bipap

  1. I

    Facial muscles

    I was diagnosed with progressive Bulbar Palsy I. January 2018. Although I could no longer swallow or speak by April of 2018, a PEG. helped and things were ok until Christmas of 2018. My limbs are weakening but I’m making the best of that. My biggest worry is my eyes. Even after sleeping well...
  2. V

    First ALS Clinic Visit

    Yesterday we had our first ALS Clinic visit. I think my PALS was overwhelmed by all of the people. He says he is very tired. He was diagnosed 3 1/2 years ago but was pretty much on a plateau until about 2 months ago when he seems to have fallen off a cliff. For the first 3 years his left...
  3. D

    Trilogy in Hospice??

    I recall seeing a couple of posts saying hospice is not a possibility if one is on a BiPAP or CPAP. Is that correct.
  4. worrieddaughter77

    My dad is still kicking, but recently got the flu.

    Hello, Sorry I've been away from the forum for a long time. Two teenagers, one baby, and full time care of my dad (shared with my mom) was tough.. And then... We decided to move from the USA to Finland. It was my husband's idea actually... He dragged us in June 2018 because he thought we could...
  5. Vincent

    Nose bleeds.

    While this is usually used in reference to where I sit at ball games, I have issues with my nose bleeding or there is blood when I blow my nose. I use a bipap at night and more during the day. Yes I have a humidifier attached to the bipap. Is this just a thing that goes with bipap or has someone...
  6. Kristina1

    spastic gait, walking on forefoot/toes

    The main reason I use a walker at home, wheelchair out is my spastic gait makes walking very difficult and a huge fall risk. My spasticity is such that I can't put my heels down when I walk, I walk on the front of my feet, almost on my toes, and put my weight on the outer sides of my feet. At...
  7. 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...
  8. I

    Drugs and PT for PBP?

    I was diagnosed with PBP a year ago this week. I frequently check in and read most of the posts for the day. It just dawned on my husband and I that none of the four neurologists I have seen have mentioned physical therapy or drugs that might delay the progression of this beast. Until about...
  9. 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...
  10. J

    muscle weakness, twitching, cramping and fatigue... ALS?

    Hi Everyone, I am wondering if any of this sounds familiar.. 38 y/o female. Previously VERY active, trail running, mountain biking, more energy than I knew what to do with. Weekends, you could find me hiking (10+ hours, overnight hikes with a full pack), alpine mountain biking (4+ hours), and...
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