Monthly Journal - July (2018)

Monday, July 30, Through Sunday, August 5 - This is been an amazing week for me. It's been one of those weeks where everything fell into place. Along with having a wonderful week, I received a job offer that I could not refuse. I will detail my new job a little further down in this journal.


When I went to workout with Laura on Thursday, we began by doing my new exercises with the resistance band on my neck muscles. We got the hardest exercise out of the way, which was the one where Laura would put the palm of her hand on the back of my head and pushed my head forward. We're not using resistance on this particular exercise because this muscle is still underdeveloped. Overall, I did pretty good on this exercise this week. I had to stop quite a few times and rest my neck, but after resting for about ten to fifteen seconds, the muscle recovered and we were able to continue the exercise until we completed all the repetitions. The exercises that we did with the resistance band on my neck muscles went well. I can actually tell the difference in the way that my muscles feel in my neck since starting these exercises. All of my other exercises went well and surprisingly, I wasn't as fatigued as I usually am after my workout.


As most of you are probably already aware of, I have been creating YouTube videos for a company by the name of BioNews Services LLP for the past three months. Along with creating two YouTube videos per month for them, I also create weekly podcasts for Flash Briefing series that they put on their Amazon Echo devices every Monday. About a month ago, one of the owners of BioNews sent me an email asking if I would like to get further involved with their company. I wrote him back and told him that I would be interested in getting further involved. On Monday, July 30, I received an email requesting a conference call with the owner of BioNews. We scheduled this conference call for Tuesday, July 31. I was expecting them to ask me if I would be interested in producing an additional video or maybe adding a few more podcasts each month. To my surprise, the owner of BioNews offered me a full-time position with their company. After speaking with Chris, the owner, I am now the new manager of all of their discussion forums for BioNews. Their discussion forums are where individuals can go and ask questions and answer questions from those who have certain diseases and illnesses. The following is a list of the different discussion forums that I am now managing:


  • Spinal Muscular Atrophy (SMA)
  • Multiple Sclerosis
  • Parkinsons Disease
  • Pulmonary Fibrosis 
  • Pulmonary Hypertension
  • Friedreich's Ataxian (Coming Soon)

Each individual forum have one or two moderators, and their job is to ensure that all newcomers are welcomed and that their questions are responded to in a timely manner. My primary responsibilities are to ensure that the moderators are keeping up with all of their assigned tasks, and to also improve the amount of traffic that is generated on each of these individual forums. As each forum continues to grow, advertisers will begin placing their ads on our forums, which will then generate more income for the company. I am also responsible for generating all of the analytics, which is all of the statistical data showing progress and changes that occur on a weekly basis.


In this week’s video, I discuss how early Spinraza treatments improved the outcomes of children with SMA. A recent study performed in Germany, reported substantial increases in the amount of SMN2 protein in children who were administered Spinraza treatments early in their life. I go over the results of this study, explain how this study works, and the benefits that were achieved. I’m asking everyone who watches this video to please take time out of your day to contact your local congressman, senators, and the governor of the state in which you live, and urge them to include SMA in all newborn screenings. Currently, there are approximately four to six states that currently test newborns for SMA. We need to express our feelings and let those, who have the power to make these changes, understand that we want SMA to be part of newborn screenings in all fifty states. If we make our voices heard, we can accomplish this very important task. Please do your part by writing a few letters, so that we can be a voice for those who are too young to speak for themselves. If you live outside the United States, you too can make a change in the country that you live in. Given the amount of children that are born with SMA each year, this is a global issue that will require a global response from people like us. Click HERE to view my video.


I did a podcast this past week were I discussed the importance of adding SMA to the newborn screening list in all fifty states. While there are a few states that have already started screening for SMA on newborn testing, there are many more who have yet to follow suit. Adding a disease to this newborn screening list s a difficult process, and even though SMA has been added to the national list of diseases to screen for in newborns, it must also be adopted by each individual state. Surprisingly, some states are going to be extremely slow in adding this to their list. Please take time out of your day to listen to this very important podcast because this subject is very dear to my heart. Click HERE to listen to my podcast.


I hope everyone had a fantastic week and I hope your upcoming week is 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.

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Monday, July 23, Through Sunday, July 29 - It seems as if it is either feast or famine with regards to how my week is going to go. After finally getting all the repair work done on my house, I thought this week was going to be somewhat quiet. To my surprise, this wasn't the case. As I sit here writing my journal, I'm staring at the other desk that's in my home office and I have three stacks of mail that I have to go through in the next few days. Since I pay all my bills online, I know I have nothing due, it just seems a little depressing to know that I have not yet opened all my mail.


Everything went great with my workout on Thursday with Laura and her physical therapy student, Miles. Like usual, we started working out on my neck muscles. I feel after the past few weeks, the muscles that keep my neck from falling forward seem to be a little stronger. After we finished all my exercises, Laura had a few new exercises for us to try on my neck muscles. The exercises were more isometric in nature. Laura took the yellow resistance band and put it on my forehead. While standing behind me, she pulled back and had me pull my head forward while she applied resistance. While my head was in the forward position, I had to slowly allow my head to go backward toward Laura. We did a total of ten repetitions. While I was doing these, I thought to myself that this exercise seemed very easy to do, but when I got to the fifth repetition, I could feel the muscle in my neck starting to quiver. The last five repetitions were difficult to do. Laura even made the comment that she could see the muscle in the back of my neck tightening up. After the first ten repetitions, and after resting for about fifteen seconds, we did another set of ten repetitions. After repeating this exercise for a total of twenty repetitions, we did the same exercises bending my neck to the left and to the right. Since the muscle in the back of my neck that controls my head from falling forward is still slightly underdeveloped, Laura is going to continue using the palm of her hand on this particular exercise. She told me that when this muscle starts to develop, we will then use the yellow resistance band on this exercise as well. As I start to build these muscles, we'll move to a stronger resistance band.


I did a podcast this past week were I discussed the importance of adding SMA to the newborn screening list in all fifty states. While there are a few states that have already started screening for SMA on newborn testing, there are many more who have yet to follow suit. Adding a disease to this newborn screening list s a difficult process, and even though SMA has been added to the national list of diseases to screen for in newborns, it must also be adopted by each individual state. Surprisingly, some states are going to be extremely slow in adding this to their list. Please take time out of your day to listen to this very important podcast because this subject is very dear to my heart. Click HERE to listen to my podcast.


In this week’s video, I discuss the link between circadian rhythms and spinal muscular atrophy. Circadian rhythms are the way that our body reacts biologically over a 24-hour time period. These circadian rhythms not only control how we sleep, they also control how we feel for the entirety of the day, from the time that we wake up in the morning, until the time that we go to bed at night. A recent study was conducted where researchers linked the negative side effects of circadian rhythms to those of us who have spinal muscular atrophy. Some of the results that these researchers found during their study were quite surprising.  Click HERE to view my video.


I hope that all of you have had fantastic week and I hope your upcoming week will be better than the previous. Do something for yourself this upcoming week that is going to make you a better person. Until next Sunday, God bless.

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Monday, July 16. Through Sunday, July 22 - Overall, this past week went pretty well. I finished all of the repairs on my house with regards to getting my new roof put on and getting all of the gutters replaced around the house. It's amazing how much damage a five-minute hailstorm and cause. The only thing I have left to do is to get my fence power washed and re-stained. After that, Humpty Dumpty should be back together again.


Since I had contractors all over my house on Thursday, I went to workout with Laura on Tuesday. Her student therapist, Miles, worked with me on all of my exercises. Laura was there with us, but she let Miles go through all of the exercises, to give her some experience on how to work with me. We usually work out for about an hour, and it seems this hour goes by so quickly. It felt like we had barely started when it was time for me to leave. I guess concentrating on everything that I'm doing makes the time go by much quicker. My energy level and my physical strength have been fantastic. It's been nearly two weeks since my last treatment. I didn't see any decline in my physical strength and conditioning during the four months after my first maintenance dose, which actually surprised me because I thought I would possibly lose a little bit of my energy due to the fact that it had been four months since my last injection. I'm excited to see what the next four months have in store for me. I hope that my conditioning will continue to increase since my last injection a few weeks ago. One of the biggest changes that I've seen has been in my breathing. I'm able to speak louder and longer without becoming winded. My friends and family have even told me that they noticed quite a change in the last four months. They can all tell that my breathing is better and they even mentioned that I'm speaking in longer sentences now. I thought I was seeing improvement, but when your family and friends tell you that they see improvements, it confirms my notions that my treatments and my physical therapy have probably put a halt to the progression of my disease. I've stated many times that if this treatment doesn't do anything for me but to stop the overall decline, and to level me off where I will not get any worse, then I will count my blessings and thank God for everything that has occurred. I did a podcast the other day where I talk about some of the changes that I've noticed regarding my physical condition. This was one of the questions I answered, and I also answered another question regarding whether or not all of the frustrations that I went through while getting approval to begin my treatments was actually worth everything that I went through. Click HERE to listen to this podcast.


In this week’s video, I’m introducing everyone to a company by the name of PTC, and I’m also discussing their oral therapeutic that they call RG7916. PTC’s goal, through RNA splicing, is to get the SMN2 gene to produce more functional SMN protein, so that those of us who are suffering from SMA cannot only sustain the muscle that we currently have, but to also build new muscle. RG7916, so far, has been well tolerated and has shown some promising results. Since those of us with SMA do not have the SMN1 gene, we rely on the SMN2 gene to provide our bodies with a protein that we need. With the development and possible success of PTC’s RG7916, those of us with SMA would have a brighter future. Click HERE to view my video.


I hope that everyone is had a fantastic week, and I hope your upcoming 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.

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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.