Monthly Journal - February (2019)


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.


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.