Sore bum

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Bestfriends14

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Happy 2022, everyone.

I've looked on the forums and found nothing specific to my husband's issue. His bum is sore all. the. time. He has a Roho cushion, properly set up for his body weight and size, and he cannot sit in his wheelchair for more than a couple of hours. As well, he gets incredibly uncomfortable in his recliner. His lower back hurts, his bum hurts, and his hip hurts. No matter what I try, cushions, creams, or whatever, nothing works to get him comfortable.

Also, I think his left side oblique muscles are atrophied because he now always tilts to the left. Is this a thing with the core muscles in ALS? One side at a time? That seems to be the side of his body with the worst pain. Suggestions?

TIA.

J
 
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lgelb

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I'm sure you're already doing this, but are you using tilt/recline in different positions throughout the day? Using the foot rests and elevating them? Are his shoulders/arms in a good neutral position, maybe using foam pillows, bolsters, or arm rest liners? When the upper body slumps, it all kind of goes.

Yes, core muscles can go one side at a time. We put a U shaped pillow in the gap between the headrest and the seat in a way that we could control that, sort of. That kind of a pillow might also work in a recliner or lift chair. A soft cervical or bed-type collar may also help. In theory, depending on the head rest, you can also bend or have it bent/angled (on its ball joint) to accommodate the asymmetry as well, and there are replacement head rests such as the Savant that may have more flexibility than yours.
 

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I completely agree that you may need to start a regime of changing position for him really frequently. Every hour might be needed, and doesn't need to be a huge change but needs to change where the main points of pressure are.
He may need to move from wheelchair to recliner to bed as well, half the morning in PWC with changes in position, then into recliner, then early afternoon into bed for a while.

The wedges and pillows to help support his position can really help the other pain issue.

So sorry to hear this is happening, it can be really cruel indeed.
 

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I should have noted, also, that lateral and/or thigh supports, added to the chair or adjusted if you already have them, can help.
 

Bestfriends14

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Thanks, Tillie and Laurie. He eschews any suggestion I make into trying to find solutions and, being the crappy caregiver I am, I got frustrated and snapped at him this morning for being difficult. I wonder if any PALS can chime in to say what worked best for them. I think his bum pain is the worst but I'm not sure if there is something I can put over his Roho cushion.

It's frustrating, I'm tired, and we're both sick of being each other's only company 24/7 for the past two years. This disease is horrible in the best of circumstances, but throw in a pandemic and it makes things even more trying. Sigh...
 

Nikki J

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I am sorry. This is hard for both of you. When you say sore you mean uncomfortable not impending breakdown? You didn’t say how much of the above you have tried? Tilt and frequent change of angle I would think would be helping? For the low back does he need extra lumbar support? I do now to sit at any angle.

you are doing an awesome job and he knows and appreciates it even if he is too tired and frustrated to say it just now sending virtual hugs to both of you
 

Bestfriends14

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Thanks, Nikki. Discomfort with no breakdown, thankfully.

I've tried a rolled up towel between his left hip and the side of the recliner and a small cushion, too, to no avail. Under his bum for his wheelchair, I've tried a soft blanket over top of the roho, but that doesn't help much. I have not tried any type of lumbar support in part because of ignorance; I'm not sure what to use for his lumbar area. He's tilted back, but his head rest sits just above his head so it makes him nervous to fully tilt back. It is the right height, but the actual piece that holds the head needs to be tilted down more, which I can't figure out how to adjust.

Sorry if I'm blathering, but I'm tired and have just found out that the caregiver's girlfriend tested positive for covid, so the whole thing with thinking we were covid risk free, is no longer the case. As such, we're going through the whole testing thing again. 🙄
 

Nikki J

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If you aren’t able to tilt much that might be a large part of the problem. I bet someone here can help you figure out the headrest. Maybe post pictures and pwc info?

i had to experiment with the lumbar support the ones you buy didn’t work at all for me but a small thin throw folded in a particular way worked
 

Bestfriends14

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Wayne has a Quatum 6-Ilevel chair. I just spent an absurd amount of money on an overlay and lumbar support cushion from Amazon. They can easily be returned if neither work. Here are a couple of pics of the giant headrest. It looks like it was designed for Shrek.
 

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swalker

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I have had issues with my hips and bottom. Here is what has helped.

First, having the wheelchair very carefully configured to provide support where I need it is very important for me. That includes support in areas away from the hips. If the entire chair is not set up just right, then my hips and/or bottom will hurt.

I use lateral thigh supports as well as lateral thoracic supports. They make a big difference for me.

Second, I find that my hospital bed really does help with hip and bottom issues. My bed has an automatically adjusting air mattress that is designed to help prevent pressure sores. I have not had any issues with pressure sores since I started using it, though did have some on my heels before I started using the hospital bed.

When I am in a somewhat sitting position, the hospital bed provides support along my entire spine down through my hips, upper legs, knees, and lower legs. That takes pressure off any particular joint in the hip area and really seems to help me.

Finally, I have found that passive range of motion therapy provides the greatest benefit. It is absolutely amazing how much it helps.

Steve
 

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Sorry you are having so much trouble getting comfortable. I know how miserable it can be. Most days I spend 22 hours in my golden technologies lift chair. I have modified the chair remote so I can control it from my computer or phone using head tracking. This let's me adjust the position myself. The chair has a power headrest which is important. Also has the brisa fabric option which breathes well.
Important for comfort:
No slumping
I recline all the way back in zero gravity and we push on my legs forcing my butt into the seat. Then raise the back rest up while holding legs so I don't slide forward. When fairly upright we flip my upper body forward and then back. This gets my upper body unjammed and my lower back and butt all the way back and supported
When leaving legs straight we use a small piece of blanket tucked around knees to keep my legs and hips aligned
Midway through the day I will cross a leg, alternating every hour.
Before bed I bend both legs up (frog?) and put my arms up behind my head for an hour.
I must regularly recline far enough back to take weight off my butt. If not I will be in serious pain
I am very comfortable like this. Paralyzed from shoulders down and not much padding on the behind. Been sleeping in my recliner since 2017
Hopefully this is useful. Good luck, Jim
 

Bestfriends14

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Thank you so much, Steve and Jim. I'll try your kind suggestions and hope that Wayne finds more comfort.

Please stay safe and take care.
 

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ViscoSoft 4"Pillow Top Memory Foam Mattress Topper, TwinXL, Extra Long

Medokare Bed Pads, washable underpads, 36"X52", water resistant and reusable


I have been sleeping in a recliner since 2017. I use the mattress cover above. Without the foam cushion. And my caregivers fold a incontinence pad under me. When one side sinks, they pull corner to set me right. Most days I am very comfortable and peaceful.

(commercial links removed)
 
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