31 Days of SMA: Physical Therapy for Adults With SMA

Written by Kevin Schaefer |

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Day 18 of 31 Days of SMA⁣⠀ Topic: Physical Therapy ⁣⠀ ⁣⠀ This is @markley67 story ⁣⠀ ⁣⠀ I just started back with physical and occupational therapy (PT/OT) a few weeks ago after a 15+ year hiatus. I was very nervous in the weeks leading up to it but it has been much more enjoyable as an adult. ⁣⠀ As a kid, most of my therapy occurred through school as part of my IEP. I don’t remember much about these sessions except the bad. Apparently, I had some great therapists and supposedly enjoyed them, but all I remember is pain, angst, and my stubborn side coming out in full force. Now let’s get into why I disliked it. ⁣⠀ 1. Pain. I remember telling the therapist when it would start to hurt, and then they’d ⁣⠀ keep going. To be fair, I’m sure I exaggerated a bit. However, I also think because I was a kid, they thought I was being dramatic. ⁣⠀ 2. Getting pulled out of class. I have spent so much effort over the years trying to blend ⁣⠀ in. I despise anything that draws attention to me. Getting pulled out of class once a week drew questions from other kids. As I got older and coursework became more difficult, missing an hour was a lot. Oh yeah, and pre-teens pretty much only care about being with their friends! ⁣⠀ 3. Being on display. My 2nd-8th grade was in the same building. Said building was old and ⁣⠀ didn’t have a private room for therapy. Therefore, therapy took place in the lobby (two walls of the room were glass), or a corner of a classroom or the stage in the gym – both had classes taking place in them. The stage was up a flight of steps, so I had to be carried up and those steps also led to the girls’ locker room. So much for blending in. ⁣⠀ All this led to my parents and I making the decision some time in middle school to pull me out of therapy. I wish someone had taught me to view therapy as an exercise like running or biking and to make it fun. And most of all, I wish adults had listened to me about my body. ⁣⠀ As an adult, it’s been focused on taking care of my body. They listen to what I’d like to do and work with me as far as limits, pain, and the amount of time required (they frown upon you doing range of motion in professional meetings). ⁣

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About the Author

Kevin Schaefer Kevin Schaefer (he/him) is a writer, podcaster, and lover of all things pop culture. Diagnosed with SMA type 2 at the age of 18 months in 1995, he shares a vast array of hilarious and eye-opening stories from his life with a neuromuscular disability. He works as the associate director of community content for this site’s parent company, BioNews. He also hosts the SMA News Today Podcast. Kevin is a graduate of North Carolina State University and lives with his parents in Cary, NC. People regularly mistake him for Tony Stark, on account of his intellect and advanced technological equipment.

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31 Days of SMA physical therapists physical therapy SMA Awareness Month
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