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How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


This topic has 6 replies, 5 voices, and was last updated 1 year, 4 months ago by Adnan Hafizovic.

  • Author
    Posts
    • #17966
      Ryan Berhar
      Member

      I’m still fighting off pneumonia. To treat it, I did treatment cycles every four hours of Albuterol nebs, the Vest machine, postural drainage, and the cough machine. Doing the treatments in this order seems to work best, as it breaks stuff up and then gets rid of it. Do you guys have the same system? Or do you have other machines, methods etcetera?

    • #17968
      Halsey Blocher
      Participant

      That’s pretty much what I do except I use the nebulizer and vest at the same time, and I use xoponex (which I probably spelled wrong) instead of albuterol. Albuterol tends to make my heart race.

    • #17970
      DeAnn R
      Keymaster

      Sounds like you’re doing everything right. Pneumonia is a bugger to recover from. Just keep at it.

    • #18003
      Kelly Miller
      Participant

      Oh no, Ryan I hope you get better very soon! In the past, all I’ve used has been the nebulizer with albuterol, chest percussion by my husband, & assistance coughing by his pushing my diaphragm. Recently I got a cough assist machine which I will use next time I get sick.

      Ryan, have you heard of taking liquid albuterol on a daily basis? I started doing it last summer, and I feel way better in my breathing. I can breathe deeper, and it’s not so hard to cough if I need to. If you haven’t tried it will, give the idea some thought & talk to your pulmonologist. Mine had never heard of it being used on a regular basis & never heard that it did anything for anyone, but she was willing to let me try. She’s not sure it isn’t in my head, but she says whatever works is fine with her!

      • #18009
        Ryan Berhar
        Member

        Thanks. That’s interesting. I’ll look into it.

    • #18013
      Adnan Hafizovic
      Participant

      I’m lucky I was suffering from pneumonia only twice in my life when I was a child. Although this winter I had twice a slight throat inflammation, but it’s nothing compared to pneumonia, which takes the lives of many people with SMA.

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