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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 5 replies, 3 voices, and was last updated 1 year, 2 months ago by Kevin Schaefer.

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    • #18989
      Kevin Schaefer
      Keymaster

      Happy Thursday everyone! Hope everyone is having a great week.

      Yesterday, I went in for my eighth Spinraza injection. It went well, and there were no complications. As I’ve written about in previous columns and forum posts, I do cervical injections (shots through my neck). Due to complications from my spinal fusion surgery, which I had in 2005, I’m unable to do the standard spinal tap injection. The cervical method has worked great for me, and it’s something you may want to discuss with your doctors. Know that there are alternative injection methods for those of us who are adults with SMA.

      What questions do you have for me, or about Spinraza in general?

    • #19001
      mehdi
      Participant

      Which improvement do you feel ?

      • #19002
        Kevin Schaefer
        Keymaster

        Hey Mehdi, thanks for commenting.

        So for me, my energy levels have improved significantly since I started Spinraza. I feel better throughout the day, and I don’t experience fatigue nearly as much as I used to. I also am able to sit up a little straighter. When I go for aquatic therapy every week, I’m able to sit unassisted on the bench that’s built into the pool. So yeah, it’s a lot of little things for me.

      • #19003
        Kevin Schaefer
        Keymaster
    • #19010
      DeAnn R
      Keymaster

      Welcome to the million dollar club! Isn’t it hard to believe you’ve had 8 doses? I’m wondering when we’ll stop counting doses and start just saying the amount of time we’ve been on it.

      • #19011
        Kevin Schaefer
        Keymaster

        It’s crazy! And heh, I’m pretty much already at that point. The time between this injection and the previous one really flew by.

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