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My Weekly Journal – 02/18 Through 02/24
Monday, February 18, Through Sunday, January 24 – This was an extremely frustrating week for me. It’s not often that I let something upset me for the entire week, but this was one of those weeks that got under my skin, and it made me so angry, I had a hard time letting go of it. I talk about this in great detail in my weekly video, but this frustration revolved around the topic of getting SMA added to the state list in Texas for newborn screening. SMA was added to the national registry in the United States for newborn screenings, but it has to be adopted at the state level before the screenings can begin. My video not only discusses my frustrations, I also give my advice to my subscribers and followers on what to do to ensure that SMA is added to their state list for the screening of SMA on newborns. This topic is dear to my heart because we are so close to eradicating SMA in infants, I find it frustrating and somewhat nerve-racking that our government officials are moving so slowly with regards to this topic. I’ve never been a big proponent of government, and the brick wall that I hit this week regarding adding this disease to the newborn screening listing Texas, only reaffirmed my belief that government and our governmental officials have no earthly clue as to what they are doing.
When I went in for my workout with Emily on Tuesday, both she and Vicki, her assistant, transferred me from my wheelchair onto the therapy table. The week before, while Emily was doing my four week reevaluation, she told me that she was going to come up with a few new balance exercises for me to do while sitting unassisted on the therapy table. After transferring to the therapy table, we did our normal balance exercises where Emily would push me forward, backward and from side to side to try to throw me off balance. These exercises are getting easier for me to do because I’ve noticed that my core strength is improved to the point to where I’m able to keep my balance without too many difficulties. The new exercise that we are doing involves Emily putting a therapy ball on my side, and I have to rest my arm on the ball and lean to that particular side. After leaning to that particular side, I then have to get myself back into a neutral sitting position. Emily stabilized my arm on the ball so it would not fall off, and as I began these exercises, while I found them somewhat challenging, I was surprised at the ease at which I could accomplish my goal. The first couple of times that I did this, I thought Emily was helping me get back into a neutral sitting position, but she told me that the only thing that she was doing was stabilizing my arm so that it wouldn’t fall off of the therapy ball. This surprised me because this meant that I was recovering my balance on my own without any help from her. We did this on the left side first and then transfer the therapy ball and repeated this exercise on my right side. Leaning to my left and recovering was easier than leaning to my right side. When sitting in a neutral position, my right hip is a little higher than my left hip, so leaning to my right to begin the exercise was a little bit more difficult than leaning to my left. Emily and Vicki helped me lean to my right to get started on the exercise, but I was able to recover and get back into a seated position without too much difficulty. This exercise, with the therapy ball, really works the abdominal muscles and the muscles in my sides. While we only did a few repetitions on each side, we will increase the amount of repetitions as we progress from week to week. The next time that we do these exercises with the therapy ball, I will take pictures and put them on my website for you to see. After finishing all of my balance exercises, Emily and Vicki laid me down on my back and Emily began working on the range of motion and flexibility exercises in my legs, knees, ankles, feet and toes. During my last reevaluation, I stated that both of my legs were now at a -23° bend. While this is still a substantial amount of bend in my legs, my right leg use to have a -40° bend when we first began, so both Emily and I are please that both of my legs are now at the same level. Emily works my right leg a little more than my left because all of the damage in my hip is on my right side, so by working out my right leg harder than my left, this has not only improved the amount of negative degree bend in my right leg, it is also helped the damage in my right hip because after my exercises, and after I transfer back from the therapy table to my wheelchair, my right hip feels great for the rest of the day.In this week’s video, I discuss a topic that completely ruined my week. A few months ago, I did a video where I discussed how SMA had been added to the national registry in the United States for newborn screenings. While SMA was added to the national registry, it still needs to be adopted by each individual state to become effective. Some of the information that I was able to get completely blew my mind, with respect to the complexity and difficulty it takes to get this disease added at the state level so that doctors can begin screening newborns immediately after their birth. This subject is dear to my heart, because we are so close to eradicating SMA in these little infants. I give you my advice on what to do and I ask all my subscribers and followers to please take action on this as soon as possible. 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. -
2 Replies
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Newborn screening is an issue close to my heart. Minnesota is finally among the states to adopt this practice. Keep pursuing it for Texas, it’s definitely worth the effort. Also keep up the effort in PT. Sounds challenging and rewarding.
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I completely agree with you, Michael, how money is spent on a stupid thing in all countries in the world, it’s enough to see how much money is spent on the army and weapons.And how do you end up with balance exercises, Michael? That exercise for me was hardest, I always had and have great fear that I would not fall.
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