feeding

  1. 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...
  2. 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...
  3. 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...
  4. 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...
  5. M

    Should I be concerned?

    Hi everyone - I am seeing my primary care doctor tomorrow but wanted to get your opinion on my situation seeing as you have so much experience in this area. My uncle passed away in Spring 2017 from ALS (he was late 60s) and my dad was just diagnosed with ALS (he is 74). I'm considering getting...
  6. 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...
  7. 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...
  8. M

    Reflux or what?

    The last week or so my PALS would have some coughing after finishing a gravity tube feeding. It seemed as if some formula was coming up by reflux and causing him to cough. It was brief and would resolve. I made sure he was at 45 degrees at least while receiving a feeding and for 45 minutes...
  9. B

    PEG (Feeding system)

    I have now been advised to have a PEG port placed in my stomach since my breathing has taken a turn for the worse. I can still eat and drink, but I was told my FVC was now down to 50% so it's time to do this procedure before my breathing becomes even more compromised. The procedure would be done...
  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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