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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 3 replies, 3 voices, and was last updated 6 months, 1 week ago by Ryan Berhar.

    • Author
      • #19180
        Kevin Schaefer

        Howdy everyone! Hope you all had a great weekend.

        So I hadn’t even thought about this until the other day when I was talking with my neurologist at the MDA clinic, but I realized that my head and neck control has improved significantly in recent years. My head used to tilt to the side quite often, especially when I was in a car. I also have a big head, which made these scenarios pretty comedic. “Hey Mom, my head’s falling over again.”

        However, this hasn’t happened in a while, and I’m betting it’s an effect of Spinraza. It was a cool realization, and I thought I’d share it here.

        Has anyone else experienced this?

      • #19188
        Adnan Hafizovic

        I had similar problems, but with exercise and massage, my neck is in good condition. I think our neck muscles are in a better condition than others. But Kevin maybe Spinraza gives some strength in your neck.

        • #19189
          Kevin Schaefer

          That’s good to hear. Yeah I’m glad mine is more stable now. It’s one less thing to worry about. Hope you’re doing well!

      • #19195
        Ryan Berhar

        I basically have zero head control. I’m sure it decreased over time, but I never had much to start with, either.

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