Any Helpful sleeping tips

[Mahealani]

Aloha again:

You are all so knowledgeable - I look forward to all of your advice so here's another question. I have most of my pain in my shoulders, legs and upper arms at night when I lay down. I can still "inch worm" around my bed with my legs - my arms don't have a lot of strength. I am mostly on my back at night and a little on my sides but my shoulders and arms are always sore. Any advice is greatly appreciated! What type of matresses are you using?

Mahea

[beverly rees]

Hi Mahea,
We were very fortunate to have a friend give us a mckroskey bed that you can adjust the head and feet. We bought a new mckroskey mattress for the bed and it has been wonderful. My husband has siginificant weakness in his arms and hands. This bed is lower to the ground and with all the controls he is much more comfortable. It is also easier for him to get out of bed.

I know if we would have bought both the mattress and bed new it would have been quite expensive. The new mattresses alone cost us 3,000. However,I am sure if you check out other manufacturers they might be more reasonably priced.

I hope this helps. Bev

[Jane]

Hello Mahae:

You might need to use some pillows to support your back, legs and arms. They can be positioned so that your arms are not just kind of hanging when you lie on your side. Use different sizes for different areas, Large body pillow works well for back support.
If you can get a pair of some slider sheets ( regular polyester satin ones work well too) it will help you to move in your bed and also caregivers will be able to position you easier.
Alternating pressure air mattress work very well, but these ideas might help you, hope so!
Take Care
Jane

[Phil M]

Waterbed helps me, just hard to get out of it in the mornings.

[Jennifer51]

I have an electric bed, which we bought many many years ago, before the beast arrived..it is coming into its own now, I find I need to change the position all through the night. Whilst on a recent in hospital stay, they gave me an electric bed with an air mattress, which I found to be the most comfortable I have ever slept on. I am in a similar position to you, can only inch around my bed, and have terrific pains in my upper arms and shoulders...trying medication for that.

[Micheline]

oh my, sleep what is that. I get about 3-4 hours a night. With me not able to move my legs, it is getting harder to move. I have to wake my husband up to push my hip up a bit so I can relieve pressure. It is more difficult to roll by myself now. I get stuck...lol and trying to sit up sometimes i can sometimes i can't. I am on a sleep aide it definatily helps going to sleep, but still hard to stay asleep. We still have our king size bed, it's easier for me to roll and dress. What am i gonna do when the hospital bed come, what am i gonna do with my hubby :(

[crystalkk]

Micheline,

I don't know how much upper body strength that you have. But I think it is "bgrown" he has pictures of these pulley type things that
help him to get up in bed.

[rick/Wpg]

Hi Micheline& Mahea....I am in the same spot...legs shot, arms going fast. I fought the dreaded hospital bed for the same reason...Joan and I are big time snugglers. Finally relented and so glad I did! The sides of the bed allow me to get sitting up after a fight and help with rolling to my side. The power lift on the head of the bed and the leg lift help with comfort and I now can sleep thru the night. The bed going up and down also helps make transfers to my chair much easier. We have a 'trapeze bar' sticking out the top that I can grab to help reposition myself too. We have solved the snuggling problem too;) Not as nice as our king bed was but we can make it work!
Jane is right...slippery sheets or pyjamas make a big difference too
Good luck!
Rick

[giangregos]

I am currently using a tempura mattress. I find that this mattress is firm enough to provide good support, yet molds to my body, allowing me to lay in full contact with the mattress. The downside of the tempura mattress is that it is expensive and not covered by health insurance. There is also electric spring system which provides full control as if in a hospital bed.

[Micheline]

Rick, when it came time to change beds. Did you have to purchase the second one for your wife. I think steve doesn't want to give up that closeness. I can't imagine getting dressed in a small bed. I'm used to rolling (with help) all ove the king, quite funny to watch...lol

[rick/Wpg]

Hey Micheline...sorry for the delay in getting back to you...had our Als Walk on Friday and took a day to recover:)
I doubt that you will get another bed covered by anyone.....however the hospital beds do have a lot of up and down adjustment so when you put a second bed alongside they will match up not bad.
Joan and I still snuggle in the hospital bed...although it is tough on her:(
We know what you mean about the closeness.....that is probably the hardest thing for us with this whole sitaution...but you do what you have to...not always what you want to!
You will find the rolling gets easier with the sides on the hospital bed....not to mention the trapeze bar:)
Good luck!
Rick & Joan

[Lorie]

Tim has an air mattress and loves it. Medicare pays for it as a rental.

Lorie

[mango]

My wife bought one of those "memory foam" pads for my bed. It's really nice.

But here I am, up late again because I feel best at the end of the day. I stretch, cramp, and grit my teeth all night, and only sleep a few hours at a time. Even if you don't have nightmares, you wake up to one. I takes me at least two hours to feel human again after getting out of bed in the morning.

[sharonca]

I actually slept 9 hours in one position last night. We bought a memory foam topper at Sam's. Really helps. And I take two Tylenol PM. And use a bi-pap. Before I was waking my husband two to three times a night.
Sharonca

[Micheline]

Thanks Rick, my upper body I feel is 60%. I finally had to ask home care to help dress me the other day. I tried for about 1/2 hour, gave up! My cooking days are coming to an end. I'm finding it hard to lift above my shoulder on my left side. So during the day i have the toaster, and microwave. My OT keeps suggesting the bed. But I am stuborn, ask steve...lol

I started on zopiclone, i get a good 3-4 hour block of sleep before I have steve adjust me, but find it hard to fall back to sleep. I do try to lie down in the after noon, 1) to help the swelling in the legs 2) i may sleep for about 1 hour. I loved sleeping in, I loved the 8 hrs plus if i wanted it...lol

[MtPockets]

I use an adjustable queen size bed with the space age foam mattress. Whatever that is?
The bed raises the head or the feet, also does massage, which I do not like.
When I am put into bed from my voyager lift, I do not move from that position all night. Flat on my back. I cannot turn anymore, and my wife cannot move me while sunk into the foam mattress.

The biggest problem I have is my legs will not lay straight at night. They fold out like a chicken wing. After about 4 hours of that my hip joints hurt. I have tried putting all sorts of pillows under my legs with no help.
Just take a pain pill and let it go for now.
You can see my set up on my control panel at:
http://www.alsforums.com/forum/album.php?albumid=115

[hopingforcure]

Mango,
I am like you, once I am sleeping I do not want to get up, I have such trouble waking up.. takes a time to get up and feeling human again, darn grinding of teeth, and such..

[Micheline]

MT, when I had a MRI done the hospital had a velcro strap (like the inside of the hygeine sling) and put it on my legs. I feel asleep with in minutes. My mother inlaw has asked acouple of ladies in her coffee group and they are making me one. For now, i use our dog leash for when i got out in the powerchair. I'm so NOT having chicken wing legs in public...lol

[MtPockets]

The wheelchair company, Pride is working on some special adaptations for my wheelchair now to try to solve the problem.
I had tried to use the Velcro but it cut off circulation even more and bruised my thighs.
My feet have swollen so much that it hurts for them to lay on the foot rests. The swelling seems to also be on the bottom of the feet. They are looking at some type of air bag system that fits over my legs and cycles pressure on and off to try to move the fluid back up my body. Not sure how that will work. They also said there is a piece of equipment that fits from the seat to the foot rest that is sort of like a u shaped thingy to hold me legs, that is padded.
At least they are working on something.
I have never seen a wheelchair for an adult with the footrest in the middle like this one. More pictures are on my Blog.
http://i160.photobucket.com/albums/t172/ShakeyMarble/ALS_KILLS/newwheelchair5.jpg

[Micheline]

I was talking with my OT today. For sleeping issues the is another OT that has come from the UK, suggested "blow up" type kiddy toys, so when I want to lay on my side first then switch onto my side/stomache she said i could be able to deflate it. Not to sure, but at least they are brain storming.

[hopingforcure]

Oh I just wish I could wave a magic wand and find us the perfect chairs, beds, braces, breathing machines..ETC... I would just wave for a cure, but I figure if I just ask for assistance we could have extreme comfort when facing this monster. Take care MT... You are such a sweet-heart, so sorry this is such a struggle for you..

[Al]

Hey Al, my manual footrests were like that. I just had power elevating footrests installed at $4000. Hopefully it will help with swelling. My feet look like yours. Fun wow.

AL.

[lovinglife]

My mom is in a similar situation and we just got her a pillow wedge from the medical suppy store. She picked out the largest size I think 15" or so and it looks like a mini ramp in her bed. But this allows her to prop her pillow on it and it is easier for her to get up from the bed since she is not flat on her back. Also she just started taking Melatonin available at a vitamin store- her dr. did prescribe a sleeping pill, but she is afraid of the sleep walking side effect. Get some rest.

[MtPockets]

That is one side effect many of us do not have to worry about, sleep walking. :lol:
I tried to get my wife to use the voyager lift http://i160.photobucket.com/albums/t172/ShakeyMarble/ALS_KILLS/VoyagerBR.jpg

to lay me on my side and stuff my back and legs with pillows. It worked for about 10 minutes and then the hip pain became too much to stay that way. That was first time in over a year I had tried to sleep on my side. I have very little movement in my arms and no strength, so it is impossible to reposition myself after lying down. I am in the same position for the night.

AL, I do not know if you saw the pics of my wheelchair in my CP? I am trying to have them remodel it to hold the legs in place. My old chair had separate leg rests and was articulating when it rose up and I still had trouble with my legs falling off when I would raise them.

I was sitting in the chair home alone one day when I smelled burning wires. I thought oh boy, what will I do if this thing catches on fire? Called the wheelchair people and they found a wire shorted out under the seat. Almost had hot pants. :roll:

I think some of us need to put on out inventors hat and design something that really works, if they cannot find something.

[acenoface]

I have a fully adjustable hospital bed and an electric inflatable mattress that constantly changes the parts of the mattress that touch my body. It is designed to reduce the risk of bedsores. As of right now, I sleep all night long with out needing to be adjusted. I used to have a problem that I think is common among ALS patients. The back of my heels would hurt pretty badly if I stayed on my back all night. I overcame this problem by using a foam pillow underneath my legs in a way that my heels hang off the edge of the pillow so that they do not touch the bed. I hope this is useful.

[Marjorie R. Wilcox]

Before we had our adjustable bed (very expensive) we took 9 pillows from Walmart and sewed them together in two strips of threes. You can fold double at the seam and place them under you where needed. Rick finds his arms and shoulders more comfortable if he puts a pillow under each elbow at his sides, and sleeps at least partially upright. When he turns over he tucks a pillow under his upside arm. It's like having a homemade feather bed.

Many don't have the money to afford the luxury of a memory foam mattress or an adjustable bed. As you wait to seek loans or assistance from the ALS association etc., the above suggestions work. Even though we have our adjustable bed, we still have several pillows all around us to use as needed. I have osteoarthritis so I 'pop" with every move. The bedding helps me sleep through the whole night.

[brooksea]

Majorie -

printing that one out. Thanks for that brilliant idea!

[eireannach]

Hi All

Hi Mahealani and Micheline,

When Trish finally went to the hospital bed we set up in our living room, we got her an air mattress that adjusted itself. You know... periodically up and down to relieve pressure on different parts of her body and alleviate the possibility of bedsores. As far as closeness goes, we bought a twin bed and bumped it up against her bed. We at least got to hold hands while we slept, which helped her immensely, especially if she couldn't sleep or was scared. That really meant alot to her.. and to me too!

I don't know if it would help, but she couldn't stand to lay on her back all night with her legs straight down. She most of the time liked her right leg cocked up like she was doing a flying jump kick! lol I relieved alot of pressure and helped her sleep.

God bless you all!