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Sorry -- and just a simple thing. We live in a walk up apartment in NYC, so in the days when he used to want to go out, he would just sit down on his butt and scootch down, one step at a time, with one of us spotting. Not elegant, but got the job done without risking a fall. Obviously not...

Hi, Vitsra. I have not been on this forum since 2018 -- can't imagine what happened since we continue to deal with this awful disease. Slow progression does not seem like much of a gift -- more like pulling the wings of a fly. I also faced his desperate search for a cure or a "way out" -- stem...

I'm very late in replying, but wanted to pipe in as a former hospice nurse. It might be worth checking another hospice, if there is one in your area. Determining hospice eligibility is the job of the hospice medical director (a physician), and is not a black-and-white affair -- there are no...

Yes, Liz...thanks so much. I so empathize with the difficult decision-making -- so hard to confront the realities that sometimes the solutions that exist just won't work for certain individuals. But the VA option sounds really, really great -- of course there will be hurdles, and sometimes...

Oh, Lenore-- so sorry for the mother troubles on top of everything else! I also just went through a period of 6 months of mom failing, in-and-out of the ER and hospital. She's better now after they hit upon the right diagnosis. I guess none of us has any idea of how we do what we do, or how we...

So a little late with this update...I'm sure everyone on here will understand how that happens! We had a trial run of the BCV/Cuirass (Hayek medical) negative pressure ventilation system, so here's what we found: 1) Looks like a clear, hard plastic turtle shell that fits over the whole torso...

And will second Kim's opinion on the oxygen! ALS patients don't have trouble oxygenating because their lungs aren't working well (which is the main reason to use oxygen) -- they just can't get the air in. So not sure why oxygen would have been prescribed, unless he has another, pre-existing...

Hi, Liz! I also post infrequently, but this is a great forum for helping caregivers not feel crazy. So sorry for what you're going through! We have not considered skilled care at this point, but I face the resistance to adaptations (including hiring caregiving help) on a daily basis. He chokes...

Re: Compression boots, Grandma's "infinity scarf," and microwaveable slippers Glad it was helpful. We also find that it does double duty in helping keep legs warm!

Update on this: the RT who is a rep for the vendor (Hayek) will be in NYC next week, and is coming by so that we can try it out. Will post about the experience after...