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  • My Weekly Journal – 04/15 Through 04/21

    Posted by michael-morale on April 22, 2019 at 11:00 am
    Monday, April 15, Through Sunday, April 21 – Like last week, this week was extremely busy and productive. I had a wonderful opportunity to speak to one of my subscribers, whose son is about to go through his first Spinraza injection. I was able to speak to both of them, and to share my experiences with the treatment. They wanted to know what to expect, and we also discussed the benefits of physical therapy.
    I could hear the excitement in both their voices. The son was extremely excited about this new venture, and his father told me that he thought he would never see the day when there would be a treatment for SMA. I could hear the emotion in the father’s voice, and I can tell you that it brought tears to my eyes. I wish my parents had been here when I started my treatments, but I know that they are looking down on me, and that they are both excited for my future. The father told me that they had been watching my videos since the very beginning, and that he was so appreciative of the work I do. It’s moments like this that make the effort I put into these videos worth it. While I know that I will never have thousands of subscribers, the ones I do have mean everything to me. 
    This week during my physical therapy session, Emily and her students Carl and Derrek worked with me. While some people may feel uncomfortable letting physical therapy students assist them, I actually enjoy the fact that students are there to help. This is the only way that they are going to learn how to work with someone like me, and to learn about SMA. Given the fact that so many of us are now on active treatment, and with the upcoming approval of AveXis’s drug, ZOLGENSMA, more and more physical therapists are going to be seeing people with SMA. While Emily was there to assist, and to oversee what was happening, Carl and Derrek did the majority of my exercises, and I know that both of them are going to make great physical therapy assistants when they graduate.
    My exercises seem to be getting easier as I go through each week. My stamina and my ability to recover quicker with regards to my levels of strength, seem to be improving. While I know the benefits of Spinraza, I’m also very well aware of the fact that my physical therapy has been extremely important to my overall conditioning.
    While working on my balance exercises, Carl was standing behind me and Derrek was standing in front of me. With Carl pushing me forward, backwards and from side to side, I felt stronger with regards to my balance than I ever have. I jokingly told Carl that this was the best that he could do with regards to pushing me. I heard Emily groan in the background, and it wasn’t much longer that Carl started pushing me with much more strength and aggression, and the rest of my workout was quite difficult. While we all got a big laugh out of it, I’m the one who ultimately paid the price for my big mouth.
    After finishing my balance exercises, Carl and Derrek laid me down on my back and began working on the range of motion and flexibility exercises. While my feet were slightly swollen, they weren’t as bad as they had been. One of the more beneficial stretching exercises that we do is when they take my knee and pull it up to my chest, and rotate my hip to the opposite side. This really works the hamstring muscle, along with the muscle on the side of my hip. While these exercises may not be comfortable to go through, I can really tell a difference once I get back in my wheelchair. My right hip doesn’t hurt me at all, and usually the relief that I feel in my right hip lasts for about three or four days.
    After finishing all of my range of motion and flexibility exercises in my legs, Carl began stretching my neck and working on the rotation and range of motion with regards to me being able to look to my left and to my right. He spent quite a bit of time on the trapezius muscle, which is located between my neck and shoulder. Finally, Carl and Derrek set me back up into a seated position on the edge of the therapy table, and we worked with the therapy ball while I leaned to my left and my right.
    On Thursday, I went back to my pulmonologist for my six-month evaluation. When I went to the pulmonologist in October, they performed a pulmonary function test (PFT). The numbers that they got during my first evaluation would be the base numbers that they would compare to the results of what they got this past week. While most pulmonologists like to see an increase in lung volume and Lyme strength, the majority of them will tell you that any growth is good for people with SMA.
    My pulmonologist told me that my lung volume increased from 42% to 48%, and that my inhale and exhale tests improved as well. He was extremely happy with my results, especially given the fact that the normal increase should be in the single digits. He wanted me to start working with my cough assist machine, and to use it once a day for the next six months. He told me that my physical therapy was probably the reason why my numbers improved the way they did. I came out of this appointment feeling pretty good about myself, knowing that what I’m doing with PT and Spinraza are working.
    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, and I’ll see you all next Sunday.
    michael-morale replied 5 years, 2 months ago 2 Members · 2 Replies
  • 2 Replies
  • deann-r

    April 22, 2019 at 11:28 am

    Fantastic PFT results! Sounds like you’re doing great in all aspects.

  • michael-morale

    April 23, 2019 at 8:58 am

    Yeah, even the doctor was somewhat surprised at my PFT results. I really think physical therapy has a lot to do with my improvements, because by increasing my core strength, I believe this has definitely helped with my breathing.

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