over to the other side of it. When Don is here I'll lay up against him, etc. (I know what you mean about the throat closing down when laying flat).

Ann,

The time you took to describe the little details of your bed set up will help many. Barry's right, you're a great teacher Thank you also for talking about the need to stretch out.

Missy,

Consider getting the bed that is split so each side can be adjusted, that's the only thing I dithered about, and ended up not getting it. Down the road we may wish I had. Sol far its not been an issue, though.
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Old 07-20-2010, 03:45 PM #15 (permalink)
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Default Re: How I learned to sleep without turning over

Quote:
Originally Posted by Miss View Post
Joel,

Do you know what bed in the US your bed translates to? Is it like the Sleep Number or the Tempurpedic? I didn't see yours available in the States.
WOW, I did not realize it was only in Canada. Tempurpedic is likely the closest.
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