bipap

  1. M

    Restless at Night

    My PALS was diagnosed in May 2017. He has ALS/FTD, feeding tube placed in May with continuous feed, Bipap starting in May at night, is all upper body and can still walk but will assistance. When he received the bipap he immediately adapted to it and slept twelve hours the first night. In fact...
  2. N

    Need help with Avap setting

    I got best friend in Russia with ALS 60 years old guy and send him Respironics Legacy Series BIPAP last year (thank you for advise from forum). They had doctor who recommended setting. Everything was great. Than recently doctor change settings (increased) and quit the job. My friend realize in...
  3. K

    Similar stories

    Hi everyone, thanks for taking the time to read. I posted a couple weeks ago about my mom who is progressing rapidly. She is continuing to progress after her diagnosis on August 24. Most of her words are not audible now and she is getting weaker with transfers from bed to chair etc and is...
  4. K

    A question about a new diagnosis

    I have been waiting for our official diagnosis from and ALS specialist/neurologist to post and we got it last Thursday so here I am. My mom was her normal awesome self in April this year. In May we noticed she was slurring her words and she had a couple of falls while cleaning the house. In...
  5. T

    Lateral rotation mattress

    Hi all, We are going to be getting a hospital bed soon. I am thinking about a lateral rotation air mattress. My husband doesn't have much use of his arms. I realize that Medicare or insurance probably won't pay. I have a medical condition that requires me to sleep through the night. We...
  6. KarenNWendyn

    Share your dreams

    I’ve always had an interest in hearing about people’s dreams. I’m talking about the ones people have during sleep. I actually did a thesis during medical school on dream interpretation. Last night I had one where I was walking around and realized I was wearing a BiPAP mask. Every time I...
  7. T

    Final stages

    Hi everyone. My sister is in her last days. Hospice started last Friday. She is now off her bipap. Her pulse today is 47. Did anyone have signs on how much longer we have with her? It's so frustrating that I can't seem to do anything for her anymore. Any advice would be great! Thank you.
  8. lgelb

    Arimoclomol trial now recruiting

    List of sites here Must be within 18 months of diagnosis, have an FRS of at least 35 and erect SVC% predicted equal to or above 80% at screening, and not use BiPAP more than 2 hours while awake. The trial recruitment page is not as clear as the NIH entry on those criteria.
  9. Doglady

    New-ish Diagnosis

    Hi- I’m new here and was diagnosed 4 months ago. My symptoms started a year earlier! Started with falls then foot drop. Also cramps and fasiculations. It was terrible at first but I’m adjusting now. My ALS clinic is great and the local ALS Association couldn’t be more helpful. I’m on Riluzole...
  10. L

    Biking again!

    My dear friend has been in ICU for roughly two months as we negotiate all the issues with finding care and housing for him, but we are almost there. He has been understandably depressed, but hesitant to try new things to help improve his mood. He has lost the ability to use his hands and lower...
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