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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.

  • This topic has 0 replies, 1 voice, and was last updated 4 months, 3 weeks ago by Michael Morale.

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        Michael Morale
        Keymaster
        Monday, July 8, Through Sunday, July 14:
        This week started out with a bang, and it got better as the week went on. On Monday, July 8, I went back to UT Southwestern Medical Center for my fifth maintenance dose of Spinraza. It’s hard to believe that I’ve now had nine injections, and it shocks me how fast the time has flown by. This was probably the smoothest and easiest procedure that I’ve gone through, and I detail everything that happened to me in my latest video.
         
        First though, I went in for my regular PT appointment this past Tuesday with Emily and Vicki. Emily will be doing another article for the SMA News Today HCP site, which is our healthcare professional website. Her article will detail how to transfer someone with SMA from their wheelchair. While most physical therapists know how to transfer a patient using a slide board, not many therapist have had to transfer someone who is unable to assist in the transfer process. This article will detail how to do this.
        During my workout, one of the physical therapy students that was there took pictures as Emily and Vicki transferred me, and I will use these pictures in Emily’s article. After transferring me to the therapy table, we worked on my balance exercises. Emily did her normal perturbations, where she pushes me forward, backwards and from side to side. She also shook the table with her knee, which added another degree of difficulty. Through these exercises, my core muscles get a great workout.
        After about fifteen minutes, they laid me down on my back and began working on my range of motion and flexibility exercises. Then, Emily worked on the muscles in my neck. We then finished with some resistance band training while I leaned from side to side. These exercises worked the oblique muscles. Next week, Emily and I will work on my core strengthening exercises, using the resistance bands.
         
        In this week’s video, I provide a recap of my last Spinraza injection. I also give my subscribers and followers some pointers on how to avoid getting a headache after one of these procedures. Headaches are a common side effect of any intrathecal or spinal cord injection. Click HERE to watch my video.
         
        I’ve updated the flash briefings that I do for BioNews Services. Click HERE to go to the flash briefings.
        Does anyone have any questions regarding Spinraza or physical therapy?
         
        I hope that all of you had a fantastic week. Do something for yourself this upcoming week that will make you a better person. God bless you, and I’ll see you all in a few weeks.
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