lgelb

lgelb

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  • B
    Thank you Igel and also Shiftkicker for giving me a reality check on my health anxiety due to frequent fasciculations, you guys doing gods work listening to people’s stories and helping them out.

    I am sorry for making you respond to me again, have a wonderful day.
    Srif
    Hello! Thank you for replying to my post. My neurologist told me The EMG readings and blood tests are not myositis and I will repeat the EMG. That is why I posted because he suspects something else. The dr who did the EMG wrongfully assumed myositis. I wouldn’t be worried if that’s what I had ofcourse!
    R
    Having trouble adjusting to adequate settings on my mom's bipap. We're finding most RTs are just not familiar with settings for ALS. I have adjusted to the following, and she says she is now more comfortable. She is on her bipap almost 24/7.

    Target Rate 10
    Target Va 3.5
    EPAP 4
    MinPs 2
    Max Ps 12
    Ti Max 4 sec
    Ti min 4 sec
    RT 400 ms
    Trig Med
    Hum 3

    How will this need to be changed as she further declines? Thank you!
    Jhettinger
    Having anxiety attacks trying to put on BPAP mask . i am 8 yrs from dx. i used to scuba . what do people with ALS take ? also have anxiety attacks when I overheat. thanks your the best
    cbus20
    hi, I have scoured many of your posts regarding sleeping position. I'm currently in a battle to figure out how to relieve some soreness (not skin sores) as I sleep. I was wondering if you could help me navigate getting some equipment and trial and error with this issue? Any help is much appreciated!
    P
    Hi Laurie, tx for your help on my thread. As an update, my dad's Trilogy machine has now been replaced with another machine: Oricare V8600. Ever since he has been shifted to this new machine, he isn't feeling comfortable breathing even with the same settings. Idk how to PM, this is the closest I could get to PMing you. Please let me know if I should share the current settings here with other details re my father?
    P
    Pooja Dhamor
    As an update, basis what you taught me on my thread, I increased his breath rate from 16 per minute to 18 pm. He is feeling better. In hindsight, I feel stupid for panicking.
    B
    Hi. I’m sorry to bother. You commented on my recent post regarding mri findings and I saw it was deleted. I highly respect your opinion on things.. I apologize to cause any offense or annoyance, but I was curious on what your thoughts on my mri were.
    S
    Hi Laurie,
    I'm working on setting my own bipap up, my question concerns the inspiration pressure versus expiration pressure and the collapse of my airway during the inhale. Any lower than 8.5 on the exhalation pressure and my airway collapses and I have to open my mouth, is there something I'm missing? I am currently set at 8.5 epap/12 ipap. Older system one respironics unit
    Steve
    K
    HI Laurie

    My Mom is on a Trilogy machine and is having issues with breathing with it. Can you PM me with help with her settings?
    Thank you! :)
    A
    Hi Laurie,
    I'm looking for a ventilator vs BiPAP machine for my sister which do you think is the way to go keeping in mind few points :
    -She will never be trached
    -We will get it out of our pocket
    -She rarely if ever leaves the home.
    If your answer is BiPAP machine which specific one you recommend ? I mean what is the best out there regardless of the money factor ?Thanks
    katonthesun
    Hey, Laurie. Thanks for replying to my post. I feel a lot better now after reading. I guess I do have anxiety. Going to see a therapist/doctor about it soon. I wish you the absolute best. You’re really amazing. Thank you again for helping me calm my anxiousness.
    O
    Hey I don't know to respond to conversations on this website. I'm knew and he hasn't full got diagnosed as the doctor is making us wait over 2 months for a specific ALS doctor
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