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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 1 reply, 2 voices, and was last updated 1 year, 1 month ago by DeAnn R.

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      • #14899
        Kevin Schaefer
        Keymaster

        In Michael Morale’s personal YouTube channel smajourney51, he did a video this week about preparing for injection days. He does things like avoiding foods with a lot of sugar and salt, limiting contact with people so as to avoid colds and drinking plenty of liquids.

        I’ll be honest, I don’t do much preparation other than drinking a lot of liquids the day before an injection. I barely even remember when my injections are, so I definitely don’t prepare weeks in advance or anything. I’m also too much of a people person to hibernate for long periods of time. But props to Michael for doing quality preparation and ensuring that he’s ready for injection days both mentally and physically.

        For those of you who are on Spinraza, do you do anything to prepare for your injections?

      • #15246
        DeAnn R
        Keymaster

        Honestly I don’t do anything special to prepare for injection day.  I’ve heard all the advice like to hydrate and stay caffeinated to prevent spinal headaches, but didn’t learn this until well after my first injection.  Since I didn’t have an issue I didn’t see the need to adjust my routine.  Six in, they’ve gone smoothly, fingers crossed that will continue.  It’s all good preparation advice, but always take into consideration your body, how you get injections and your doctors instructions.

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