lung capacity

  1. J

    Brainstorm Nurown 'Right to Try' participant shares progress

    As some of you may know, Brainstorm granted one PALS free access to NurOwn as a 'thank you' for the work he did on Right to Try. He is not in a trial but is being given the course separately. His update is on Facebook -- matt.bellinski.7 Mod note -- not linking directly due to fundraising...
  2. K

    Nasal Congestion

    My PALS experiences random bouts of severe nasal congestion. He takes an antihistamine but no decongestant. When this occurs, it is difficult for him to use the Trilogy because it is easier to use when breathing through his nose than his mouth. It is also difficult to blow his nose due to the...
  3. A

    I don't know what this is...

    Hi, Maybe I'm being hypersensitive to everything that's going on in my body - maybe I'm just getting "old" (I just turned 32) and don't know how my body is supposed to feel. I was running pretty well the last few months, training for my half marathon. I sprained my ankle and took about 2...
  4. R

    Do they re evaluate lung capacity to renew Radicava?

    I know to be on Radicava required 80%... I am on 5th month of infusion and lung power has gone down... Will they kick me off?
  5. L

    lung capacity

    Lungs are going down fast. Is here anything that can be done to strengthen the diaphragm or increase lung capacity or slow the loss of capacity/function? I was told not to exercise on a powerlung as that would cause muscles to weaken further.
  6. R

    Should I get feeding tube now?

    My ALS doctor and others with ALS recommend getting feeding tube while I am still healthy. I was orignaly against it, but am now considering. I have now problem eating now (I weigh 285) and still have 85% lung capacity. What is your opinion? They said it doesn't have to be used until...
  7. K

    Breathing challenge

    Starting to have episodes where I want to inhale but the muscles aren't responding. I still have about 40 percent lung capacity and use the AVAP all night and several hours during the day but even when it tries to force a breath, my lungs don't always respond. I suspect the end draws near.
  8. W

    April 2017 Diagnosed

    Greetings, First I want to say “thank you” to all of you past and present that have posted on this forum. Although I’ve only been a member for a few months now, the information and encouragement you all have provided has helped. Was diagnosed April 15, 2017 with ALS. The below is the story...
  9. M

    Can't swallow food anymore

    This disease is heartbreaking...This past Friday was the last day my dad was able to swallow whole food. It was very rough for him and my mom Saturday accepting the fact that he lost something else. This disease is showing no mercy on him!!! He had trouble breathing last night due to excessive...
  10. C

    Who knows best??

    My father was diagnosed last month and we had our first visit to the MDA clinic. Here we found out that his lung capacity is sitting at 48%. He is in desperate need of a peg tube which hopefully will be done in the next week. Meanwhile, he is beginning to not eat and sleeps all the time.... I...