Monthly Journal - February (2019)

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Monday, February 25, Through Sunday, March 3 - As bad as the previous week had been, this past week was a complete 360° turnaround. Everything fell into place and for some reason, nothing earth shattering happened. My job with BioNews Services is keeping me extremely busy and I couldn't be happier. The owners of the company came to Dallas on Tuesday, and they came by the house and we had a few hours so that we can sit and talk about future plans for the company and potential growth opportunities for my division. I'm now their Director of Multichannel Content, and I oversee all audio and video products that we produce throughout the company. While my plate is full, you will never hear me complain about being too busy. I know people who complain about their jobs and they hate the people that they work with, but you will never hear that coming out of my mouth. The owners of the company are aggressive with their growth plans, and making me an integral part of this company has proven to me that hard work does pay off.


When I went in for my workout with Emily on Tuesday, we worked on all of my core strengthening exercises. Everything seems to be going great with regards to physical therapy, and it seems that my exercises are getting easier each and every week. While I know I have a long way to go, the feelings that I am experiencing with regards to strength are exciting. As soon as one exercise gets to be too easy, Emily comes up with another one that challenges me. I've been lucky to have Laura and Emily as my therapists. Next week, Emily and Vicki will transfer me from my wheelchair to the therapy table and we will work on my balance exercises. Emily is going to start using a therapy ball as part of my balance exercises. She will place the therapy ball on my side, and while my arm is on the therapy ball, I have to lean to one side and come back into a neutral sitting position. This really works the core muscles along with the muscles in my neck. While we did this exercise nearly 2 weeks ago, we will begin multiple repetitions on both my left and right side beginning next week. Emily told me that she is also going to put the therapy ball in front of me, and have me lean forward and come back to a neutral sitting position as well as using the therapy ball on my left and right side. As I said earlier, as soon as I get comfortable with one exercise, they hit me with a new one. This continually challenges me and I can tell that my core strength has definitely improved. Next week when I go in for my workout with Emily, I will take pictures of us doing these new exercises, and I will put these pictures together in a video on my YouTube channel next Sunday. Along with working out, I'm also preparing to go back to UT Southwestern Medical Center for my eighth injection of Spinraza. My appointment is for Monday, March 11. I will discuss this in greater detail in next Sunday's video.


In this week's video, I discuss a question that many of us are going to be facing in the coming months. With the potential approval of ZOLGENSMA from AveXis Pharmaceuticals, in May or June of this year, those of us on Biogen’s drug, Spinraza, will be faced with the decision as to whether or not we should forgo the Spinraza treatments and began ZOLGENSMA, or remain on Spinraza. In my video, I give you my opinion as to how I feel regarding this potentially life-changing decision, and I share my thoughts on how I’m going to approach this decision. 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.  

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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 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. 

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Monday, February 11, Through Sunday, February 17 - It seemed that everything fell into place this week like a well-crafted jigsaw puzzle. I think the most surprising thing that happened to me this week was the way that I felt. My energy level was phenomenal and it seemed like I have more strength in my right arm. I know this may sound odd, but I measure my arm strength by how easily I can get my vapor stick up to my mouth. I usually have to set my right hand on top of my desk with my vapor stick in it, then leaned forward to get the biggest into my mouth. Throughout this entire week, I could lift the vapor stick up high enough to get it in my mouth without having to use my desk as a support. My neck muscles feel stronger, my right arm feels stronger, and my overall energy this week has been somewhat surprising. I go back to UT Southwestern Medical Center in about three weeks for my next injection of Spinraza. Usually, with about two or three weeks left before my injection, my body starts to slow down in my energy level begins to slow down. I'm finding it somewhat surprising that my energy level and my strength is as great as it is considering that I'm about to go in for my next injection. Maybe my body is getting used to some of the changes that I'm trying to make to it, because I haven't felt fatigued for a week and some time now.


When I went in for my workout with Emily on Tuesday, we had to do my 4 week reevaluation. This normally takes about 30 minutes, but this time, it only took Emily about 15 minutes to perform this reevaluation. Both Emily and I were surprised at the results that we got, and you can see my test results on my website. Click HERE to view my test results. Overall,My test results came out better than expected. When I first began the exercises on my left and right leg, we took measurements with regards to the amount of negative degrees that my legs are bending. When we started in October 2018, my left leg had a -27° bend, and my right leg had a -40° bend. After working on the stretching and range of motion, along with the ligaments and tendons in my knees, both the legs are now at -23°. While this may not have been a major improvement in my left leg, both Emily and I agree that the amount of correction that we have received on my right leg has been substantial. The amount of dorsi flexion in my left foot and right foot have also improved, with the largest improvement coming in my left foot. When I started in September of last year, the dorsi flexion in my right foot was -28° and it was -34° in my left foot. Last week, the amount of dorsi flexion in my right foot was -27°, and I had -26° in my left foot. Both Emily and Laura recommended that I get the dorsi flexion braces for each foot, and when I received these braces, I will wear them a few hours each day, which will hopefully better correct the amount of negative degrees in my feet. The rotation inside bending in my neck have also improved, with the greatest improvement coming when I rotate and bend my head to the left. The amount of degrees that I could rotate and bend my head from side to side will fluctuate, depending on how tight these muscles are during the reevaluation. Overall, Emily and I were extremely pleased with the results that we got and we will continue to work hard to improve these numbers. When I go for my workout next Tuesday, Emily will transfer me out of my chair and work with me on my balance exercises, along with the stretching and range of motion exercises on my knees, legs, ankles and feet.


In this week's video, I share some of the information that I found regarding the combination therapy between Cytokinetic’s drug Reldesemtiv, and Biogen’s treatment Spinraza. I also share the results I received in my four week physical therapy reevaluation.  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.

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Monday, February 4, Through Sunday, February 10 - I blinked my eyes, and the week was gone. I wish somebody could explain to me how come time is going by so quickly. My job with BioNews Services is keeping me extremely busy, so I'm sure that this has something to do with that. My energy level throughout this past week has been phenomenal, and I felt wonderful all week long. As a matter of fact, I was so busy this past week, my right hip hasn't been hurting me like it normally does. That makes me think that when I'm not busy, that's what I focus on, and that's the reason why my hip is hurting.


When I went in for my workout with Emily on Tuesday, she and Vicki transferred me from my wheelchair to the therapy table. In my last video, I made a statement that I was going to cause a scene where the other patients could hear me and I was going to ask Emily not to push me off the therapy table like she did a couple of weeks ago. Of course, Emily never pushed me off the table, but I thought it would be funny to say that. Like I said in my video last week, I had second thoughts about this and I never did what I said I was going to do. You will find that you want to keep your physical therapist as happy as possible, because if you don't, you may not like the results. After getting on the therapy table and gaining my balance, Emily and Vicki worked with me for about 20 minutes on my balance exercises. Emily pushed and pulled me in different directions, and this was a great workout for my core muscles. Emily is being a little more aggressive with how she pushes me, because my balance has improved to the point to where the exercises that we do are not as difficult as they used to be. Emily has to push me much harder now to get me to lose my balance. Eventually, we will start working on these exercises a different way, I will have to lean forward as far as I can and come back into a seated position, similar to the exercises that I do in my wheelchair. By leaning forward and holding this position, my core muscles, especially my abdominals, are constantly being activated. After doing these balance exercises for about five minutes, I begin to get sweaty. By the time we are finished, my shirt is literally ringing wet. After working on my balance exercises, Emily and Vicki laid me down on my back and we began working on the range of motion and stretching exercises on my legs. These exercises are going great. I'm able to tolerate Emily working on my feet and ankles much better than I used to. Some of this may be due to my swelling not being is bad, but Emily thinks that we are getting a little bit more range of motion regarding being able to flex my feet up toward my body. Either way, this exercise is not as grueling as it used to be. Next week, I go back in for my four week reevaluation. I will post these numbers to my website next week.


In this week's video, I discuss a couple of topics. First, I made a change to my website to include all of the podcast and flash briefings that I help produce for my employer, BioNews Services. I have included the podcast and flash briefings on my website so that my subscribers and followers will have access to them. Then, I review some of the information pertaining to a combination therapy between Cytokinetic’s drug, Reldesemtiv, and Biogen’s drug, Spinraza. They are currently testing these two drugs in a combination therapy for those of us who suffer from SMA. 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.