peg

  1. E

    I hate this

    I hesitate writing this post but I need to get it out, it's eating me up inside. Tom had his ALS clinic appointment Thursday, his breathing tests were so low. Lung capacity 20%, FVC 21%, aspiration was the highest at 29%. Last visit five months ago all were in the 40s and 50's. And before...
  2. gooseberry

    so much equipment

    Initially it didn't seem like much, a bipap here, a peg tube there. Today a physical therapist did a home eval and based on what he saw recommended ramps, hospital bed, new flooring, new manual and power wheelchair, lift for van, new trilogy and cough assist machine, commode chairs, shower...
  3. Grumpy'sWife

    Just a quick Update

    Hi everyone. It has been awhile since I have been on but wanted to give you a quick update on my Grumpy. There have been so many changes since the first of December when I was here last. Grumpy (Randy) has only movement on 3 fingers of his right hand now. He is totally reliant on the Trilogy...
    • Grumpy'sWife
    • Thread
    • angry breathing communication fingers hospice love movement muscle peg trilogy update wanted
    • Replies: 30
    • Forum: Current caregivers
  4. smoochiegal

    New day, New problems. :(

    Hi all, My husband could not eat his dinner tonight, he could not get that damned spoon to his mouth. He tried, and tried, and tried. And got frustrated, frustrated and yup, you guessed it, more frustrated. He said months ago 'when I can't feed myself anymore, no one is going to to do it for...
  5. N

    new peg tubes

    I received a letter from Wahlgrens infusion services today saying that all peg tubes will be replaced with new ones this year, starting in July. Has anyone else gotten this letter. ait looks like they are forcing people to have surgery which is both dangerous for people who cant breathe well...
  6. L

    Family not getting needed help for mom with bulbar ALS/FTD

    Hi all, This is my first time posting and I'm glad there's a supportive community here. I'm posting because my mother has Bulbar ALS with FTD. She was diagnosed approx 2 years ago and as of now, cannot eat (has a PEG) right hand almost useless, left hand getting there, extremely slurred speech...
    • lastdaughter
    • Thread
    • advice als bipap brother bulbar bulbar als caregiver caregivers chair cough assist coughing cry diagnosed family father frustrated ftd hours money peg problem shower chair slurred speech speech suction
    • Replies: 14
    • Forum: General discussion about ALS/MND
  7. P

    What to expect from here?

    Hi everyone. It has been a little over two years since I posted which is had enough to believe. Dad was diagnosed a bit over two years ago with bulbar onset MND. He seemed to remain quite well for a long period. His speech disappeared completely reasonably fast but he was still mobile walking...
  8. J

    PEG Stopped up Again

    Saturday night right before the seattle Panther game I was getting my vitamins and the tube just stopped up, we taped it down to keep it from coming out and the nurse had to come out today and put another one in, I have to find liquid vitamins, especially calcium, it seems to be the one that...
  9. E

    PEG tube replacement

    This may sound crazy but my husband will be getting his seventh PEG tube replacement tomorrow. He had a tube initially put in at Duke (Nov 2012) and I think it was supposed to stay in, as in forever. But Mayo in Jan 2014 suggested it was getting old (it did look nasty) and they replaced it...
  10. N

    Last Hope gone

    Ive been to the Houston clinic twice, in October and two days ago. During that time, my breathing has deteriorated rapidly and they found denervation this last time in all my limbs and trunk. The first time in October I was told there was a small chance I might not have ALS, because they didnt...
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