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This topic has 3 replies, 2 voices, and was last updated 2 years, 7 months ago by Kevin Schaefer.

  • Author
    • #12654
      DeAnn R

      In the latest episode of Dose of DeAnn: A Glimpse Into My Life With SMA, I share my experiences with occupational therapy. Growing up, I hated occupational and physical therapy. It’s a common joke among people with disabilities that P.T. stands for “physical torture.”

      However, now that I’m on Spinraza, I definitely see the benefits of these kinds of therapies and exercises. Occupational therapy not only helps me exercise and stretch my upper-body muscles, but it also allows me to evaluate the progress I’ve made since starting Spinraza.

      In this video, I provide footage of a recent O.T. appointment, as well as some commentary at the beginning and the end of the video. Here, you all can get an idea of the kind of exercises that my occupational therapist has me do, and how these exercises work to evaluate my upper-body strength and capabilities. A lot of these involve stretching, squeezing small objects and moving my arms as much as I can.

      Occupational and physical therapy require time, commitment and determination. However, as someone who avoided any kind of physical therapy for a long time, I’m glad I do it now. If you have SMA, and especially if you are receiving Spinraza, I strongly recommend looking into physical and occupational therapy. It takes some getting used to at first, but I can say from experience that it’s well worth it.

      What about you all? What experience do you have with occupational and/or physical therapy? What reservations do you have? Are any of you on Spinraza and doing occupational therapy?

      Be sure to subscribe and check out the SMA News Today YouTube channel, where you can find all episodes of Dose of DeAnn: A Glimpse into my Life with SMA. You can also connect with me directly, right here on the forums page. 

    • #12668
      Kevin Schaefer

      Great video DeAnn! Yes I actually go in tomorrow for a clinical appointment/Spinraza evaluation. I went to one of these back in January, and I found it to be helpful. I was surprised by the things I was able to do, and I like that you included footage of your appointment in this video so that viewers can get an idea of what an occupational therapy appointment looks like.

      Ditto on hating these as a kid though. I definitely had to be dragged to any kind of PT or OT back then, and for the longest time I didn’t go. After my doctor bugged me enough, I started doing water therapy a few years ago. Now I love it! My physical therapists are great, and they know exactly how to transfer me and what my physical limitations are. Especially with Spinraza, it’s good to see progress with how my muscles are looser now and I’m able to do more stretches and such. I also encourage anyone with SMA to give PT and OT a try.

      • #12675
        DeAnn R

        Thanks! Good luck with your appointment. My next evaluation is in July.

        As far as therapy goes I’ve noticed each therapist does something different so you can pick up a little here and a little there to find what works for you.

        • #12686
          Kevin Schaefer

          Thanks! Yeah it went really well. I’m about to do a separate post about it.

          And yeah I agree. I’ve worked with different therapists for aquatic therapy, and it really helps.

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