Comfort

[vantec]

I hope someone can help me. I am getting bad cramping in my back, and in my buttocks, where I lost a lot of muscle mass. If I sit down for more than about hour, my butt really hurts. Has anyone found a cushion or anything else that would help? Both get better if I stand, but I am not able to do that all day long!

Laying in bed, is causing my back pain, and I try and stay out of it as much as I can, but you have to go to bed, sooner or later. Is there any special bed, or anything I could do while I am in bed, so I would not cramp and be in so much pain? Over the counter pain meds don't help.

Thanks,

Conrad

[Al]

Hey Conrad. Have you seen the egg crate mattress covers made of foam? Mine is about 2 1/2 inches thick and helps with the pain in my hips and shoulders while lying down. They're only about $50 for a hospital bed size. My wife thought it was so comfortable that she got one for her bed.
My wheel chair has a gel foam cushion and it is pretty comfortable. If you go to the sites selling chairs they have all sorts of them. You should be able to find something to fit the chair you use most.
AL.

[quadbliss]

Hi Conrad,

I am completely paralyzed from the neck down, so I spend about 12 hour a day in my wheelchair, and 12 hours in my hospital bed. For the chair I use a Roho cushion. This is an air filled cushion with many cells (fingers) that stick up to support your weight. The air pressure equalizes between the cells, allowing your butt to sink in deeper than your legs. This results in your weight being distributed evenly across the cushion. No pressure points. For the bed I use a 4" Temperpedic mattress topper. This also causes no pressure points. It is important to me because I can't move in bed. I bought my topper on-line. You can find them by typing "memory foam mattress topper" into your search engine.

Mike

[emjoi]

Yeah "Memory Foam". My dad had a square chunk of it that he would take around with him and put under him on chairs.
Like the inside of a seat cushion, but a bit denser and it would mould around whatever squished into it. Fun stuff to play with.... sink your fingers into it, then it would slowly return to it's original shape.

[quadbliss]

Al,

I am surprised. No comments about the fingers under your butt. I thought I would get you with that one.

Mike

[SoniaT]

Hi Conrad,

My Mom used an egg crate mattress cover made of foam on her bed and I made her a cushion from the same stuff for her wheelchair seat. It seemed to work for her.

I hope this helps a little.

Take care,

SoniaT
Vancouver, BC

[ChrissyWho]

We bought a Sleep Comfort bed that had a massager in it. It worked wonderfully for my husband because he was unable to move at all on his own but was able to change his positions easily with the remote. The massager helped to keep his skin intact as well.

Chris

[Teej]

My husband has the same Roho cushion as Mike, and our insurance provided an air mattress for his hospital bed that has been wonderful. My husband has severe back issues. The minute we got this mattress, his back stopped hurting. It is filled with air, similar to the seat cushion mike uses, and has three knobs that adjust the level of air that goes into the head, the middle and the feet, so he (using his caregivers) can adjust the air throughout the day as needed. Hope you find the relief you need! Blessings, Teej

[JACKIEMAX]

hello all,

i spend anywhere from 30 min. to over an hour each time i get on the computer to come to this forum. i am 'computer challenged'; therefore i am unable to always find answers to my posts.

i would ask that if any member or moderator wants to share a thought or message with me, please make it a private message that will come straight to my e-mail address, this way i can be sure i receive it.

thanks all,

jackiemax

[vantec]

Thanks Al, Mike, emjoi and Sonia. Al, I don't know what this forum would do without you. You are not only helpful, but are so funny, you can make me feel like I did before all this started.

But now I have to decide if I should go with an egg crate mattress cover, or the Temperpedic mattress cover. I sleep on my side, but wake up on my back. Would that make a difference in the choice I make?

I am going to buy the Roho cushion, and the gel foam cushion. I want to find out what is the best, so the only way to find out is to try both. I used to be a bike racer, and I know how much the gel seats helped my butt from hurting on my 80 to 125 mile rides. You know, I think one of things I miss the most, is that I can't ride my bike anymore. When I was still able to drive, I took my digital camera, and drove the routes (some with steep 20 degree grades), and took pictures of my favorite spots. I printed the photos out, and when I look at them, then I dream that I am riding my bicycle.

Conrad

[Al]

Hey Mike. I totally missed that one. It's been so darn cold up here the last week I must have brain freeze. It's been down around 0 F. That's cool even for here.

Conrad. Is there a large drug store that stocks medical supplies near you? Up here we have Shoppers Home Health Care and they have samples of a lot of the cushions and even the mattresses. Check the phone book for your area under medical supplies or the net and you might find a place to test drive the stuff.
AL.

[quadbliss]

Wow! It is about 50 here. I don't even know what 0 feels like.

Mike

[Beebe]

Hi Al , We've finally had a freeze last 3 days. Wind chills were below 0 yesterday. Suppose to go to 30's tomorrow. We were liking that 60 degree weather we were having. Don't like this cold! Brrrrrrrrr.y Best to all, Beebe

[CindyM]

Hey Liz- you're over near Buffalo, right? Are you guys getting dumped on with snow? Stay warm and take care, Cindy

[quadbliss]

Hi Conrad,

I was thinking about your Temperpedic vs. egg crate dilemma. As long as you can still turn in bed, I think the egg crate is a better choice. I also started with one of these. The memory foam tends to mold to your body. This is good for relieving pressure points, but makes it more difficult to move.

Mike

[vantec]

Hi Mike,

Yes, I can still turn in bed, but it is hard to know how much longer I will be able to. That's always the big question. Everyday I think that this may be the last day I can walk, but I was able to today. So I guess I'm always underestimating how long I will be able to use this or that muscle.

With that in mind, I will purchase the egg crate. Thanks for letting me know from your experience.

Conrad

[liz]

Hi Cindy -

Nope - Albany is jusy east of the Mohawk Valley which is usually as far as the lake effect snows stretch. We've got cold (below 10 degrees) but only enough snow to cover the grass.

Am going for my second ALS clinic appointment today. Wonder what will come of that. Now that I'm dx'd I kind of just want to take my Rilutek and be left alone. Things can progress as they progress without commentary from the docs and I could ask for help when I think I need it. I'm afraid they'll spot some early sign of progression in some part where I'm not noticing problems. Then that will start preoccupying me. This disease really messes with my head. :-?

Liz

[CindyM]

That is SOO like I would feel. Sometimes a little denial is in order, don't you think? And neither one of us is likely to get stuck there for long, so that makes it doubly OK. Hope the visit went well and hope your characteristic courage returned in time for it! Love, Cindy

[liz]

Thanks for the moral support. The appointment went just fine. My breathing is still good, and no real significant changes were noticed since my last visit three months ago. The folks at the clinic are really very nice. The doctor said I don't have to come back for four months. So I guess I got what I wanted -- to take my Rilutek and be left alone.

[CindyM]

Glad to hear that, Liz. On another note, did you happen to catch the segment on the CBS news last night (I think it was CBS) about a special ski program for handicapped youngsters? It is somewhere out in the Adirondacks, I think. The kids were so cute and the equipment amazing.

[MtPockets]

I have been having trouble turning in bed for some time now and without my trapeze bar I would not be to turn at all. You might want to consider getting one of these to help with getting in and out of bed as your muscles get weaker. Just a thought.
God Bless
Capt AL

[Al]

Hey Capt. AL. Can you still do tricks with the wife on the trapeze? I don't have the hand strength to hold on to a bar like that.
AL.

[MtPockets]

Sounds like my wife has been online behind my back telling on me again. Opps!:roll:
God Bless
Capt AL

[vantec]

Hey Capt AL,

I didn't think of getting a trapeze bar for my bed. It will be only a matter of time before I need one, so thanks for idea. How was yours mounted? To the bed, or free standing?

Conrad

[MtPockets]

It's free standing with long feet on the bottom. Adjustable for height, length, etc. Sometimes it's not to steady if I put my weight on it all of a sudden, but it helps a lot. I've had it for about 2 years now. I got it originally for my bad back.
I can not roll over or get out of bed without it.
God Bless
Capt AL

[vantec]

Hi Capt AL,

Where would I be able to buy one of these free standing trapeze bars? Money is not a problem. I've lost about 35 pounds since this all started 8 months ago, and I am down to 145 pounds, even though I eat as much as I did before. I don't think it will be that unsteady for me, at least I hope not. I can still get out of bed, but I have to pull on the bed sheets, and use the other arm to push off the mattress, to get out of bed. It hard to know how much longer I will be able to keep doing this, so it would be a good idea to buy the bar now.

I have bulbar onset ALS, and my voice is starting to get nasal, and I'm starting to choke on my food. I have to be very careful when I eat.

The thing that bothers me the most is the painful cramps. I am going to see my Neurologist on the 26th, and I sure hope he can give me something for the pain. Does anyone else have painful cramps, and what to you do about it?

God Bless
Conrad

[Howdy]

You can find them listed on the Web, Just type in free standing trapeze bars in the search and it will bring up several sites that sell them. They start at about $135.00 . Howdy

[MtPockets]

I got mine from the same people who supplied my wheelchair, bedside potty, and shower chair. Most Medical supply stores that sale to handicapped people would probably have one.
God Bless,
Capt AL

[19PAMELAVGIRARD56]

Conrad, Your doctor can prescribe medication for your cramping. I use a gel seat cushion and an air mattress on my bed. Sure hope this helps

[vantec]

Pam,

I'll be sure to ask my doctor to prescribe the right medication for my cramping. It will be a great relief. I ordered the gel seat already, but I think I am going to get the egg crate mattress cover for my bed. Thanks for your help.

Conrad

[carolina girl]

I hope someone can help me. I am getting bad cramping in my back, and in my buttocks, where I lost a lot of muscle mass. If I sit down for more than about hour, my butt really hurts. Has anyone found a cushion or anything else that would help? Both get better if I stand, but I am not able to do that all day long!

Laying in bed, is causing my back pain, and I try and stay out of it as much as I can, but you have to go to bed, sooner or later. Is there any special bed, or anything I could do while I am in bed, so I would not cramp and be in so much pain? Over the counter pain meds don't help.

Thanks,

Conrad
Hey Conrad,

I have severe cramping and muscle spasms. My sister gave me a wonderful and simple device. It is a piece of cotton fabric large enough to fit around my neck or other small areas and it is filled with flax seed. It looks like a small pillow. You place it in the microwave for approx.2 minutes and it is amazing how quickly your muscles will relax. she had a friend make it for her. So if you know someone who can sew, all they need is fabric and flax seed. A very simple device and very inexpensive. I can't get over how fast my muscles relaxed. I am getting ready to use it now. Hope this helps.

Carolina girl

[MtPockets]

Hi Conrad,
After searching for hours I finally found a page that shows the Trapeze bar almost like the one that I have.
http://www.1stseniorcare.com/ProductImages/Tuffcare/P250small.jpg (http://www.1stseniorcare.com/index.asp?PageAction=VIEWPROD&ProdID=121)

You can see it at:
http://www.1stseniorcare.com/index.asp?PageAction=PRODSEARCH&txtSearch=Trapeze&btnSearch=GO&Page=1

Mine is fully adjustable for height, length of chain on bar, etc.

Be careful of the spelling if you do a search and you will find it quicker. I discovered I was spelling trapeze wrong for the past 2 hours.
I hope this helps.:-D

God Bless
Capt AL

[shreejc]

Hi Everybody,

Today is my first day in this forum, and I'm having some difficulty in finding answers to my queries...however, I found one for my most immediate query...my Mom who's been diagnosed in '03 is now having severe pain when she sits for long hours on the chair..thanks for your suggestions n experiences...
I'm off to get some Memory foam for her :-D

[midwestgirl]

Welcome to the forum! There are lots of caring people and helpful ideas here.

Gel foam, or memory cushion, is definitely a good idea - it was one of the first things we got for my mother. However, good positioning is a critical factor in comfort. When you say, "spends a lot of time in the chair" I am assuming you mean wheelchair? The size of seat/ distance from front to back (knee to tailbone) is critical. Too large, it either cuts off circulation to lower legs or causes lower back pain and skin breadkown from excess pressure on the tailbone when leaning back. Also, height from seat to floor/ footrests - again important in reducing swelling of the feet. Even the height of armrests are important.

Also, just frequent repositioning and range of motion exercises can minimize many aches and pains.

[MtPockets]

Hi Shreejc, welcome to the forum.
I don't know if you have just been browsing or have used the search feature above. It can help locate threads and specific discussions that may help you.
Feel free to jump right in though and ask about anything you need information about.

God Bless
Capt AL