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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 4 replies, 3 voices, and was last updated 1 year ago by Ryan Berhar.

  • Author
    • #20017
      Rachel Markley

      I’d like to talk RULM. I hate this assessment (yes, I know hate is a strong word). My biggest issue with it is reach – I can perform a lot of the tasks if the item is in reach but because I’m not allowed to elevate my chair high enough, most of it isn’t in reach. After speaking with my new OT she thinks it’s unfair for adults because of contractures, etc. Thoughts? Suggestions?

    • #20019
      Kevin Schaefer

      Rachel, I know exactly what you mean. This particular test is by far the most frustrating part of my Spinraza evaluations. My OT is great, but it’s very difficult to meet the expectations of this assessment.

      I usually just try to score high on everything else. Do you do the pencil test where you have to draw a line through a maze? I’ve been doing well on that one.

    • #20020
      Rachel Markley

      Kevin, I have that too but struggle to use the average #2 pencil. Do they allow you to move your paper?

      • #20021
        Kevin Schaefer

        Yeah, I can move the paper, which helps a lot.

    • #20023
      Ryan Berhar

      I’m not even sure what that is, but frankly anything involving OTs has always annoyed me to death. I hate to say it, I know there are good ones, but they’re kind of out of touch in my experience.

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