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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.

  • This topic has 5 replies, 4 voices, and was last updated 1 year, 7 months ago by Adnan Hafizovic.

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      • #11694

        Children with SMA may experience problems with breathing and clearing their lungs of mucus. In these cases, they may need a cough assist machine—but what is it and how does it work? The machine has a mask that the patient puts over their mouth and nose, or can be used with a mouthpiece or tube attached to a tracheostomy tube.

        Find out more about this machine here: “How a Cough Assist Machine Works

        What are your thoughts on this? Have you ever tried or know someone who has tried one of these machines?

      • #11725
        DeAnn R
        Keymaster

        My first experience with cough assist was in a hospital setting.  Definitely scary at first, but worked like a charm.  All the time I have people say they wish they could cough for me when they hear my wimpy attempts.  This machine actually does.  The respiratory techs were surprised I didn’t have one at home.

        Within the last year I got my very own.  After fiddling with the settings and trying a mouthpiece I think I’ve got it where it will be most beneficial.  I’ve had to educate others on what it is and how to use it, but it’s not hard to do.

        • #11733
          Kevin Schaefer
          Keymaster

          I used to be very reluctant about using it, but once I forced myself to do it it helped me tremendously. It’s a bit tedious at first and it takes some time getting used to, but it’s an instrumental tool for combatting respiratory issues. Like DeAnn, I have trouble coughing on my own, and yeah this machine does all the work for you. If you can discipline yourself to do it a few times a day, you’ll definitely decrease your chances of pneumonia.

      • #11765
        Adnan Hafizovic
        Participant

        Is it cough machine same thing like nebulizer?

        • #11767
          DeAnn R
          Keymaster

          Adnan, cough assist is much different than a nebulizer.  Cough assist more pushes air in when you take a breath, then quickly pulls air out for the exhale if that makes sense.  When you cough with the exhale it gives the cough more oomph.  They work great in conjunction with each other for me when I’m sick.  I’ll do the nebulizer to loosen gunk, then cough assist to help get it out.

      • #11868
        Adnan Hafizovic
        Participant

        ok Deann thank

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