Need bed advice, please

[Jimi]

I've been living in my golden technologies lift chair for five years now. I modified the control so I can move the position myself via head tracking on my phone or PC . It's also controllable by voice. I have the brisa fabric and power head rest. This minimizes the transfers for the CG and peeing and positioning the sling is easy in the lift position. Never any sores or pain meds. For my boney butt and tail bone relief I found a thin air cushion on Amazon that has relief cut in for the tail bone. A little egg crate foam to relieve the pressure on my heals and elbows and I am comfortable and as little burden as possible . It's also very space efficient for apartment living . I rarely have to wake anyone up for help during the night. If my butt or neck hurts I can adjust my position myself. Not the ideal life, but I am paralyzed from the shoulders down and I'm not terrible to care for especially on my limited budget

 

[affected]

oh yes "duck-taped pillow/wedge configuration we landed on"
Back when I was caring for Chris we used to talk here about doing 'the pillow dance' - meaning that constant attempt to get the pillows positioned just right, only to find a week or a month later things change and it no longer works that way.
I'm not kidding, I had about 20 different shaped and sized pillows in a cupboard and I would try different combinations each time the current configuration stopped working due to progression. never tried duck tape tho - can't wait to hear!

 

[Tomswife]

Jim. Thank you for your post.
When the OT was here yesterday, we tried the bed again. We were hoping perhaps the twitching would subside. Tom had been alert and eyes open in the chair. We had him in the bed with head up at about 60 degrees and legs stretched with wedge pillow under. I looked at Tom. He was failing. Eyes closed. We test oxygen, 93. He looks terrible. Okay. Out of bed back in chair.

 

[MJT]

Jimi, you sound like a very thoughtful and considerate PALS. I'm happy that you found what works best for you, and the details about your chair are helpful. Thank you.
Tomswife, what twitching? Is it cramping or just the usual twitching? I'm thinking about y'all. I'm so sorry he isn't doing well. Please keep us updated.
Tillie, the pillow cupboard needs to be trademarked. You could make millions.

The duck-taped pillows/wedges/foam was a fail, but I McGuyvered some office clamps onto foam pieces I've purchased and wrestled them, along with pillows, into a custom mattress. Happy to report PALS slept through the night.

 

[Tomswife]

Affected. I am constantly swapping pillows! He points to the one he wants. That is later rejected for another. He also has a travel neck pillow. The changes are due to sleeping vs sitting to watch tv or use computer.

 

[Mary2]

Jimi, Are you using an eye gaze to write these long posts? My husband can now write short emails using the eye gaze...less than a sentence and I encourage him when ever he does. I am amazed at the extent to which you communicate. How do you do it?

 

[Jimi]

I can still move my head a few inches in every direction so I use head tracking. The easiest and fastest way is using the app Eva facial mouse pro. This is for Android and uses the phones camera to track my head. I paid for the life time pro version because it is the best app I have found and I have communicated with the developer in Spain and he is a good guy. Once you get the settings adjusted you really don't need more than an inch of head movement. Using the phone's smaller screen is easier than head tracking on my PC. Just takes practice. I also use speech assistant aac for Android for text to speech

 

[Mary2]

Jimi, That is amazing. My husband has head control. I will see if I can get him interested in this!

 

[Jimi]

That's great. It's way more effective than eye gaze. Hopefully it will work better. If you need any help with the settings just ask

 

[affected]

Was that a hospital bed you tried with the OT Tomswife?

 

[Tomswife]

Affected. Yes. Power hospital bed. I spoke with the respiratory therapist yesterday. He called on a saturday, good guy. I explained what is happening. He said the bulbar weakness can cause pressure on the windpipe. And that would cause respiratory difficulty. In the past Tom would say he could not breathe. This time he just lay there looking like he was going to pass out. The therapist will give this more thought.

 

[Mary2]

Is the respiratory therapist trying to say nothing wrong with the trachea and lungs themselves, but the bulbar region in the brain is impaired...the neurons there ...and this causes respiratory distress. I don't understand what the RT means when he says something is pressing on the wind pipe. It is good Tom can at least find comfort in the recliner.

 

[Bestfriends14]

That's correct, Mary. The lungs and windpipe are perfectly fine, however, the muscles surrounding the two areas are failing. As a result, the muscles dying press on the areas, causing distress. The weight of the dying muscles essentially smother the trachea and lungs, thus resulting in big issues for PALS.

 

[Tomswife]

Best friends14. Thank you! You explained it I think better than RT.

 

[affected]

I'm still not sure why you can't position him well in a hospital bed - does the leg section raise as well as the head?
My Chris was bulbar onset and never used bipap and had to be upright at all times, and he slept really well in his bed.
I just get the feeling it's about the positioning.
Lastly on this one, I could not position him properly in the bed without the hoyer. This allowed me to place him exactly and with the bed head already raised and ready.