feeding

  1. T

    Where to Go From Here

    Hello. My husband was diagnosed ALS May 24, 2018 at age 43. It all began in April 2017 when he began having difficulty clipping his nails, left hand onset first. From there it was over a year of testing, specialist, etc, which is the only normal thing I guess about this disease; difficult to...
  2. 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...
  3. 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...
  4. 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...
  5. 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...
  6. T

    So much air!

    My Dad got his tube in early December. We've tried both gravity and now pump feeding. He is just not comfortable. He can't get down more than 3 cans a day without being miserable. We've tried the first 1.5 calorie formula, a higher 2.0 calorie formula, and a 1.5 with lower fiber. We are...
  7. 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...
  8. Chincoteaguer

    Sleeping and tube feeding

    Sibyl has been sleeping a lot these past few days and definetly losing her concentration - she picks up her white board and magic marker and then just lays them on her stomach, etc. I have been letting her sleep thru her feeding times and when she does wake up she will only let me feed her...
  9. B

    Unconscious after oxygen drop?

    My sister (diagnosed 7 years ago, bedridden, tube fed, ventilated, communication system) had an oxygen drop a couple of days ago. Doctors said there may have been irreversible damage. She has not responded to stimulation since. The fever has gone down just today. Her medical care directive...
  10. 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...
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