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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.


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        Kevin Schaefer
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        I’ve always had severe contractures in my legs, which is the case for a lot of people with SMA. I’m in my chair all day, everyday (except for PT days), and it doesn’t help that I’ve broken my right leg multiple times.

        Yesterday however, my primary physical therapist Jean said that my legs (particularly my right one) are stretching a bit more now. This is a huge improvement for me, and I think it’s a combination of doing water therapy regularly for the past few years and my Spinraza treatments. I also feel more energized these days, and I can move my arms and legs in the water more than I used to be able to. It’s a tremendous feeling.

        Who here does water therapy or some other form of PT regularly? As someone who was extremely skeptical about getting back into it a few years ago, I’m beyond grateful that my former primary doctor pushed me to do it. If anyone here has any questions I’d be happy to answer them.

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