• Spinraza Evaluation #2

    Posted by kevin-schaefer on June 22, 2018 at 2:41 pm

    This morning I went in for a clinical appointment, which included my second Spinraza evaluation. If you saw DeAnn’s most recent video, you can get an idea of what this is like. I’m still pretty tired from both this appointment and the Cure SMA conference, but I did want to share a little about how the evaluation went.

    Basically, I met with an occupational therapist who had me go through a few different tests and exercises to see the effects of my Spinraza treatments. These tests included moving my hands toward my stomach without assistance, lifting a coin, sliding a 200 gram weight across a laminated piece of paper, lifting the weight, drawing a curved line on a piece of paper and tearing a piece of paper. I was surprised by some of the tasks I was able to complete. My hands moved across my tray much easier than last time, and overall it felt like I had exerted less energy than the last time I did this. I was unable to tear the paper or draw, but I was able to lift a coin with one hand.

    These little improvements are big victories for us, especially adults with SMA. I was encouraged by this appointment, and I’m curious to hear from others here who are receiving Spinraza about your experiences.

    Also, has anyone felt a sort of tingling sensation in their legs or arms since starting the treatment process? I feel this occasionally. I don’t think of it as “I’m going to walk tomorrow!” or anything, but it’s nice to see that maybe my muscles are waking up.

    kevin-schaefer replied 6 years ago 1 Member · 0 Replies
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