What to do with arms at night?

[Balexander]

Hi,

My ALS started in my arms, so consequently I can no longer move them. When I go to bed I have them propped up on two pillows, but within a few hours they always slide off where my hands end up in my lap.

I was wondering what other people do in my situation? When they are on the pillow, I can still slide them a little to reposition, but once they're in my lap, they're stuck there till morning. I don't want to wake people out of a sound sleep to put them back, but some times I wake up and it's hours before I can fall back asleep because they are so uncomfortable.

Thanks and appreciate everyone's helpful input!
Bryan

 

[cervus]

Hi Bryan. We use bolsters under my husband's arms. They might be more helpful in keeping your arms in place? They don't seem to shift at night. He can still move his right arm a bit. Good luck!

 

[Balexander]

Thanks for the reply cervus! Bolsters are round pillows right?

 

[cervus]

Round and cylindrical.

 

[Miss]

My husband keeps his out to his sides a bit. His hands bother him when they close, so I put rolled washclothes under his fingers to keep them open.

 

[LizT]

My PALS keeps his arms to his sides when in bed. He wears soft braces on his hands when he sleeps. Try having your arms slightly bent with your elbows out and your hands up against your legs. Or maybe you need flatter pillows.
Good luck

 

[Balexander]

Thanks for all the suggestions, I might try some...

 

[brooksea]

My husband tried the hand splints, but they were uncomfortable. I put his pillow to the side a little ways and I put one arm, with palm upward and flat (fingers splayed), under the pillow to anchor the arm/hand. The other arm goes on top of the pillow with palm downward and fingers splayed. He sleeps on his side for most of the night in this manner. It seems to have helped.

 

[notme]

There is one more pillow you can try. It's a foam pillow with cut outs for your arms to rest in.

When you are on your side, one arm can be under your pillow or near your head, with the other bent at the elbow. Pillows help prevent pressure point pain.

 

[Balexander]

Thanks, that sounds like what I need!

 

[rcharlton]

My arms are like a couple of dead mackerels hanging by my side.

I sleep on my side too usually with my arms folded against my chest.

BTW - if you are still able to walk you might be interested in this brace I found. If I stand for any extended period of time, my left shoulder starts to dislocate. The only advice my OT could give me was to stick my hand in my jacket pocket. That didn't work. Also, my shoulders and neck could not tolerate the weight of a sling. But this brace puts the weight around my tummy.

ProCare Elastic Shoulder Immobilizer - The Brace Shop

 

[Gentleman Jim]

Bryon,

Eddie uses pillows or towels in pillow cases. We too use hand splints. Only one hand at time so Eddie can
still honk his horn. The elbows can be velcroed with the hand splints. But, soft elbow pads, foam, do the
job nicely.

Eddie cannot walk, talk, or barely move. So, the V-max, I-max eye gaze is needed right now. Very close to
being locked in. We do keep his arms comfortable.
Major problem for Eddie is his bowels. Gut ache's, colon ache's actually. What do some of you do for that?

Hope we are able to suggest the solution.

Jim

 

[notme]

Bryon,

Eddie uses pillows or towels in pillow cases. We too use hand splints. Only one hand at time so Eddie can
still honk his horn. The elbows can be velcroed with the hand splints. But, soft elbow pads, foam, do the
job nicely.

Eddie cannot walk, talk, or barely move. So, the V-max, I-max eye gaze is needed right now. Very close to
being locked in. We do keep his arms comfortable.
Major problem for Eddie is his bowels. Gut ache's, colon ache's actually. What do some of you do for that?

Jim

Hi Jim

It"s possibly gas pain. Perhaps ask the doc about something like gas-x? If bowel movements are not normal, he should really be checked out by his doc.

 

[Gentleman Jim]

Thanks not me.

Eddie is pretty far advanced. They really don't know what to do. Have you reached that part yet? Eddie has
been to John Hopkins, Mayo, Cleveland Clinic. They said; "Go home and die." I mean that.
I have been to Stem Cell op's. We flew a Doc out of California to Mexico to operate.

You want me to ask a doctor? They don't know. They can guess as well as we do.
I take his peg tube and burp it, they thought that was a good idea.. I am just saying that ALS patients
are not able to grunt or have a bowel movement voluntarily at some point. Their muscles don't work.

So, our guess is as good as yours. We will just manage the pain at some point. But. we are willing
to try something new.
I laugh when I hear someone tell us to ask your doctor.

Thanks anyway,

Jim

 

[notme]

Hi Gentleman

I meant to ask the doc if gas-x was SAFE and okay to use. It might help with severe gas pains. If he has hard stools, colace helps. Since you're burping the PEG--it's likely lower in the abdomen?

If his stomach feels hard, it's possible he has a bowel obstruction--that's why I asked about the BMs.

I'm not a doctor, of course--were it me, I'd try the Gas-X and see if it helped, though. I always hesitate to suggest any meds--as I have no idea what people's doctors have said about this or that med.

As a last resort, possibly an enema could help? I was under the impression that ALS did not affect the intestines. Be on the look out fever--as it's, of course, a sign of infection.

I don't know if he'd be allowed to have Beano. it is supposed to help prevent gas.

All these are OTC meds