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My Weekly Journal – 04/08 Through 04/14
Monday, April 8, Through Sunday, April 15 – This is been an extremely busy and productive week. Since doing my last video a few weeks ago, nothing dramatic has changed in my life, and sometimes it feels like I’m stuck in the movie Groundhog Day. One day kinda feels like the next, with a few changes sprinkled in for good measure. My overall energy level has been excellent, and there’s a lot of excitement in the air with regards to new and upcoming therapies that could be approved by the FDA in the not so distant future. As soon as Spinraza became available as the first treatment, our lives have been extremely busy with everything that’s happening since starting our treatments. Now that the majority of us have been on active treatment for the last year or so, I feel that my days are becoming more predictable, which definitely makes it easier for me to plan what I’m going to be doing.
This week, when I went for my workout with Emily, she and her to physical therapy students, Carl and Kenneth, performed my four week reevaluation. They took all of the measurements, and we were quite surprised regarding the results, compared to when I started doing some of these exercises back a few months ago. They started out by measuring the negative degree bend in my legs. When we started doing these exercises during the first part of October 2018, my left leg had a -27° curve, and my right leg had a -40° curve. Now, my left leg is it -18° and my right leg is it -21°. This is a substantial amount of improvement, because therapists consider 0° to be perfectly straight. While I may have only improved by 9° in my left leg, I’ve improved by 19° in my right leg. My dorsiflexion in my feet have improved slightly, but we have a long way to go. My left foot, back in October 2018, was it -34°, and my right foot, back in October 2018, was it -28°. Now, my left foot is -30°, which is a 4° improvement. My right foot, back in October 2018, was at -28°. Now, my right foot is at -37°. My right foot tends to swell and have substantial edema around the ankle, which hinders my foot from being able to flex back upward toward my body, so I’m not seeing as much improvement as I would like in my right foot, but I know that after the swelling goes down, this should improve. The rotation and side bending in my neck have remained around the same numbers since starting these exercises in October 2018. I’m able to look to my left at 26°, and I’m able to look to my right it 22°. These were approximately the same numbers that I had when starting these exercises, so Emily and I are hoping that these numbers will improve as time goes on. While testing my abdominal muscles, Emily did say that I have shown improvement in all three ranges of these measurements. She measures me first when I’m leaning around 45°. Once in position, Emily will pull me up with her hands and my job is to resist her from pulling me back up into a seated position. We also do this when I’m leaning at 30°, and at 20°. I haven’t improved as much as what we would like when leaning a 20°, but again, this will take time. Emily stated that I’ve improved on my side to side exercises as well. I’m able to lean further to my left and to my right and get back into a seated position without assistance, and much of this is due to the strengthening and my core. Overall, my measurements improved with the exception of the dorsiflexion in my feet. After finishing all of these measurements, Carl and Kenneth help me do the rest of my core strengthening exercises with the time that we had left. One of the most important exercises that 
I do with regards to my core and the isometric exercise on my back. Both Carl and Kenneth sat in front of me and put the resistance band around my back. Once in position, they pulled me toward them and my job is to keep my back flat against the back rest of my chair. We do this for a total of two minutes, which really works my abdominal muscles well. This exercise has been beneficial with regards to me being able to lean back in my chair while I go down the ramp in my van. I no longer need anybody to put their hand on my chest to keep me from falling forward. We also use the resistance band on my neck exercises as well. The only difficult part of this exercise for me, is when they are pulling my head forward. They place the resistance band around my head, and while sitting in front of me, they pulled the resistance band toward them which forces my head to go forward. My job is to keep my head in a neutral position without falling forward. We have noticed some strengthening in this exercise, and we will slowly be adding stronger resistance bands as I improve. Next week, I will transfer out of my wheelchair back to the therapy table so that we can work on the range of motion and flexing exercises on my legs, knees, ankles, feet and toes.In this week’s video, I talk about the upcoming approval from the FDA regarding AveXis’s drug ZOLGENSMA. Even though we anticipated the approval around the end of May or the first of June, I discussed my gut feelings regarding when I think ZOLGENSMA will be approved as the second FDA approved treatment for those of us who suffer from spinal muscular atrophy. My opinions are my own, but I’m usually correct when it comes to listening to my gut feelings. Along with sharing my opinions regarding the upcoming approval, I also give you some advice on what to do so that you can make an informed and educated decision as to whether or not you would eventually want to receive this particular treatment. Click HERE to view my video. Also, be sure to checkout my other social media sites as well. Twitter, Instagram and Facebook.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 in a few weeks. (Don’t forget, I’ll be posting my journal each week, so be sure to keep checking to keep updated.) -
2 Replies
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Nice progress!
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Thank you DeAnn. It’s a lot of work, but it’s well worth it.
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