Stop sliding and slumping of pals

[MupstateNY]

My ALSA chapter has a policy of not lending anything breathing related. However, my coordinator told me that one can rent a BIPAP.

 

[lgelb]

You can't buy or rent a BiPAP without a prescription, legally. But as we have mentioned, any doc can write one. The difficulty is meeting reimbursement criteria if reimbursement is the goal. Otherwise, all you need is a script and a credit card.

There is no point in paying exorbitantly to rent a BiPAP when you can buy one for <1k.

Let's not turn this into a BiPAP thread, though -- we should try to stay on topic for future readers.

Anyway, if Tom's unstable in bed, a mask and a hose could be just more issues in the mix. So I would address the positioning first.

As for removing the sling, we did that by using the bed head/feet, just as in the wheelchair. After removing the sling from under the legs by lowering the feet, you reset the foot of the bed, lean him forward after dropping the head and remove the back of the sling.

I don't believe in leaving the sling under anyone in any chair or bed. Pressure injuries in ALS can be forever just as in SCI. And it's not necessary.

 

[Jimi]

Laurie is absolutely right. The sling should not be left under unless it just a short bathroom trip

 

[affected]

Lots of CALS here over the years have left slings under but it is a contentious debate.

I also found that once I got the hang of putting Chris into bed correctly (love that term 'the drop zone') he did not slide down and slept in there all night. He would watch TV for several hours and then fall asleep for 7-8 hours).
BUT, I could spend around 30 minutes from out of the bed to fully set up in there, to get him right. Time well spent.

Thanks Laurie I was sure I remembered where Toms bipap is up to, but I just don't hold the details of each person here well! Whenever I think I know and comment something I'm wrong. When I check, of course I had remembered haha
I feel that all these things are going to ease once he is on bipap as he will feel safer and more settled once you get him to bed.

I hope you get a sling that works better for your needs too.
Be careful how that pulley system is going to work as you can't do anything that will pull on joints with a PALS. If he figures something workable out it will be awesome!

 

[SeaGunny]

My PALS is slumping (Bulbar ALS), She leans to her right. Right arm is affected and she is unable to use it. She also has "droopy head" meaning her head drops until her chin rests on her chest. We tried the Medieval looking spring thing neck brace which she promptly tossed after a 1 hour ride home as it was hurting her clavicle and chest. We then tried a soft neck brace but that helped but was nowhere satisfactory. She then found one that looked like it would do a great job with an adjustable chin rest. That worked until we tried getting her into a position so she would be able to use her eye gaze machine. Her chin slipped out of the chin rest and into the framework.

When she is in sleep mode she still tends to roll over to her right side, head hanging. Pillows, pillows and more pillows, of every size and shape I can find!

Any ideas, let me know.

 

[lgelb]

In addition to adjusting the bed as described above, we used open latex foam rectangles scrounged from a foam store (prob available on line), to where his arms were in his lap and the blocks wedged into the arm rests to in turn position the torso. It's important to know how to move the arm rests in toward the body more as the PALS loses weight/muscle, so you get max support. They should also angle.

Against the headrest, we did use targeted pillows, but there are those headrests that cradle to size.

In bed, kind of a similar setup, fully supporting the elbows with travel pillows and longer foam. Instead of piling the head pillows, just one for stability, that cradles the head/shoulders, and we used microwaveable heating pads on the pillow [the heavy fiber-filled kind; ComfortBags makes some nice ones] next to both sides of his head to keep the neck straight.