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  1. K

    Hospital bed or not?

    Hi All, What is the benefit of a hospital bed over an adjustable bed? My husband has decided he does not want to do a trach. He currently is thinking about a PEG, but doesn’t “need” it yet. His upper body is where the ALS has presented first, which means his breathing is declining...
  2. K

    Anthony William - real or quack?

    Hi All, I’ve posted a couple of times and truly appreciate the quick, relevant, well thought out feedback I’ve been given. I also read a lot of your posts, and as much as it breaks my heart to see so many suffering, I find strength in your strength and courage. My husband was diagnosed with...
  3. K

    Breathing decline and discussion of vent …

    My pALS was diagnosed August 31, 2020. In October 2020, he was at 95%. December 2020, 88%. February 2021, 79%. In May 2021, his PFT was 64%. Last week, he was at 47%. All that to say, this is progressing so so fast. He doesn’t feel like he’s short of breath, but he did a sleep study after...
  4. K

    What happens to my pALS if something happens to me?

    Hi - as we are navigating this disease and its progression, I’m starting to worry about how does my husband get help if something happens to me. Last night, he slid to the floor as we tried to get him into bed (his upper body has almost no function, but his legs have been fairly strong). I...
  5. K

    Travel to friend’s house

    I see a lot of threads about travel, but what happens when we get there? Our friends built a fantastic new house, but every bedroom/full bathroom is upstairs. My husband is still mobile, but stairs are difficult/dangerous and by July, when we would go, his mobility will likely be even less...
  6. K

    New PALS

    Hi All, This is my first post. My husband just received confirmation of the ALS diagnosis on August 31. As all of you know, it’s overwhelming and so much to process and so much to do. We already have friends sending us articles and advice on nutrition and possible Chinese Herbal treatments...
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