feeding

  1. KES_SLP

    Seeking People Living with Amyotrophic Lateral Sclerosis (pALS) for Research Study on Preferences for Feeding Tube Placement

    Study Purpose: The purpose of the research is to better understand the beliefs, preferences, goals and concerns surrounding feeding tube placement of people living with ALS. Study Eligibility: You are eligible to participate in this study if you are over the age of 18 and have been diagnosed...
  2. M

    PALS opposed to feeding tube

    Hello, I haven’t posted in a while but my husband was diagnosed august of 2022 with limb-onset ALS. Even though he was diagnosed as limb-onset, it quickly moved into the bulbar region. His left arm/hand (where we thought it started) is now pretty much paralyzed but the main things that have...
  3. M

    What type of feeding tube will give me the most independence?

    My feeding tube will be 7 weeks old tomorrow, and I want to get it exchanged next week. Right now I have legacy 18 French with two ports. I have weak hands. What type of tube will give me the most independence in using it going forward? Enfit button, legacy button, enfit dangler, legacy...
  4. M

    Mini One Balloon feeding tube?

    Compassionate Care (which now covers the whole US) has a new doctor on board who told me that the Mini One Balloon feeding tube is hugely better than Mic Key. Opinions? Also, do I have to get the dangling tube as my first tube, which could be replaced later with button style? Oddly, when I...
  5. 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...
  6. 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...
  7. 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...
  8. 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...
  9. 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...
  10. 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...
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