Recent content by nona

  1. nona

    sh** is getting real

    I have spent most of the last week saying goodbye in person and in writing. It is surreal to say goodbye and mean it. When I entered hospice at the end of last year, I knew I had some time left to see friends and share experiences. This time, it's for real. This is not a drill. My close college...
  2. nona

    Starting BiPaP

    I started the bipap at night the summer after my diagnosis, and six years later I'm still only using it at night. I worked for two years after diagnosis ; the bipap helped me get restful sleep.
  3. nona

    PALS ROLL CALL NEW THREAD (PALS ONLY) [Wednesday or whenever]

    "my CALS is good about feeding me when needed" made me chuckle.
  4. nona

    Hoyer pep talk?

    Bill, I can't speak to the sizing, but check ebay.
  5. nona

    PALS ROLL CALL NEW THREAD (PALS ONLY) [Wednesday or whenever]

    Ah, Kevin, you and your damn sixth sense. I'm not ok. I mean, I'm in a good place emotionally, but physically I'm drained. I have gone back on hospice, this time with Bayada and already I know I'm in better hands. We have a plan for the next few weeks. The UTIs and antibiotics took a lot out of...
  6. nona

    Breathing Differences

    I had a very similar post a while ago. I was told it's the inevitable Buddha belly that happens when our ab muscles weaken.
  7. nona

    SupraPubic Catheter

    I sure wish I hadn't waited so long. These UTIs and antibiotics are brutal.
  8. nona

    anxiety, quick progression and Sjogren Syndromes

    I also question the advice to postpone non-invasive ventilation. Lung function tests should be able to discern functional need vs anxiety induced.
  9. nona

    anxiety, quick progression and Sjogren Syndromes

    Laurie, could her dry mouth also be med-related (or anxiety) and not Sjogren's?
  10. nona

    SupraPubic Catheter

    I have a consult for the same in three weeks. I was reluctant to have surgery but after seven rounds of antibiotics in five months, I can't wait to ditch this foley catheter. The person I remember having it was doglady. I know she had UTIs afterwards but she still souded happy with it.
  11. nona

    anxiety, quick progression and Sjogren Syndromes

    Is your mom being seen by a neurologist with expertise in ALS or MND? Because it doesn't sound like it.
  12. nona

    Transfer disk

    I love my transfer disc (aka, the pivot, pivitor, spinny thingy, or Susan). I think we've been using it for almost a year. Make sure you get one with grips or nonstick surfaces on both sides.
  13. nona

    ALS diagnosis after neck surgery

    there are full masks that don't have to go over the bridge of her nose. The Amara View is one that worked for me for awhile. I have rotated masks quite a bit. I currently have a Foley catheter. I hate it and have had near constant UTIs. But I don't know what alternative there is other than...
  14. nona

    Any tube diets that you can try prior to PEG?

    Kate Farms makes a good chocolate and vanilla formula that has fewer calories than the tube version but is fairly close in content. I used to drink it quite a bit and use it as a base for smoothies.
  15. nona

    Eagles Joe Walsh dedicated this...

    One of my favorite childhood songs...
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