Search results

  1. D

    careaide height

    I’m impressed you’ve all found caregivers who are allowed to use a lift. I was all set with Home Instead to start coming in, then they called and rejected me because of my (new, state-of-the-art) ceiling lift. (We can’t fit a hoyer in out tiny apartment.) They consider me a two person assist...
  2. D

    Pain in Limbs

    I had limb onset, and have had sensory symptoms from the start. All brushed off by neurologists as not part of ALS. The feet can go from blue cold (no matter the weather) and then later feel burning hot and swollen. I’ve also had periods of months when a certain area will feel like I’ve...
  3. D

    Raising the white flag

    I haven’t been on the forum in awhile, and I’m so thankful I saw this in time to add my appreciation for all the help you’ve given to all of us. You have been an inspiration on many levels. I will miss seeing your thoughts and opinions on different topics, and thanks to the forum, your...
  4. D

    Butt Pillow

    Maybe this needs to be a new thread, I don’t know. But since we’re on the subject of alternating pressure mattresses, could folks please give opinions on which are good, which are not? I have been offered a good deal (I think) on a Hillrom Accumax VCP, but without a pump. The wording says...
  5. D

    Feeding Tube

    Thank you both for the info. I will probably move on to the button after hearing you both. Unknown change is sometimes scarier than just making do with what’s already there. I’m so glad to be able to hear the real info.
  6. D

    Feeding Tube

    Ok I get that for the procedure, but what about on a daily basis, every time you open the button, don’t you get an eruption directly from the stomach, or escaping gas or whatever?
  7. D

    Feeding Tube

    Thanks for that info Karen. I have to admit I’m fearful of that big bumper being pulled through that tiny hole. I’m glad to hear it wasn’t that bad. But what about having stomach contents coming out when you open the button? Sometimes my tube is full and gross right up to the clamp, and I...
  8. D

    Feeding Tube

    I’m glad things went smoothly for both. So many different experiences told about for the same basic procedure! I had mine placed June 22, had a bad reaction to morphine (scares me a bit for future needs), and ended up staying at the hospital for 3 days. The tube works very well, all healed...
  9. D

    Peg Monday, worried re transferring

    Hi forum, I am scheduled for a PEG Monday, and it suddenly occurred to me that getting me out of bed, and especially getting me onto the toilet, may be a real issue for a time while healing. I am still (just barely) able to get myself between bed and wheelchair with a sliding board, but for...
  10. D

    Can't get off the toilet independently-what now?

    Thanks again Christine, the information from both you and Doglady has made me feel very hopeful that the supra pubic catheter would be a big quality-of-life improver for me. I have talked to both my primary and a urologist about it. They are less than enthusiastic about it, because of the risk...
Top