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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 12 replies, 8 voices, and was last updated 1 year, 5 months ago by Michael Morale.

    • Author
      Posts
      • #12770
        Kevin Schaefer
        Keymaster

        I’m kind of a soda addict, and it definitely helps me get through the workday. I usually have two to three Cokes/Mountain Dews on a daily basis. My eurologist even suggested lime sodas for me, as it helps me prevent kidney stones.

        I’m not suggesting you become a soda addict, but personally I find the caffeine and all to help me with my energy levels. Spinraza has also helped a lot in this respect, as I’m generally less fatigued than I used to be.

        What about you all? Are any of you big soda-drinkers? Do you have any other tips for staying focused and energized during the day? Share your thoughts and suggestions.

      • #12789
        Ryan Berhar
        Keymaster

        I’m a coffee addict. While I have never drank it for the caffeine, it does give me a boost of energy in the afternoon.

        • #12795
          Kevin Schaefer
          Keymaster

          Yeah that’s when I need it too. Glad coffee works for you.

      • #12801
        Adnan Hafizovic
        Participant

        I like also coffee ,specially  I like turkish coffee and also helps me to give more energy and I m not sleepy during the day.But we must carefull that we don t consume to much.

        • #12810
          Kevin Schaefer
          Keymaster

          I definitely agree that you don’t want to consume too much, but that’s good to find what works for you.

      • #12803
        DeAnn R
        Keymaster

        I was an avid Mountain Dew drinker during my college years.  When I was in the hospital a few years back they put me on medicine for a fast heart rate.  I’m sure it has more to do with breathing issues but I decided to cut back on caffeine.

        It is interesting though, even my doctor is recommending caffeine to help prevent and reduce spinal headaches from the Spinraza injections.  So far I haven’t needed it, but I’ve heard it’s helped.

        • This reply was modified 1 year, 6 months ago by DeAnn R.
        • #12811
          Kevin Schaefer
          Keymaster

          Yeah I drink a lot of Mountain Dew the day before and the day of an injection. It helps me for sure. I’m five injections in, and I have yet to get a spinal headache.

      • #12829
        Adnan Hafizovic
        Participant

        hey does anyone drinks energy drinks for example Red Bull?I drink sometimes and give little energy.

        • #12836
          Kevin Schaefer
          Keymaster

          Those are a little too strong for me, especially Red Bull. But if you can handle them they can definitely give you an energy boost.

      • #12842
        Dennis Turner
        Participant

        I used to live on coke. Then switched to coffee. Therefore I can honestly say caffeine helps with life.

      • #12847
        Mike Huddleston
        Participant

        I drink Tazo’s Awake tea every day.  It’s a black tea with a decent amount of caffeine, about 60 mg.  Just one of those in the morning and then 100% water the rest of the day.   On the days I go into the office, I get up at 4 a.m.  I have about 1/2 cup of coffee after the tea, then water.  Never touch soda.  I fear energy drinks and have never had one.  Fear may be too strong of a word.

        Have not (knock knock) had headaches with the Spinraza treatments, at least through the first 4 loading doses.

      • #13202
        Habib Diallo
        Participant

        <p style=”text-align: center;”>hi i use to drink red bull. it give me a little energy</p>

      • #13259
        Michael Morale
        Keymaster

        Caffeine has never really done much for me. I love coffee, but unfortunately, if I drink too much of it, I find myself having to go to the bathroom too many times per day. When you’re caregiver is away from the house, you tried to avoid drinking something that’s going to make you go to the bathroom.

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