My Weekly Journal – 11/19 Through 11/25Monday, November 19, Through Sunday, November 25 – What a great week this turned out to be. While my caregivers were going to be spending time with their family members during the Thanksgiving holiday, I had plans on staying home and watching the Dallas Cowboy game and catching up on some work that needed to be taken care of. On Monday, I received a phone call from Kristine. Most of you that have read my journal entries know that I grew up with Kristine and Kimber, and while most people would consider them neighbors, I consider them sisters. Christine asked me what I was going to be doing over Thanksgiving and I told her what my plans were. She immediately told me that she was changing my plans and that I would be spending the day with her family eating Thanksgiving dinner. I’ll speak more about this in just a moment. Since completing my last maintenance dose injection for this year, back on Monday, November 12, 2018, I sent my neurologist a note asking her to send a prescription to Interventional Radiology at UT Southwestern Medical Center’s William P. Clement Jr. University Hospital for all 3 of my maintenance dose injections for next year. I am scheduled to go in every March, July and November, and by sending the prescription for all 3 injections, I can then call Interventional Radiology and schedule all of my injections at one time, instead of trying to schedule them separately. NOTE: I recommend all of my subscribers and followers to do what I did. Call your neurologist or your primary care physician, and tell them to send a standing order for all 3 of your maintenance dose injections. If they just send a regular prescription, they will probably only allow you to schedule one injection at a time. By sending a standing order, this will allow you to schedule all 3 of your maintenance dose injections for next year. This way, you know that your on their schedule and it’s one less thing that you have to worry about during the upcoming year.For some reason, my right arm has been a little bit weak since my last Spinraza injection back on Monday, November 12. I’m not sure if it’s just a natural occurrence or if I’m not getting enough protein in my diet. I’ve been so busy the past couple of weeks, that my diet has not been exactly what it should have been, so I’m hoping that after eating enough protein and changing my diet, I can regain some of the strength. It’s not to the point to where I’m scared that something’s gone wrong, it’s just concerning because up until about a week before my injection, my right arm had been so much stronger. I try to remain on the positive side of everything in my life and I’m sure that my arm will increase in strength over the next week or two.Kristine and her husband Marty invited me to their house to be with their family during the Thanksgiving holidays. When you grow up with 2 special people like I did, you sometimes forget how blessed you really are. You never realize how much of an impact these individuals will have in your life until you get older. I never thought that we would ever be in contact with each other whenever I was growing up because I knew that friends would come and go in my life. Fortunately for me, these friends Kristine, Kimber and their parents Larry & Carol, would be those friends that would turn into family and that would remain in my life. While we may have had our issues from time to time growing up, we were never more than a phone call away and when we did reunite, the bond that was formed will never again be broken. Their parents were my 2nd set of parents while growing up. I spent as much time in there house as I did in mine, and vice versa. Kristine and Kimber were always at my house and we were always together, especially during the summer months when we were out of school. I took time to reflect on what was special in my life during this Thanksgiving holiday and if I was to list them all, this journal entry would be never ending. First and foremost, I am thankful for my family and friends and those who helped to take care of me on a daily basis, for without them, I don’t know where I would be. I’m thankful for being given the opportunity to take my Spinraza treatments, for without Biogen putting me on their free drug program, I would be a spectator instead of the participant. I’m thankful that I found a great physical therapist, Laura. Her encouragement and her willingness to help me, has forever changed my life. She, along with her group of wonderful therapists and assistants have allowed me to experience much more in life than just physical therapy. They allow me an opportunity to get out of the house and to be around great people along with doing something for my body that I know will benefit me as I get older.A Special Message To Those Who I Mentioned:To my caregivers: Thank you for allowing me to stay in my house and to have such a wonderful experience as I grow older. Many people in my condition are stuck in nursing homes or group homes, but since you came into my life, I know that this will never happen to me. Your love for me means the world to me and I hope that you know how much I love you.To Christine, Kimber, Larry & Carol: Thank you for not only being my neighbors, thank you for being my second family. Thank you for coming back in my life and please know that the amount of love that I have for you cannot be measured by feet and inches. LYTTMABTo Laura: Thank you for helping me to experience more than just muscle growth. Thank you for changing my life and giving me another reason to continue in this journey that I call my life. You could’ve easily told me that you didn’t have time to work with me when I was trying to find a physical therapist, but you took the time to not only learn about Spinal Muscular Atrophy, you also took the time to learn about me. Instead of working with multiple patients at a time, you spend the entire hour dedicated to my health and my improvement, and while this may not seem to be a big sacrifice to you, please know how much I appreciate you taking the time out of your day to allow me to grow stronger both physically and mentally. You and your group of therapists and assistants have forever changed my life and I’m excited about what the future holds for me, thanks to all of your hard work.When I went to workout with Laura this week, it was time for my 4 week reevaluation. Since this process takes the majority of the hour that I had to do my workouts, Laura doesn’t transfer me to the physical therapy table to work on my legs. Instead, we focus on taking all my strength tests and measurements to see how much improvement has occurred during the past 4 weeks. Overall, my test results showed improvement. My ability to bend forward and come back into a seated position improved by a few degrees and my ability to lean to my left and right and being able to come back into a seated position also improved by a few degrees. Unfortunately, my core strength seemed to be a little bit weaker this past reevaluation. After discussing this with Laura, she told me that I’m probably a little bit weaker in my core strength due to the fact that we’ve been spending so much time working on my legs. While this wasn’t a dramatic loss of strength, it’s still something that concerns me. Laura and I decided that what we would do would be to spend one week working on my legs and trying to improve my range of motion and flexibility, and we would spend the following week working on core exercises such as my abdominal and back muscles. Since next week will be week one in the four week session, we’re going to start out working on my legs. The second week will be dedicated to my core strength, and the third week will be dedicated to my legs. This is a great schedule because every 4 weeks, we will end on working my core strength which will coincide with my reevaluation. Since the reevaluation only takes about 30 minutes, we can then dedicate the rest of my time during this workout on my core muscles. The exercises that we will be focusing on during my core workout will be my crunches and my reverse crunches. My crunches involved Laura sitting behind me with the resistance band around my chest. After leaning forward, she will then apply resistance pulling me back toward the back rest of my chair. I will then lean forward against the resistance that she’s applying with the resistance band, forcing my abdominal muscles to work as I lean forward. During the reverse crunches, Laura will sit in front of me with the resistance band around my back. She will then apply enough resistance with the resistance band to force me to lean forward in my chair, and my job is to lean back and put my back against the back rest of my chair. We do 3 sets of 30 reps for both the crunches and the reverse crunches. These exercises definitely work the abdominal and back muscles and they also work the muscles in my neck. These exercises will also improve my balance while sitting in my wheelchair. I have added a new section to my Test Results page on my website. This new section will show my leg, foot and neck flexation results that we get during my reevaluation. Unfortunately, I did not record the measurements when we did the reevaluation last week, but I will get these results when I go back this week and will add these results to my website next week. Click HERE if you would like to view these results.In this week’s video, I’m going to answer a question that’s been floating around the SMA community and the medical community for nearly 2 years. When Biogen’s drug Spinraza became the first FDA approved treatment for Spinal Muscular Atrophy, there was quite a bit of chatter as to whether or not this was going to be considered a treatment or a cure. When I decided that I wanted to go through the Spinraza injections, early in 2017, I began researching Spinraza over the Internet. I wanted to know what it was and what it was going to do for me. In my search, I found a YouTube video of an interview that a local television station did in Arizona. They interviewed a young man by the name of Noah Spencer. Toward the end of the video, Noah made a statement that completely threw me off guard. He stated that doctors told him that after he was on this treatment for a given amount of time, that he would be able to get up and walk on his own. In the video that you’re about to watch, I copied a small portion of Noah’s interview and included it, so that you could hear exactly what he said, and I then give my interpretation regarding this controversial video. Click HERE to view my video.I hope that all of you who are reading my journal entry this week had a wonderful Thanksgiving. I hope you had an opportunity to spend it with family and friends, and I ask that you take a moment to think about the things in your life that you are thankful for and remember to be thankful for each of these wonderful gifts each and every day of your life. God Bless you, and I’ll see you next Sunday.
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