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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 2 replies, 2 voices, and was last updated 2 years ago by Kevin Schaefer.

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    • #12931
      Kevin Schaefer
      Keymaster

      Generally speaking, my energy levels have improved significantly since I started receiving Spinraza. I’m not immune to fatigue of course, but it does pale in comparison now to what it was before I started the treatment. I used to be exhausted by mid-afternoon or so.

      By the end of the week I’m usually pretty beat, but for the most part I don’t feel exhausted in the middle of the day like I used to. I’ll rest in my chair if I need to, but I can typically go a full work day feeling fine. I also drink a fair amount of soda, and the caffeine helps me.

      What about you all? For those who are on Spinraza, have your energy levels improved? Do you still experience fatigue often? How often do you try to take naps and such?

    • #12969
      Alex Telenson
      Participant

      First time posting, long time reader. These forums are great! For sure keep em’ coming (I’ll try and be more active).

      The improvement in the time it takes to fatigue is the largest improvement I’ve noticed since receiving injections. I’ve only had the loading doses, but my energy levels seem what they were when I was younger, which is a blessing (fingers crossed insurance stays fine). I’m not much of a napper because I’m border line insomniac and I can’t afford getting in bed and tossing and turning because I slept during the day, but what I’ve been able to do is workout (pool therapy, etc.) and feeling better (maybe even stronger!) after each session. Before Spinraza I felt weak after I worked out, and weak when I didn’t work out. It was a lose-lose. Things are starting to turn, however – oh so slowly, but better than nothing.

       

      • #12972
        Kevin Schaefer
        Keymaster

        Thanks for posting Alex! And I appreciate the feedback.

        Yeah I feel like my energy levels are closer to what they were when I was a kid as well. It’s exciting to see! And yeah, I also do water therapy and that helps me tremendously. Glad it works for you as well.

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