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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 4 replies, 3 voices, and was last updated 5 months, 1 week ago by Halsey Blocher.

    • Author
      Posts
      • #19576
        Ryan Berhar
        Participant

        Hey everyone, here’s Michael’s newest column. It differs from the typical nature of his column, as this is less of an update on Ella’s life, and more of a flashback to what her diagnosis was like. What stood out to me was the nerve conduction test Ella had to do. I’ve never heard of this being used to help diagnose SMA before, and it’s not only sad that she had to endure it, but it’s also difficult to watch your child suffer like that. With my own diagnosis, my doctor could apparently tell I had SMA simply by the way I threw a ball. Much less invasive haha. Every SMA diagnosis is shocking and brutal for the family, and this was no exception. If you happen to be going through this now, know that you’re not alone. There are groups like this full of people who have been there. What’d you take away from this column? Do you have any questions?

        Our Commitment to Taking Care of Ella Has Never Wavered

      • #19578
        Dennis Turner
        Participant

        Ryan, I was also diagnosed using electrical transmission.  In fact I have been tested this way 4 times, the last time my Neurologist said wait a minute, I have to have all the student interns see this! So she left me laying naked on the table with needles and wires sticking out to get them. I was early 20’s.

        When further doubts were raised regarding my diagnosis a genetic breakdown from a second muscle biopsy confirmed the original diagnosis.

      • #19579
        Halsey Blocher
        Participant

        I’m surprised they did this test on someone so young. Most doctors stopped using this method a few years before I was born. Glad to see Ella is excited for her new bathroom!

      • #19580
        Ryan Berhar
        Participant

        It just seems entirely unnecessary. There are other ways to test. I’m never letting them do this to me lol

        • #19593
          Halsey Blocher
          Participant

          Most doctors just skip straight to the blood test. I’m so grateful no one ever did this test on me.

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