1. 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...
  2. 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...
  3. 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...
  4. C

    BiPAP or CPAP??

    My Dad goes to his sleep clinic appt tomorrow and I wanted to get some insight and advice from other PALS before. He did an over night sleep test last week and found out that he has sleep apnea. Tomorrow he goes to pick up a machine from Mainland Sleep. The sleep technician said he should...
  5. 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...
  6. Vincent


    I had a rather strange episode last night, I was sleeping in my recliner last night and woke up choking(not fun with a bipap on). I have had reflux for years, however I either burped or had one episode of reverse peristalsis. Not really worrisome except I aspirated stomach contents ( vomit ). My...
  7. N

    02 or no 02?!

    my PALS this morning is struggling to breathe, 02 sats are bouncing around 81-88 all morning and he looks uncomfortable. Gave him an Ativan and morphine but doesn't seem to be making him comfortable. I wouldn't say agitated, just uncomfortable. The RT is suggesting some 02 for comfort and I'm...
  8. NothingButLove

    ResMed AirFit F20 Small Mask for CPAP/BiPAP/Trilogy

    ResMed AirFit F20 Full Face Small Mask for CPAP/BiPAP/Trilogy This is a used mask and was worn for 2 months. $16 shipped to the US. Rob
  9. L

    For Sale: Tobii I-12, ResMed AirCurve, Hill-Rom Cough Assist

    I’m selling my dad’s equipment at a good price and will donate the money to our local hospice center. Buy it all or separately. 1. Tobii Dynavox with eye tracking and Windows 10. Comes with Connect It floor mount AND wheelchair mount. Mounts never used; Tobii only used during initial demo...
  10. Kristina1

    where do you store trilogy on permobil pwc?

    I don't use bipap during the day, but looking to the future, I noticed the permobil PWC loaner I have has no storage place where you could put the trilogy if you were using it in the wheelchair. I'm told the PWC they are ordering for me through insurance will be similar to this one. So once...