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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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      • #15960
        Kevin Schaefer

        So I do have a primary physical therapist, Jean, who I work with regularly. However, because of her schedule and how fast the clinic can fill up around certain times of the year, I’ve worked with several other PTs as well.

        This month I had to rearrange my PT schedule, on account of the fact that I lost track of time and waited too long to make appointments 😬. Fortunately, there were a few slots available for the next few weeks with a different therapist. I’ve been fortunate to not have any issues with a therapist at this clinic yet, and the one I worked with today was great as well. Jean was able to be there today to go over my routine with her, which helped greatly.

        Working with a different physical therapist is kind of like training a new caregiver, but I actually find it much easier. When a new caregiver shows up I never know what they’ll be like or if they’ll work out, but with PT I trust everyone who works at the clinic I go to. As long as I’m working with someone who will listen to me, I’m happy to explain to them the specifics of my routine and let them know what parts of my body are the most sensitive. Like I’ve said before, finding a good PT and a good facility makes a world of difference. I would say that the anxiety of starting this process is very normal, but I can tell you that doing some kind of PT on a regular basis offers huge benefits for those of us with SMA.

        What questions do you all have about starting PT or finding a good physical therapist?

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