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  1. ReginaS

    aspirate -

    PALS cannot drink liquids that are too thin and ensure (plus) is somehow too thick and bothers him. He drinks mostly liquids (and occasionally eats some cheese) but yesterday he wanted to try sole (fish). First bite was ok - 2nd bite was very difficult. He coughed and tried to get it out...
  2. ReginaS

    breathing difficulties

    Hi all, My PALS describes that he has the feeling that the air passages in his head (above throat) are not staying open but collapse or close when his head is in certain positions. Do you know what is happening? He is uncomfortable lying down, elevated lying on one side is OK - on the other...
  3. chally

    Dry eye

    Does anyone have this issue? The perfect storm of atropine (mucus) Benadryl (sleep) our heating system, learning how to stay hydrated with feeding tube plus slight air leak of my trilogy mask going right to my eyes. Another sh*t storm side adventure to the nightmare. I use lots of eye drops...
  4. 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...
  5. 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...
  6. 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...
  7. 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...
  8. 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...
  9. 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...
  10. 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...

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