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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 5 replies, 5 voices, and was last updated 2 months, 1 week ago by Kevin Schaefer.

    • Author
      Posts
      • #20700
        Kevin Schaefer
        Keymaster

        Hey everyone!

        Today, I’m going in for my ninth Spinraza injection. I’ve been extremely fortunate, as all my injections have gone smoothly, and I haven’t dealt with any side effects. I drink plenty of liquids the day before, and I take it easy on injection days.

        However, one of my biggest concerns before I started this process was the possibility of spinal headaches. I know people who have had these, and they sound terrible.

        Has anyone on Spinraza had spinal headaches? How have you dealt with them?

      • #20709
        Rachel Markley
        Participant

        I had the start of one with my last dose. I drank a medium Mt Dew freeze from Taco Bell (recommendation from Biogen FAM) and it went away!

      • #20712
        Ryan Berhar
        Participant

        Hope it goes well

      • #20713
        Lupa F
        Participant

        Closest I came to one was maybe for my 3rd or 4th dose when at the hospital they gave me a pillow for my head while I was laying down waiting to be allowed to go home. After a couple of minutes I could feel a headache coming on, but I took the pillow away and it mostly went away too so now I don’t let them give me a pillow.

        I do feel sort of mushy is the best way to describe it for the day of and next day after an injection. Like I can tell if I exert myself too much it’ll start feeling like a headache is coming on, but it’s never been serious enough that I needed to do anything other than stop exerting myself for a minute.

      • #20733
        DeAnn R
        Keymaster

        It went well? Thankfully I haven’t experienced this. Good excuse to have caffeine on hand though.

      • #20736
        Kevin Schaefer
        Keymaster

        Thanks everyone! Yep it went great. I drink a lot of caffeine, and it seems to do the trick each time.

        Rachel, Lupa, sorry you had to deal with these briefly, but glad they didn’t last!

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