feeding tube

  1. I

    Changing out G tube

    I have an appointment at UCSF on Friday to change our the feeding tube since it is bleeding little at the stoma. I have not had a single day of a problem with the feeding. They set this at 1:00 and I was to see the neurologist at the ALS clinic right after. Got a call this morning from...
  2. K

    Also...Slow or Fast Progression?

    Karen, I must admit I am wondering the same thing...slow, fast, average? I know today is a gift, we should live each day and day by day, but my wondering has to do with decisions that need to be made. My PALS was diagnosed in January 2018 with symptoms becoming very noticeable in August 2017...
  3. T

    Getting Help, Caregivers

    We have a mix of ways that we have help. I thought I'd share them. I'd also be interested in hearing your ideas. For reference, my Dad is mostly immobile now, (diagnosed the end of 2018.) All transfers are with a Hoyer lift. He does get transferred to a commode or his PWC, (mostly if we're...
  4. I

    Minor bleeding at tube site. Normal?

    I had my feeding tube put in in April of last year. My ALS is bulbar and I no longer can take anything by mouth. Several weeks ago I noticed that there was blood at the opening. It is not a lot, but there appears to be a little blister or skin tab protruding from the opening. I am now...
  5. B

    MIL Diagnosed

    My MIL started showing symptoms in June 2018. It started with back pain and slurred speech and progressed from there. In August she needed a cane to walk, and by September a walker. We had began seeking answers from her PCP and a Neurologist who couldn't give us any answers. The only thing...
  6. N

    cold or flu with ALS is terrible!

    this is the second time this year I've been down and out. The worst part is the breathing is extremely strained. that is nothing new and I have never used bipap or trilogy. I'm getting antibiotics tonight and so far my regimen is Musinex, breathing treatments with the mask and smoke stuff...
  7. Chincoteaguer

    Back home from hospital

    I apologize for the length of this post but I hope it might help others who have to take their PALS to the ER. We were in the hospital from Thursday morning until noon on Saturday. As I have posted previously the trip to the ER was recommended by our health care nurse based on a false oxygen...
  8. B

    Constant use of Bipap machine

    Hi Everyone, Haven’t posted in about a year. My father was diagnosed approx 18 months ago with ALS and he is in the final stages. He has trouble holding up his head, can barely walk on his own, not eating anymore on his own and getting all his nutrients from a feeding tube. Just this week his...
  9. A

    Nuedexta and radicava

    My mother found out that she’ll be able to start radicava soon and Medicare is going to cover the entire cost! She also had a feeding tube put in last week at Mass General and it went well. She can still eat relatively normally but gets tired after a while and has lost a little weight. She...
  10. H

    Help on Trach

    Hi , my name is Jennifer and my mom is diagnosed as ALS last year(8/2017). Recently, her pulmonary doctor recommended my mom for the trach due to using 24 hours of trilogy. i am also researching about it but couldnt find the answer or opinion that that my mom has after she gets trach (Note: She...
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