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  1. K

    Heavenly Healing

    On May 30th, my PALS received the answer to his prayers for quick, heavenly healing. He began experiencing symptoms in August of 2017, was diagnosed in January of 2018, and after 7 weeks of hospiice, was released from this horrible disease. We always assumed his battle would be short because his...
  2. K

    Thoughts on When to Get Hospice

    My PALS and I have decided to use hospice when the time is right. He uses a Trilogy about 17 hours a day, does not want to be trached or have a PEG. He is able to eat whatever he wants (with the help of water to wash it down), he transfers from scooter to chair/commode but anything he does is...
  3. K

    Trilogy Settings with Progression

    My PALS has been using a Trilogy for the past year. His latest FVC was 26%, with MIP at 20 and MEP at 32. We can tell his weakening muscles continue to affect his breathing, just since Clinic in February. He had some issues with air hunger at night and increasing EPAP from 6 to 8 took care of...
  4. K

    Protecting Against Heel Sores

    My PALS is beginning to feel some sensitivity on his heels due to being in bed longer at night and trying to keep his feet up during the day. I thought about rolling up a towel really tight and placing it under his ankles at night or using a roll pillow. I also know there are boots but wondered...
  5. K

    Air Hunger When Laying on Left Side

    My PALS is on Trilogy for about 12 hours at night and another 4 during the day. On two occasions, he has had difficulty breathing on his left side at night while on the machine. The first time it took about 30 minutes of sitting up to recover but last night it was longer. Our RT recommended...
  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. K

    Nasal Congestion

    My PALS experiences random bouts of severe nasal congestion. He takes an antihistamine but no decongestant. When this occurs, it is difficult for him to use the Trilogy because it is easier to use when breathing through his nose than his mouth. It is also difficult to blow his nose due to the...
  8. K

    Flu Shot

    Hello everyone! This is my first post since my husband was diagnosed with ALS in January 2018. I have read many threads and your posts have been so helpful. I have a question about flu shots. My husband is only 59 but realized yesterday that there are "stronger" flu shots for people over 65...
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