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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 1 reply, 2 voices, and was last updated 2 months, 2 weeks ago by Halsey Blocher.

    • Author
      • #21247
        Alyssa Silva

        I feel like I’m chronically fatigued, but I swear daylight savings time brings my exhaustion to a whole new level. And, as a result, my body tends to suffer physically— ie. weaker voice, slower to chew and swallow, unable to use my hand/arm to type or use my wheelchair as well as I’d like to.

        I know we technically gained an hour, but with shorter days and my body’s internal clock not yet readjusted, I am struggling.

        Anyone else affected by this?

      • #21271
        Halsey Blocher

        This makes total sense! Something about the sun going down so early is just exhausting. I wouldn’t be at all surprised if the sadness caused by the lesser amount of light has a direct correlation to to how we physically feel.

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