Monthly Journal - April (2019)


Monday, April 15, Through Sunday, April 21 - Like last week, this week was extremely busy and also very productive. I had a wonderful opportunity to speak to one of my subscribers along with his son, who is about to go through his first Spinraza injection. I was able to speak to both he and his father had along with learning his background with regards to his life while living with SMA, I got to share my experiences from the treatments that I have already been through. They wanted to know what to expect and we also discussed at great length the benefits of physical therapy. I could hear the excitement in both the father's and the son' s voice. The son was extremely excited about this new venture that he was about to embark on, and his father told me that he thought that he would never see the day where there would be a treatment for spinal muscular atrophy. I can hear the emotion in the father's voice and I can tell you that it brought tears to my eyes. I wish my parents had been here when I started my treatments, but I know that they are looking down on me and I also know that they are both excited for my future. The father told me that they had been watching my videos since the very beginning, and he was so appreciative of the work that I had put into doing in my videos and the information that I shared. Looking back on it now, it's moments like this, where someone tells me how valuable my videos have been, makes the effort that I put into these videos worth everything. While I know that I will never have thousands and thousands of subscribers. The subscribers that I do have, mean everything to me, and I'm not only appreciative of the fact that my subscribers watch my videos, I'm thankful that the messages that I'm putting out on my videos are helping in some small way.

This week, when I went for my workout with Emily, Carl and Derrek transferred me from my wheelchair to the therapy table, so that we could do all of the range of motion and flexing exercises on my legs, knees, hips, ankles and feet. While some people may feel uncomfortable letting physical therapy students assist during their workouts, I actually enjoy the fact that students get to help me with my workouts. This is the only way that they are going to learn how to work with someone with spinal muscular atrophy. Given the fact that so many of us are now on active treatment, and with the upcoming approval of AveXis's drug, ZOLGENSMA, more and more physical therapists are going to be seeing more SMA patients in their facilities. What better way to learn about how to work with someone with SMA, than hands-on experience. While Emily was there to assist, and to oversee what was happening, Carl and Derrek did the majority of my exercises, and I know that both of them are going to make great physical therapy assistants when they graduate.

My exercises seem to be getting easier as I go through each week. My stamina and my ability to recover quicker with regards to my levels of strength, seem to be improving. While I know the benefits of Spinraza, I'm also very well aware of the fact that my physical therapy has been extremely important to my overall conditioning. While working on my balance exercises this past week, Carl was standing behind me and Derrek was standing in front of me. With Carl pushing me forward, backwards and from side to side, I felt stronger with regards to my balance that I ever have. I jokingly told Carl, while he was working with me on this exercise, was that the best that he could do with regards to pushing me. I heard Emily groan in the background, and it wasn't much longer, when my joke turned into reality. Carl started pushing me with quite a bit more strength and aggression, and the rest of my workout was quite difficult. While we all got a big laugh out of it, I'm the one who ultimately paid the price for my big mouth. I've stated this numerous times, and you would think that I would learn my own lesson, but if your mouth is going to write a check that your butt has to cover, you better be careful about what you ask for. After finishing my balance exercises, Carl and Derrek laid me down on my back and began working on the range of motion and flexibility exercises. While my feet were slightly swollen, they weren't as bad as they had been. One of the more beneficial stretching exercises that we do is when they take my knee and pulled up to my chest and rotate by hip to the opposite side. This really works the hamstring muscle along with the muscle on the side of my hip. While these exercises may not be comfortable to go through, I can really tell a difference once I get back in my wheelchair. My right hip doesn't hurt me at all, and usually the relief that I feel in my right hip lasts for about three or four days. After finishing all of my range of motion and flexibility exercises in my legs, Carl began stretching my neck and working on the rotation and range of motion with regards to me being able to look to my left and to my right. He spent quite a bit of time on the trapezius muscle which is located between your neck and your shoulder, in this stretching exercise is excellent to do to help relax this muscle. After we finished all of the exercises in my neck, Carlton and Derrek set me back up into a seated position on the edge of the therapy table and we worked with the therapy ball while I leaned to my left and my right. We did a couple of sets of reps with the therapy ball, then Carl and Derrek transferred me back to my wheelchair.

On Thursday, April 18, I went back to my pulmonologist for my six-month evaluation. When I went to the pulmonologist in October, 2018, they performed a pulmonary function test (PFT). The numbers that they got during my first evaluation would be the base numbers that they would compare to the results of they got this past week. While most pulmonologists like to see an increase in lung volume and Lyme strength, the majority of them will tell you that any growth, no matter what the number, is good for patients with neuromuscular diseases like SMA. When I went to see Doctor Lee on Thursday, and after they performed the pulmonary function test on me, Doctor Lee read the results. He told me that my lung volume increased from 42% to 48%, my inhale test, (MIP), improved from -47 to -50, and my exhale test (MEP), improved from 25 to 40. Doctor Lee was extremely excited about the increase in my exhale test, and he was so surprised with these numbers, he had me take the test again just to verify that the respiratory nurse was getting correct numbers. The second test came out to be the same as the first. Doctor Lee told me that he was extremely happy with my results, especially given the fact that the normal increase should be in the single digits. He wanted me to start working with my cough assist machine and work on letting it help me inflate my lungs to a higher level. He told me that he wanted me to do this once a day for the next six months, to see if my numbers improve even more when I go through this test again. Doctor Lee told me that he expected my numbers to improve slightly, but not to these levels. He told me that my physical therapy was probably the reason why my numbers improved the way they did. I came out of Doctor Lee's office feeling pretty good about myself, knowing that what I'm doing regarding my treatment and my physical therapy are working.

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.


Monday, April 8, Through Sunday, April 14 - This is been an extremely busy and productive week. Since doing my last video a few weeks ago, nothing dramatic has changed in my life, and sometimes it feels like I'm stuck in the movie Groundhog Day. One day kinda feels like the next, with a few changes sprinkled in for good measure. My overall energy level has been excellent and there's a lot of excitement in the air with regards to new and upcoming therapies that could be approved by the FDA in the not so distant future. As soon as Spinraza became available as the first treatment, our lives have been extremely busy with everything that's happening since starting our treatments. Now that the majority of us have been on active treatment for the last year or so, I feel that my days are becoming more predictable, which definitely makes it easier for me to plan what I'm going to be doing.

This week, when I went for my workout with Emily, she and her two physical therapy students, Carl and Derrek, performed my four week reevaluation. They took all of the measurements, and we were quite surprised regarding the results, compared to when I started doing some of these exercises back a few months ago. They started out by measuring the negative degree bend in my legs. When we started doing these exercises during the first part of October 2018, my left leg had a -27° curve, and my right leg had a -40° curve. Now, my left leg is it -18° and my right leg is it -21°. This is a substantial amount of improvement, because therapists consider 0° to be perfectly straight. While I may have only improved by 9° in my left leg, I've improved by 19° in my right leg. My dorsiflexion in my feet have improved slightly, but we have a long way to go. My left foot, back in October 2018, was it -34°, and my right foot, back in October 2018, was it -28°. Now, my left foot is -30°, which is a 4° improvement. My right foot, back in October 2018, was at -28°. Now, my right foot is at -37°. My right foot tends to swell and have substantial edema around the ankle, which hinders my foot from being able to flex back upward toward my body, so I'm not seeing as much improvement as I would like in my right foot, but I know that after the swelling goes down, this should improve. The rotation and side bending in my neck have remained around the same numbers since starting these exercises in October 2018. I'm able to look to my left at 26°, and I'm able to look to my right it 22°. These were approximately the same numbers that I had when starting these exercises, so Emily and I are hoping that these numbers will improve as time goes on. While testing my abdominal muscles, Emily did say that I have shown improvement in all three ranges of these measurements. She measures me first when I'm leaning around 45°. Once in position, Emily will pull me up with her hands and my job is to resist her from pulling me back up into a seated position. We also do this when I'm leaning at 30°, and at 20°. I haven't improved as much as what we would like when leaning a 20°, but again, this will take time. Emily stated that I've improved on my side to side exercises as well. I'm able to lean further to my left and to my right and get back into a seated position without assistance, and much of this is due to the strengthening in my core. Overall, my measurements improved with the exception of the dorsiflexion in my feet. After finishing all of these measurements, Carl and Derrek helped me do the rest of my core strengthening exercises with the time that we had left. One of the most important exercises that I do with regards to my core is the isometric exercise on my back. Both Carl and Derrek sat in front of me and put the resistance band around my back. Once in position, they pulled me toward them and my job is to keep my back flat against the back rest of my chair. We do this for a total of two minutes, which really works my abdominal muscles well. This exercise has been beneficial with regards to me being able to lean back in my chair while I go down the ramp in my van. I no longer need anybody to put their hand on my chest to keep me from falling forward. We also use the resistance band on my neck exercises as well. The only difficult part of this exercise for me, is when they are pulling my head forward. They place the resistance band around my head, and while sitting in front of me, they pulled the resistance band toward them which forces my head to go forward. My job is to keep my head in a neutral position without falling forward. We have noticed some strengthening in this exercise, and we will slowly be adding stronger resistance bands as I improve. Next week, I will transfer out of my wheelchair back to the therapy table so that we can work on the range of motion and flexing exercises on my legs, knees, ankles, feet and toes.

In this week's video, I talk about the upcoming approval from the FDA regarding AveXis’s drug ZOLGENSMA. Even though we anticipated the approval around the end of May or 1 June, I discussed my gut feelings regarding when I think ZOLGENSMA will be approved as the second FDA approved treatment for those of us who suffer from spinal muscular atrophy. My opinions are my own, but I’m usually correct when it comes to listening to my gut feelings. Along with sharing my opinions regarding the upcoming approval, I also give you some advice on what to do so that you can make an informed and educated decision as to whether or not you would eventually want to receive this particular treatment.  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 in a few weeks.  (Don't forget, I'll be posting my journal each week, so be sure to keep checking each week.)


Monday, April 1, Through Sunday, April 7 - While I'm only going to be doing a video every other week, I do want to keep my weekly journal up to date, so I will try my best to update this weekly journal each and every week so that those of you that are following me can keep up-to-date with what's happening. This past week was pretty uneventful, compared to most. My work with BioNews Services is keeping me busy, and we are slowly growing our multimedia products throughout the various forums that we run. We recently launched the Lou Gehrig's Disease (ALS) forum, and since launching this forum on Tuesday, April 2, we have seen tremendous growth with regards to number of page views and the number of new members who signed in and created IDs. With all of this happening, I still met with Emily for my workout, which I'll talk more about in just a moment. I'm still taking my antibiotic for my prostatitis, but quit taking the pain medications a few days after I started the antibiotic. I'm not one of those individuals that likes to stay on pain medications for a long period of time, especially if I don't need them.

Last week, when I went for my workout with Emily, she had two students there were going to be working with her. Emily asked me if I would mind if the students transferred me from my wheelchair to the therapy table, but she also said that she would be there to monitor and make sure that everything went safely. Carl had been working with Emily for the past few weeks, and he also worked with me on my exercises as well. Derrek had been there a couple of weeks, but this was the first week that he would work with me along with Carl. After transferring to the therapy table, we worked on my balance exercises. With Emily standing in front of me, on my right hand side, Carl started working behind me and Derrek was in front of me to make sure that I wouldn't lose my balance. Carl began pushing me forward, backwards and from side to side and we did this for about 10 minutes. After this, Derrek went behind me and Carl came and stood in front of me. It was now Derrek's turn to help me with my balance exercises. By working with therapy students, I'm able to explain the benefits of working with someone with spinal muscular atrophy, and I told the both of them that if they were in the business long enough, they would probably see more patients with SMA, given the fact that so many of us are on active treatments. After working nearly 15 minutes of my balance exercises, they laid me down on my back and began working on the range of motion and flexing exercises that we do on my knees, legs, ankles and feet. Emily had already worked with Carl on this a few weeks ago, so she instructed Derrek on what to do and Carl and Derrek began stretching me out. My right hip had been hurting for a few days before, so they focused quite a bit attention on my right leg, especially when it came to the hamstring and quadricep muscles. They took my right knee and pulled it close to my chest, and then shifted my knee toward the left side of my body, this stretched out that muscle in my hip along with my hamstring and quadriceps. While I wasn't necessarily comfortable during this exercise, afterwards, my hip felt much better. Emily is happy with the range of motion that I have in my hips, because many people with SMA have hip flexing problems that you have due to sitting in a wheelchair for a long enough period of time. After finishing the range of motion and stretching exercises on my right leg, they focused their attention on the range of motion in my ankles and feet. With my feet close to my body, they applied downward pressure on my knees which flexed the muscles in my calves. Once they finished with this, both Carl and Derrek had the opportunity to work on flexing my neck from side to side. This exercise is extremely relaxing to me. Sitting in my wheelchair, I have the weight of my head that makes it difficult to look too far to my left and my right, but by laying on my back, the weight has been dispersed and they are able to get better range of motion and flexibility. I really enjoy doing this because it's not only relaxing, it's also like getting a neck massage during physical therapy. After finishing with my neck, Carl and Derrek set me back up in a sitting position and we took the therapy ball and worked on my balance exercises while I leaned to my left and my right. This is still a new part of my exercise routine, and while it is a bit more challenging, I'm finding it easier each and every week.

The one thing that I will try to do each and every week is to update my website so that I can include the flash briefings that we do during that week. We do three flash briefings per week, one on Monday, Wednesday and Friday. These are the multimedia files that I'm bringing to the other forums that BioNews Services runs. Given the fact that the company has purchased a professional grade microphone and pre-amp for me, the quality of my recordings have really improved. While they say that I have a face for radio, this advanced equipment also makes my voice sounds substantially better.

 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.