lgelb

lgelb

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  • zoohouse
    Thank you for replying so quickly. I am embarrassed to admit that I know very little about his BiPap setting, as ALS was not on the radar when he got it. Tim saw our hospitals respiratory tech last week while I was at work, and he changed the settings a bit to 14/8 if that means anything to you. It is a ResMed S9, without a humidifier. Tim does not have any problems with excess secretion, or swallowing. I think one of the problems is that his abdomen has become quite large (I am succeeding in keeping his weight on) and he has no trunk strength so he is slouched quite a bit. He is most SOB when leaning forward to brush his teeth, or reposition in his chair.
    We would love to meet with you, as I have not actually met anyone else in person with this struggle.
    zoohouse
    Hello, I am caring for my husband with ALS, and noted that you live in Seattle. I bring Tim to the Seattle VA hospital often. Seattle is a beautiful city, have been to the botanical gardens a couple of times. You obviously have some knowledge about vent, bipap, NIV etc. Tim's breathing has been decreasing inspire of having no difficulty speaking or swallowing. He has been on bipap for the last year at night, but he is now using accessory muscles to breath during the day. We are heading to Seattle Sunday night for pulmonary testing, and to find out some options for him. Any suggestions?
    Katie C
    Laurie... Thank you for your kind words. Over the years I've realized there are and will be certain forum members that I just probably wouldn't like very much even in the best of circumstances if I met them in real life and.. well, I guess that's ok. But it really felt good to have someone care enough to back up what I'd said! So again.. thank you.

    Katie
    indigosd
    lgelb, I see that you have been a member for quite some time and not had a friend request or a Welcome to the forum on your wall. I think that sometimes we get so wrapped up in our own lives that we often forget to hug our new members and welcome them. Consider yourself well hugged this morning! I sent you a friend request! You gave such great advice on the BiPAP thread. Thank you. How are you and your hubby doing today? hugs, Kay Marie
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