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How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


This topic has 12 replies, 8 voices, and was last updated 2 years 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 2 years, 1 month 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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