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  1. K

    Kathy's mom

    We were never able to get to clinic to get things checked out: she was really weak, and they offered to send a respiratory therapist to her home, so we didn't need to go. They eventually recommended Ativan, sublingual, but we didn't have a chance to use it often. She was mostly able to relax...
  2. K

    BiPap: Possible to Have Too Much Air?

    My 87 year old mother just got her BiPap machine four days ago. Therapist set it up for her, and the rental unit relays info by wifi to the therapist's office, and he can control it remotely. She felt like it was blowing air too harshly into her lungs over the weekend, and I asked him to dial...
  3. K

    Trouble with Sentry 1400 Low Air Loss/ Alternating Air Mattress

    Hi all, hoping someone can help with our problems with the alternating air mattress. Just had this delivered from the ALS closet on Thursday. First two nights, she finally slept till 5am, instead of 2am. That was good. Last night she slept badly. But the rest of it is a disaster. She is so...
  4. K

    Laryngospasm, Suddenly Can't Breath: Information Videos/ Straw Breathing Technique

    Hello all, After a hairy morning of my mother's sudden and repeated laryngospasms, I found these two short videos online, which explains the causes, and a technique to deal with it and how that works. "Just" relaxing helped, however, I'm looking forward to introducing straw breathing technique...
  5. K

    Why We're Here...

    Hi all, Just wanted to underline how grateful I am for this forum. This morning, Mum had her first really rattling experience with trouble breathing, a series of spasms that wouldn't allow her to get her breath. Because of how PALS and CALS share their experiences here, and I've been reading...
  6. K

    Sliding Sheets? How to Use, How to Move my PAL with One Person

    Hello all, yet another of my basic questions, can't seem to get research online for this, or by searching on sliding sheet or slider sheet on this forum! How do I use a sliding sheet? I've been currently going to the head of the bed, grasping the soaker pad while wrapping it close to her...
  7. K

    Swallowing Air, but Can't Burp

    Hello, all, hope you can help with yet another issue: combed the threads, and don't see anything on this. My 87-year old mother, limb onset, is having a lot of bulbar symptoms now. They've really worsened over the last few weeks. She makes these tiny "mphhh, mphh, mphhh" noises after she...
  8. K

    Grief/ Crying/ Can't Breathe

    Sadly, my sister passed away last week, and the family is gutted. She was a bright light, and we miss her terribly. My 87 year old Mum is grieving hard. Yesterday she was crying with full abandon, and suddenly felt she couldn't breathe. I've read here before that PALS can have spasms, and...
  9. K

    PALs Losing Tastebuds?

    Hello, all, Anyone else have the experience of their PAL losing their sense of taste? Today I asked my mother how she liked the new seedless jam I got her. She said she had no idea. She can't taste most of her food. She did not have bulbar onset, but she is starting to have more bulbar...
  10. K

    Nitty Gritty: Commode and Water Cleaning Question

    Hello all, Sorry for the many posts lately. I blame all the nice help I've been getting. Does anyone have a suggestion of how to use a water hose or spigot, or something ______________ that would allow my PAL to *not* use a reacher stick, or wipe with her hand and toilet paper? She has...
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