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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 6 replies, 4 voices, and was last updated 5 months, 3 weeks ago by Kevin Schaefer.

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      • #19339
        Kevin Schaefer
        Keymaster

        Hey everyone! Hope you’re all having a great week.

        Check out my latest column here. I had to get bloodwork done a few weeks ago, in preparation for my eighth Spinraza injection. Finding a vein to draw blood from is tough for a lot of us. Fortunately though, this particular appointment went great.

        This situation made me think about the idea of “finding the sweet spot.” I wrote about how this concept applies to positioning in my wheelchair and bed, working at my computer, and other things. I hope you enjoy.

        Can you relate to this notion? Do you have any other examples?

      • #19348
        Tracy Odell
        Participant

        Wow! I can certainly relate!

        • #19353
          Kevin Schaefer
          Keymaster

          Thanks for the feedback! Yeah it’s crazy how many scenarios this idea applies to.

      • #19351
        Losmi
        Participant

        Nicely wrote column Kevin, lots of humor, but ”Lexington, Kentucky” line was the best one for me:D Is Lexington, Kentucky really notorious for accessibility, or is it like generally one should not expect many accessible sites in Kentucky state? Whatever the reason is, I like how the whole sentence sounds.

        So as I said I like the humor, but it is really kind of text that shows how much trouble people with SMA have to go through every single day.

        • #19354
          Kevin Schaefer
          Keymaster

          Thank you!

          And yeah my parents and I were in Lexington in May, which I wrote about. Oy. it was a hassle.

      • #19365
        DeAnn R
        Keymaster

        I can certainly relate. A few years back during a hospital stay I questioned if I’d ever be comfortable again. It’s also why I’m hesitant to get a new chair. Luckily most people understand that I’m seated for an extended amount of time so it’s important to be comfortable. I try not to be too picky though.

        • #19437
          Kevin Schaefer
          Keymaster

          I hear ya. I try to hold on to the same chair for as long as possible. Getting comfortable in a new one can be tricky!

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