Comfort

[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 diagnosed 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]

Trapeze bars

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