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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 0 replies, 1 voice, and was last updated 1 year, 6 months ago by Kevin Schaefer.

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    • #16557
      Kevin Schaefer

      I’ve always had severe contractures in my legs, which is the case for a lot of people with SMA. I’m in my chair all day, everyday (except for PT days), and it doesn’t help that I’ve broken my right leg multiple times.

      Yesterday however, my primary physical therapist Jean said that my legs (particularly my right one) are stretching a bit more now. This is a huge improvement for me, and I think it’s a combination of doing water therapy regularly for the past few years and my Spinraza treatments. I also feel more energized these days, and I can move my arms and legs in the water more than I used to be able to. It’s a tremendous feeling.

      Who here does water therapy or some other form of PT regularly? As someone who was extremely skeptical about getting back into it a few years ago, I’m beyond grateful that my former primary doctor pushed me to do it. If anyone here has any questions I’d be happy to answer them.

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