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  • My Weekly Journal – 01/21 Through 01/27

    Posted by michael-morale on January 27, 2019 at 11:41 am
    Monday, January 21, Through Sunday, January 27 – Like last week, this week was extremely busy. While I was scheduled to go to physical therapy on Tuesday, I also had an appointment at UT Southwestern Medical Center on Thursday for my annual physical therapy assessment so that I can continue with my Spinraza treatments. The assessment that the physical therapist performed on me was basically core strength and upper body range of motion. Since they never performed this assessment before my Spinraza treatments, this was considered my baseline assessment. The physical therapist that performed this evaluation on me, was the same lady who conducted the physical therapy seminar during the 2018 Annual Cure SMA Conference, which was held in June 2018 in Dallas Texas. When I went into the room to meet the therapist, we both recognized each other. She’s also one of the instructors at UT Southwestern Medical Center’s Physical Therapy department. After my assessment, she told me that I did well, and then told me that in the Fall semester, they bring in lecturers to discuss different diseases. She asked me if I would be interested in speaking with the group of physical therapy students about physical therapy and those of us with SMA. I told her that it would be my honor to do this, because I feel that physical therapists, in the coming years, will see many more patients with SMA than in the past, and they need to be aware of what our requirements are with regards to building new muscles and getting stronger. There’s a lot of apprehension with regards to working with people with SMA, because physical therapists have never really had to evaluate and workout with those of us who suffer from this disease. The one thing that I’m going to stress during my lecture is that we deserve just as much of a chance of getting stronger as anybody else, and that physical therapy students should not be afraid to work with us. I will tell them that we are not china dolls, and that they’re not going to break us. My lecture will happen in September or October of this year, 2019.
    When I went to my workout on Tuesday, my new physical therapist, Emily, and her assistant, Vicki, transferred me from my wheelchair to the therapy table. In the picture in my journal, you see us working on my balance exercises. The first thing that I do after transferring from my wheelchair to the therapy table is to sit unassisted, without any support on my back or my sides, for a total of 15 to 20 minutes. Now that I’ve strengthened my core muscles, sitting unassisted is quite easy. Now, Emily will push me forward, backwards, and from side to side while I’m sitting on the table. With Emily sitting behind me, I can’t anticipate what she’s going to do, so when she pushes me forward, backwards, or from side to side, my job is to regain my balance and get back into a neutral sitting position. We’ve been doing this exercise for just over one month, and while it was difficult at first, I’m finding that it’s easier each time that we do it. Emily said that my core muscles are responding well, and this is making it easier for me to regain my balance. While I still lose my balance every once in a while, these exercises are becoming easier. While this looks like a sick sadistic game that Emily and Vicki are playing with me, it definitely has a purpose, and it’s actually quite a bit of fun. Click HERE to view the other pictures of my balance exercise workout.
    In this week’s video, I discuss my new balance exercises that I’m doing during my workouts with my physical therapists. While performing this exercise during my last workout, we took pictures, and I put a small narrative to these pictures so that I can further explain the benefits that I’m seeing regarding my balance. Those of us with SMA, have difficulty sitting unassisted. Sitting in our wheelchairs are easier because we have our back rest and our armrests to help support us, but sitting without any support on our back or our sides, can be very difficult. After working on my core strengthening for the past 6 months, I’m now able to sit on the edge of the therapy table without any support, and the exercises that my physical therapists are using on me, have not only increased the muscles in my core, my balance is exponentially better. Click HERE to view my video.
    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 next Sunday.
    deann-r replied 5 years, 4 months ago 2 Members · 1 Reply
  • 1 Reply
  • deann-r

    January 27, 2019 at 6:19 pm

    Great work!

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