Monthly Journal - July (2018)

Monday, July 9, Through Sunday, July 15 - The last four months have felt like an eternity. It seems as if I was excited about my second maintenance steps the day after I received my first maintenance dose back in March. As I went back to UT Southwestern Medical Center, I was a little nervous that they would hit another nerve when doing my procedure. When they hit a nerve during my procedure in March, it really wasn't that bad, but it's still something that was in the back of my mind as I went into the hospital on Monday, July 9th. I'll explain more about this procedure a little further down in my journal entry. This week was also filled with contractors and repair work that I needed to accomplish after all of the hail damage that occurred over a month ago. Try doing YouTube videos, podcasts and flash briefings while having eight people running around on the top of your work with shovels and nail guns. Trying to do a thirty second podcast, hoping that one of the contractors won't fire their nail gun was extremely frustrating. While I knew that I couldn't go outside and asked them to be quiet, there was still something that I did quite a bit of consideration. Luckily, what was supposed to take two days, only took one, so I guess I should count my blessings.


When I went to workout with Laura this week, everything went smoothly. Since it had been four weeks since she reevaluated me, the first 20 minutes of our workout included going through all of these tests to check my progress. Overall, I did great. My range of motion on my side to side exercises improved, and I was able to lean forward in my chair and get back into a seated position by myself quite a bit further than I had done a month ago. My resistance strength also improved. This resistance from is when Laura tries to pull me back into my chair while I lean forward. This is a subjective test because there is nothing they can use to actually measure the amount of force that is being applied. Laura has me lean forward, and she puts her hands on my shoulders. As the test begins, she pulls me back into my chair and she can tell how much force she's having to use to get me back into a seated position. All of the other tests that we do, like my side to side exercises, and the exercise where I lean forward and pull myself back into a seated position, is measured in degrees. As I'm leaning forward, or from side to side, Laura measures the amount of degrees and then compares this with the numbers that she took from four weeks earlier. Overall, Laura and I were pleased with my results. In three weeks, we're going to start working on my legs. Much of this type of physical therapy will be stretching. I need to be able to straighten my legs out further than I'm currently able to do, and by stretching these muscles and ligaments, we're hoping to be able to gain more range of motion in my legs. I'm also hoping that we can stretch my hamstrings. If we can do this, this may help with some of the discomfort that I'm experiencing in my right leg.


My second maintenance dose injection went much better than I thought it would. As I stated earlier in my journal entry, I was somewhat nervous about going through this procedure because I was afraid they were going to hit another nerve like they did in March. Usually, it takes anywhere from thirty to forty-five minutes to complete one of my procedures. This time, from the time they started to the time that they took me back to my room, only took a total of fifteen minutes. They started the procedure at 1:05 PM, and I was back in my room by 1:25 PM. The student doctor that performed my procedure did a fantastic job. For those of you that don't know, UT Southwestern Medical Center is a teaching hospital. The student doctors are usually the ones who perform the procedures, but the attending physicians are always there next to them giving them pointers and advice, and making sure that everything is done properly. My second maintenance dose injection was probably the easiest procedure out of all of the procedures that I have done since I began my Spinraza injections. As I was getting ready to go to bed at 7:45 PM, I hit the proverbial brick wall. I started suffering from a migraine headache, and as the headache increased, I began getting nauseated to the point to where I thought I was going to throw up. After drinking a cup of black coffee, my headache began to get better. For the nausea, I took three tablets of activated charcoal. When activated charcoal gets into your stomach, the charcoal will absorb much of the acid in your stomach that is causing the nausea. After about two hours, I went to bed and I slept throughout the night. When I woke up on Tuesday, my headache and nausea were gone, and I didn't suffer any other side effects for the rest of the week.


In this week’s video, I'm giving everyone an update with regards to my second maintenance dose of Spinraza. On Monday, July 9, 2018, I went back to UT Southwestern Medical Center to receive my injection. I detail everything that happened to me during the procedure, and I also detail what happened when I hit the proverbial brick wall the evening after my injection. I give my suggestions as to what to do, if you find yourself in the same situation that I was in. While this was one of my most successful maintenance dose injections, I learned a valuable lesson on what to do when you hit a stumbling block regarding one of the side effects of the treatment. Click HERE to view my video.


I hope that this past week was good for you, and I hope this upcoming week is better than the previous. Do something for yourself this upcoming week, that's going to make you a better person, and do something for someone else this upcoming week, that will improve their life. Until next Sunday, God bless.

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Monday, July 2, Through Sunday, July 8 - What a fantastic and hectic week this was. The way it felt, there must have only been three days this week because I have no idea where the other four disappeared to. Late Sunday evening, one of my caregivers found out that her mother had recently passed, and she and her husband had to leave and go out of town for two days. Their daughter, who was my original caregiver, came over and stayed with me. As they were leaving on Monday morning, I was preparing for my photo shoot with the photographer for the publication that Health Monitor Magazine was going to write about me. The photo shoot was done by Kelsey Wilson Photography. Kelsey, along with her assistant, did a great job, and things couldn't have gone any better. She got to my house around 10 o'clock in the morning and we went over to my neighbors house to do the photo shoot. My neighbor has a million-dollar home sitting on the golf course side of the community that I live in. To say that his backyard has a better view than mine would be an understatement. Kelsey took around 200 shots with her camera and she said that the pictures should come out great. I got to view quite a few of the pictures on her camera and she said that after she goes through and corrects some of the lighting, they should be perfect for the article that Health Monitor Magazine was going to write. I couldn't believe how fast the hour went while doing this photo shoot with Kelsey, and I must say, she was a pleasure to work with. After I got home, I quickly noticed that I need to go to my dentist to get my teeth whitened. I sent her an email asking her if she could give "Snagglepuss" some whiter teeth in the pictures, and she wrote me back and said that she could accomplish this. I wrote her back and told her that she was my hero. Click HERE to go to Kelsey's website to not only view her photos, but also be amazed at the amount of large clients she is responsible for.


Last Thursday, I was unable to go to work out because Laura's physical therapy assistant (PTA) was on vacation that week and Laura was there literally by herself. Most physical therapists can work with multiple patients at the same time because they can get someone started doing an exercise and then while they are working, the therapist and go to another patient and help them. When Laura works with me, she spends the entire hour with me. Even though she tried to rearrange her schedule so that I could go in for my workout, we both agreed that it would be easier for her if I skipped a week and resumed my normal schedule this week. I was excited to go back and workout with her because I honestly enjoy my physical therapy sessions. For the next eight weeks, Laura is going to have a physical therapy student working alongside her. All physical therapy students go through a sixteen week hands-on work program before they take their boards to become certified. When I got there on Thursday, Laura and her student, Miles, worked out with me. Since it's been nearly four months since my last injection of Spinraza, I've been anxious to see how my body was going to react. I was somewhat scared that my energy level may fall since it's been nearly four months since my injection, but to my surprise, my energy level has maintained itself and I feel great. My workout went great. All of my muscles felt strong, except for my neck muscles. The muscle that keeps my head from falling forward is still extremely weak. The other muscles in my neck seem to be getting stronger. The muscle in my neck that keeps my head from falling forward is the muscle that will require quite a bit more attention. I know that this particular muscle will grow in strength over time, I just have to be patient and understand that it's going to take a longer period of time to get this muscle in the shape that I would like it to be. I've never really been a patient person, but since I have no control over this, I'm at the mercy of something that is far more powerful than my wishes.


This coming Monday, July 9th, I go back to UT Southwestern Medical Center for my second maintenance dose of Spinraza. The hospital called me on Thursday to confirm my appointment and I'm scheduled to go in at 11:30 in the morning for my bloodwork and urinalysis, and the procedure is scheduled for 1 o'clock in the afternoon. While I'm not necessarily nervous about the procedure, I am anxious to get there so I can receive the protein that my body is craving. I guess you could say that I'm kinda like a junkie looking for a fix, only the fix that I'm looking for is completely legal. I have so much to be thankful for, and if you are also receiving your injections, I hope and pray that you are as thankful as I am.


In this week’s video, I’m giving my subscribers and followers an update with regards to what I’m doing now, and what I have planned over the next couple of weeks. With the amount of work that I had to do for the 2018 Annual Cure SMA Conference, I thought that this would be a good time to do a video updating what is happening in my life. I was recently asked to be a part of a magazine article that was going to be written in Health Monitor Magazine, and I also discuss the photo shoot that I went through with a professional photographer. Along with this, I also discuss my upcoming maintenance dose injection of Spinraza. I am scheduled to receive my maintenance doses every April, July and November of each year, and I’m excited about going into the hospital this coming Monday, July 9th to receive my next injection.  Click HERE to view my video.


In next Sunday's video, I will be giving everyone an update as to how my injection went, and I will also share my bloodwork and urinalysis results in the video, and on my website. I hope everyone had a fantastic week, and I hope that the following week will be better than the previous. Do something for yourself this upcoming week that's going to make you a better person. Until next Sunday, God bless.