Monthly Journal - November (2018)

Monday, November 5, Through Sunday, November 11 - This has been one of those exceptionally busy weeks, where even if I had 36 hours in a day, I wouldn't have enough time to get everything done. Since I'm going back to the hospital this coming Monday, November 12, I've been hibernating and trying to stay away from everyone. I do this because if I go to the hospital with even a common cold or a sore throat, they may not do my procedure, so staying away from everyone assures me that I have the best opportunity to go to the hospital in as good a shape as possible. The only time that I ventured out of the house this entire week was when I went to workout on Wednesday with Laura.


I wanted to try to dedicate the last four days of the week so I could be by myself as much as possible, so I scheduled my workout for Wednesday of this week. When I got to Green Oaks Physical Therapy, Laura immediately transferred me out of my wheelchair to the therapy table and we began my exercises on my hamstrings, quadriceps, calf muscles, ankles and my feet and toes. Since doing these exercises consistently for the past three weeks, my hip has felt better than it has in a long time. Two weeks ago when I did my workout with Laura, my toes were pretty sensitive on my right foot for a few days afterwards. When I went in on Wednesday, Laura focused more of her attention on flexing my feet more than she did my toes, which was a big relief to me. After completing all my exercises regarding my legs and my feet, Laura began a new exercise on the muscles in my neck.  Laura's working on the muscles in my neck so that we can improve the range of motion as I looked to my left and to my right sides. Laura will place the palms of her hands behind my head with her fingers extended until they reached the middle part of my neck. She will then begin manipulating these muscles with her fingers so that she can loosen the muscles to help as she rotates my neck to the left into the right. In physical therapy, therapists measure the number of degrees of rotation you can turn your head to the left and to the right, and the number of degrees that you can bend your neck from side to side. Currently, I have 12° of rotation and 25° of side bending when looking to my right, and 28° of rotation and 25° of side bending when looking to my left. Click HERE to view some of the pictures that we took as Laura was working on the muscles in my neck. After manipulating these muscles with her fingers to try to get them to relax, Laura will then rotate my head to one side and then gently hold pressure on my head, keeping it rotated as far as possible. She will then rotate my head to the other side and gently hold pressure, keeping it rotated as far as possible. We're hoping that these exercises will allow me to increase my range of motion while looking to my left and to my right and it will also give me the ability to bend my head further from side to side. After finishing the exercises on the muscles in my neck, Laura then transferred me back to my wheelchair and we began the resistance band training on the muscles in my neck. These exercises are progressing each week. A few weeks ago, Laura was having to manually push my head forward with the palm of her hand because the muscles that control my head from falling forward were not as strong as the muscles that I had keeping my head from going backwards and from side to side. Now, instead of using the palm of her hand to push my head forward, Laura is now using the resistance band for this exercise as well. We're going to continue working on my legs and my neck for another month or so, then we will go back and work on the core muscles for a few months.


In this week's video, I’m going to discuss my 3rd maintenance dose injection of Spinraza, scheduled for Monday, November 12, 2018. I’m going to be giving details as to how I prepare for the procedure, and also discuss the typical routine that I go through with each injection. After this, I’m going to show a brief one minute video that I created from the pictures that we took when I went in for my workout this past week. Laura is working on the muscles in my neck to not only improve the range of motion with regards to rotation in my neck, she’s also working on improving the amount that I can bend my head from side to side. I also review my results from my previous reevaluation that was done on September 30. The numbers that I give in this video regarding the rotation and side bending motions in my neck should improve over the course of time, as we loosen these muscles to allow me better rotation. Click HERE to view my video.


I hope that all of you had a fantastic week and I hope that you do something for yourself this upcoming week it will make you a better person. Please say a prayer that my upcoming Spinraza injection goes well. God bless you and I'll see you next Sunday.

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Monday, October 29, Through Sunday, November 4 - Even though we've seen a little bit of inclement weather over the past few days, this week has been dry enough for me to get out of the house and run some errands without getting soaking wet. Now that summer has finally come to an end, temperatures are starting to settle into more of a fall like atmosphere. Instead of it being over 100°, our highs during the day are now in the upper 70s to low 80s, with occasional 50s and 60s. When I was younger, I never liked cold temperatures during winter, but, as I've gotten older, I'm finding that wintertime is becoming more enjoyable. My poor little air conditioning units run constantly during the summer, so hearing these turn off and not being used for a few days in a row is very nice.


Last week, when I went to work out with Laura, she asked me to come in on Friday because they were getting dressed up for Halloween. This week, due to a conflict in my schedule, I went to work out on Tuesday instead of Thursday. When I got there, Laura and her physical therapy assistant Emily, transferred me from my wheelchair to the therapy table and began the exercises on my legs and my feet. Since it'd been a couple of weeks since we had exercised my legs and feet, this particular work out was very uncomfortable to go through. I found myself cringing in pain more than I ever had, especially when Laura and Emily started working on my feet and toes. While this has always been an uncomfortable exercise to go through, this week seemed to be a little worse. I know that these exercises on my feet and toes are what I need to go through, but it still doesn't make it any more pleasurable. My left foot felt fine after work out, but my toes on my right foot, especially the fourth and fifth toe, seem to be somewhat tender all the way through Sunday. I'm not sure if Laura was pressing this side of my foot harder than she had in the past, but it felt like I had maybe pulled a muscle in these toes, and this tenderness persisted for a few days. Any time that you are trying to build muscle or if you are working on muscles, you tend to tear these muscles down so that they can rebuild. I'm not sure if this is what's happening with my toes, especially given the amount of tenderness that I felt for a few days after working out, but I'm hoping that these workouts will become more bearable as time goes on. I apologized to Laura for whining so much, and she just looked at me and told me that she thought that this work out would be a little bit more intense since it had been a few weeks since we had worked on these muscles. After working on my feet and my toes, Laura and Emily focused on my knees and the muscles in my calves. With my feet flat on the therapy table, they pressed down on my knees which not only exercised my ankles and my feet, it also worked on the muscles in my calves. After this, Laura began working on improving the range of motion in my neck. This is a new exercise that we're doing because I want to be able to look further to my left and to my right, and by stretching these muscles and working these muscles, Laura hopes to give me more range of motion. While laying flat on my back, Laura stood behind me and started manipulating my neck with her fingers and her hands. She slowly twisted my neck from side to side checking to see what kind of range of motion I had to begin with. She then took measurements, with the help of Emily, so that we can have some baseline numbers to go by in a few weeks to check to see if my range of motion had improved. After massaging the muscles in my neck and taking all of her measurements, Laura and Emily transferred me back to my wheelchair. Once back in my chair, Laura took the measurements of my ankles and my knees so that she could record these numbers like she did the measurements that she took on my neck. Next week, I will report these baseline numbers in my journal so that we can track any improvement that occurs in the coming weeks.


In this week's video, I answer two very important questions that my subscribers sent to my email. The first question involved whether or not those of us that are on active treatment with Spinraza will be able to take the Avexis drug, AVXS-101, if and when it gets passed by the FDA to become a treatment similar to Spinraza. The second question asked why AVXS-101 was only going to be available for infants with Type I SMA. They wanted to know if AVXS-101 was going to be available for those of us with SMA Type II and Type III in the future. After answering these questions, I give an update with regards to my physical therapy with Laura, and I also detail my plans for the upcoming week. Click HERE to view my video.


I hope that all of you had a fantastic week and I hope that you do something for yourself this upcoming week that will make you a better person. God bless you, and I'll see you next Sunday.