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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 2 replies, 2 voices, and was last updated 4 weeks ago by DeAnn R.

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      • #21293
        DeAnn R
        Keymaster

        Hey everyone! Hope you all had a great weekend.

        Check out the latest episode of Dose of DeAnn here. This one’s a bit long, but it’s well worth your time. I interviewed Andrea Klein, founder of Breathe With MDThis is an advocacy organization that helps make people living with MD, and doctors, aware of respiratory issues.

        Andrea started this organization after her sister died from respiratory complications. We talked about the history of Breathe With MD, tips for getting through cold and flu season, supplemental oxygen, and more.

        This was an educational conversation for me, and I hope you all enjoy it too!

        Do you have any questions for Andrea? Do you have any takeaways from this video?

      • #21309
        Kelly Miller
        Participant

        Thanks DeAnn for putting this video on here. BreathewithMD.org is a fantastic reference for materials that help with doctors & hospitals when it comes to the respiratory issues we all have at one time or another. I had been dealing with pneumonias & many bouts of bronchitis throughout the yrs. without even knowing about the supplemental oxygen thing. I can’t even tell you how many times the cannula were put in my nose as I lay in a hospital bed gasping for air. I wish I had known way back that that was NOT the way to do it. Fortunately for me during my last big illness with pneumonia in 2014, the doctors chose the right path of BiPAP as they were pulling out their hair regarding what to do. Since then, I have educated myself & my husband as to the protocol, and he’s ready to fight with anyone who won’t do it right when I’m out of it from not being able to breathe!

        • #21334
          DeAnn R
          Keymaster

          Thanks Kelly! So many doctors are really clueless as to how to help in our situations. Unfortunately it’s up to us to know. That’s precisely why I wanted to do this interview.

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