feeding tube

  1. 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...
  2. 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...
  3. 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...
  4. 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...
  5. A

    My mother’s diagnosis

    Hello to all, As I’m sure everyone here can understand, I never thought I would need to post on this forum. My only knowledge of ALS was through the ice bucket challenge! My 70 year old mother was diagnosed with ALS at the beginning of August this year. I first noticed something wasn’t quite...
  6. M

    Restless at Night

    My PALS was diagnosed in May 2017. He has ALS/FTD, feeding tube placed in May with continuous feed, Bipap starting in May at night, is all upper body and can still walk but will assistance. When he received the bipap he immediately adapted to it and slept twelve hours the first night. In fact...
  7. K

    Similar stories

    Hi everyone, thanks for taking the time to read. I posted a couple weeks ago about my mom who is progressing rapidly. She is continuing to progress after her diagnosis on August 24. Most of her words are not audible now and she is getting weaker with transfers from bed to chair etc and is...
  8. A

    my journey winding down

    now that the end approaches thought I'd share a few things,. This group has provided the best support. My five years have been filled with joy I never thought possible. I give credit to my attitude of not letting this beast get hold of my heart and soul. Also for my determination to follow...
  9. N

    PEG tube > now I can't control my bowels?!

    hello, I have had a feeding tube now for about a week. I am strictly on the formula diet (i haven't tried pureeing Foods yet) and I haven't been able to control my bowels,. Everyday, sometimes twice a day I'm having accidents. Is this how it is going to be from now on? I feel trapped now like I...
  10. T

    Question about life if a cure is ever found.

    It's been a while since I have checked in. Life for my son and myself, as caregivers, is almost unbearable. My PALS is totally paralyzed from neck down. He has a feeding tube and is on a ventilator. He seems a little more depressed lately. Still doesn't sleep well at night so my son and I...
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