Monthly Journal - June (2019)

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Monday, June 10, Through Sunday, June 16  - This past week, everything fell into place like it should have, but the week seemed to have gone in slow motion. Each day was normal with regards to my normal work routine, but the more that I wanted the week to come to an end, it was like everything was moving at a snails pace. It seems funny to me how one week will go so quickly, and the other week will just drag on and never come to an end. Even though the we felt as if it was moving extremely slow, I muddled through and made it without any major problems or difficulties.


This past week, when I went for my workout with Emily, she and Vicki transferred me from my wheelchair to the therapy table. My normal workout routine starts out with my balance exercises, once I get positioned on the therapy table. Now that Emily and Vicki are having me sit on a cushion, it takes just a little bit longer for me to get positioned properly, but it seems to be getting easier each and every time that we do it. Normally, Emily will be behind me and Vicki will be standing in front of me. Emily usually starts out by pushing me forward's, backwards and from side to side, and these type of exercises are called perturbations. This act of throwing my balance off, forces me to utilize my core strength to remain in an upright seated position. Last week, if you read my journal entry, I said that Emily and Vicki were going to start using resistance bands to increase the difficulty level of these particular exercises. Once I gained my balance on the cushion on the therapy table, Emily did start out doing her normal perturbations, but after about 5 minutes, she switched over to the yellow resistance band. With Emily standing behind me, she placed the yellow resistance band around my chest. I thought we were going to do isometric exercises, where she pulls me backwards and I would have to maintain my balance and sit straight up. Instead, Emily had me work my core strength by doing crunches. After leaning forward just a bit, Emily would start pulling back on the resistance band, trying to bring back up into a neutral sitting position. I would then sit back up as straight as possible, and then lean forward utilizing my core strength to pull against the resistance band. At first, this was extremely difficult, but after doing this for a couple of minutes, I found it to be a great workout for my abdominal muscles. We worked on this for about 10 minutes. At one point during these exercises, I leaned a little bit too far forward and lost my balance. Luckily, Vicki was standing in front of me, and she grabbed me before I fell. Even though I know that Vicki is front of me, it was still quite scary to lose my balance, and a huge sense of relief was felt when she grabbed me. After sitting me back up into an upright position, both Vicki and I looked at each other, and I wished I would've had a picture of this moment. We both looked extremely shocked, but relieved that nothing bad happened. Emily grabbed me by my shoulders and was apologetic, because she was unable to grab onto me. This is when the true test of trust comes into play. I trust both Emily and Vicki to not let me fall, and this trust level increases each and every week. After working with the resistance band for about 10 minutes, Emily and Vicki laid me down on my back, and Emily began the range of motion and stretching exercises on my hips, legs, knees, ankles and feet. After this, Emily worked on my neck muscles by rotating my neck to the left and to the right. This particular exercise feels very good, because it stretches the muscles in my neck and my trapezius muscles that run from my neck to my shoulder. To finish my exercises, Emily and Vicki set me back up on the therapy table, and we used the yellow resistance band on my side to side exercises. Emily sat on the therapy table to my right and put the resistance band around my left shoulder. After this, I leaned just a little bit to my left, and Emily began providing resistance with the band, which would pull me back up into an upright position. My job was to lean to my left and push against the resistance band, which worked the oblique muscles. While Emily was sitting on my right side, Vicki was there on my left side, making sure that I would not lose my balance. After doing my right side, Emily transferred to my left side and we worked by having me lean to my right. After this, Emily and Vicki transferred me back to my wheelchair and my workout session was over.


I've updated the flash briefings that I do for BioNews Services. Click HERE to go the flash briefings.


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 soon.

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Monday, June 3, Through Sunday, June 9 - With last week being as busy as it was, this week, was the complete opposite. Other than my daily work for BioNews Services, the only time that I left the house was when I went for my workout with Emily. Other than that, I've been secluded in my home office, with the door shut recording flash briefings and podcasts. I can actually say for the first time in a long time, that I miss human interaction. It's funny how fast the week went, because spending days recording articles that are newsworthy along with editing these files and putting everything together, takes quite a bit of time, and this time went much faster than I thought it would.


This past week, when I went for my workout with Emily, we did my 4 week reevaluation. Emily took all of the measurements that we needed for this reevaluation in about 30 minutes, so we had the remainder of the hour to work on core strengthening. Overall, my reevaluation went very well. I posted my reevaluation results for the past 2 months on my website.  The part of the reevaluation that excites me the most is how much I'm able to stretch my legs out. When I first started, my right leg had over a -40° bend. Now, my right leg is it -19°, and my left leg is it -21°. This is quite an improvement since I began. The rotation in my neck seems to be better, and I'm able to look further to my left and to my right. Even though these numbers may not change dramatically from week to week, this is not necessarily meant to be dramatic changes. Most people with SMA get weaker as they get older, and with getting weaker, they lose the ability to rotate their neck and to function as the use to. The purpose of these exercises then we go through are meant to maintain my numbers and to possibly improve. As I said, my numbers may not be getting dramatically better, but they are at least improving and slow increments. Click HERE to view my test results. Next week, when I go for my workout with Emily, she and Vicki will transfer me from my wheelchair to the therapy table and we will do the range of motion and flexing exercises on my hips, legs, knees, ankles and feet. While I enjoyed every aspect of my physical therapy, transferring to the therapy table is the part of my therapy that I really enjoy the most. Next week, instead of me just sitting on the cushion on the therapy table and having Emily push me forward, backwards and from side to side, she's going to begin using the yellow resistance band so that we can do more isometric exercises to improve my balance. While sitting on the cushion on the therapy table, Emily will stand behind me and put the yellow resistance band around my chest. She will then slowly begin pulling me backwards, and my job will be to maintain my balance and stay in a neutral sitting position. Emily will also stand in front of me and put the yellow resistance band around my back, and pull me forward toward her. Again, my job will be to remain in an upright neutral sitting position. While this sounds easy, it doesn't take a lot to throw my balance off while I'm sitting on this cushion, so I know that these exercises are going to provide a great challenge along with a great workout on my core muscles. I actually made the suggestion to Emily a few weeks ago, and she said that this would really be a great challenge for me. As my balance and my core strength improves, we will move from the yellow resistance band, the one that has the least amount resistance, to the other colored resistance bands that provide a greater amount of resistance. While this may take some time, I can truly see benefits with my balance and my core strength, so I'm looking forward to this new exercise.


In this week's video, I go over the key differences between AveXis's treatment known as ZOLGENSMA, and Biogen's treatment known as Spinraza. Surprisingly, there are quite a few differences between these treatments and how they react in our bodies. While ZOLGENSMA was the 2nd FDA approved treatment for SMA, it's actually the first gene therapy that has the FDA stamp of approval. These 2 treatments that I talk about in my video, give those of us with SMA a great deal of hope for our future. In the description of my video, I provide a link to a YouTube video that I found nearly a year ago that goes into great detail regarding how Spinraza repairs the SMN2 gene. This is a fascinating video that I think all of you will enjoy watching. Click HERE to view that video. I also provide 2 other links from articles that BioNews Services wrote regarding the FDA approval of ZOLGENSMA, and another article that discusses what ZOLGENSMA does in our bodies. Click HERE to view the article regarding the FDA announcement, and click HERE to view the video that discusses how ZOLGENSMA works. Click HERE to view my weekly video. The next therapy coming down the pipeline is Risdiplam, and I'm going to go into great detail regarding this potential treatment in the next few weeks. While there may not be a possibility of a combination therapy between ZOLGENSMA and Spinraza, the likelihood of a combination therapy between Spinraza and Risdiplam may be something that we can look forward to. Risdiplam, like Spinraza, works on the SMN2 gene, and there is quite a bit of talk around the grapevine regarding these 2 therapies working together to provide benefits for those of us with SMA.


I've updated the flash briefings that I do for BioNews Services. Click HERE to go the flash briefings.


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 soon.