SMA News Forums Forums Treatments and Research Zolgensma (onasemnogene abeparvovec) My Weekly Journal – 05/27 Through 06/02

  • My Weekly Journal – 05/27 Through 06/02

    Posted by michael-morale on June 3, 2019 at 3:00 pm
    Monday, May 27. Through Sunday, June 2 – I can sum up my week with three words: sleep, eat and work. You could also throw in a little bit of fun and excitement, but for the most part, those were the three things that I did for the majority of this past week. Much of my time was spent around the recent approval of ZOLGENSMA by the FDA. The company that I work for, BioNews Services, has produced some excellent articles regarding not only the FDA approval of ZOLGENSMA, but also how ZOLGENSMA works in our bodies. In my video that I produced for Sunday, June 9, I not only detail the differences between ZOLGENSMA and Spinraza, I provide some important links in the description of my video that I think you will find fascinating, so make sure you watch next week’s video.
    This past week, when I went for my workout with Emily, she and her assistant Vicki, transferred me from my wheelchair to the therapy table. As I stated in my journal last week, instead of sitting flat on the therapy table while we work on my balance exercises, Emily now has me sitting on a cushion. This cushion, throws my balance off enough to where it makes it very difficult for me to remain in an upright seated position. By sitting on the cushion, Emily doesn’t have to push me nearly as hard to get me to lose my balance. By making this exercise more difficult, it’s really working on my core muscles like my abdominals, oblique’s, back and neck muscles. I provided a few pictures of me sitting on this cushion while we worked on my balance exercises.
    While we worked on my balance exercises, we also took pictures. Emily is producing her 2nd article for the SMA News Today HCP site. This HCP site is a website that BioNews Services has set up for their SMA healthcare professional articles. We took pictures of me doing my balance exercises and I put these pictures into a short 2 minute video that further explains why we are doing these exercises and what muscles we are trying to improve. I will also put a couple of these pictures into the article itself along with the video. This article should be out on the HCP site this upcoming week.
    After doing my balance exercises, Emily and Vicki laid me down on my back and Emily began working on the range of motion exercises on my legs, knees, ankles and feet. These flexing and range of motion exercises are really helping to not only loosen the hamstring and Achilles tendons, they have also improved some of the damage that’s in my right hip. The muscles in my right hip and buttocks have deteriorated to the point to where I’m now sitting on bone, and by sitting on bone, I’m also sitting on some of the nerves. By stretching the muscles that run along my right hip, it’s definitely improved the way that I feel throughout the week.
    Along with stretching my legs out straight, Emily is also bringing my knee up to my chest and rotating my hip to further stretch this muscle that runs along the side of both my hips. After finishing the flexing and range of motion exercises, Emily worked on the trapezius muscles in my neck by pushing my shoulder down and pulling my neck to the side. This is helping to not only loosen these muscles in my neck, but it’s also providing some relief that I feel as I sit in my chair throughout the day. I’ve noticed that the muscles in my neck and my shoulders feel better after doing these exercises.
    After working on the muscles in my neck, Emily and Vicki sat me back up on the therapy table, and I use the therapy ball to leaned to my left and to my right. I have to lean is far to one side as possible, and with my arm on the therapy ball, this works the oblique muscles in my sides. After doing all of my exercises, and after Emily and Vicki transferred me back in my wheelchair, Emily told me that when we do my balance exercises in a few weeks, instead of her pushing me forward, backwards and from side to side, she’s going to start using the yellow resistance band so that we can also do some isometric exercises on the muscles in my back and my core. While sitting on the therapy table, Emily will stand in front of me and put the resistance band around my back. She will then pull me toward her, and my job will be to remain in an upright seated position without losing my balance. She will also do this while standing behind me, my putting the resistance band around my chest and pulling me backwards. After this, we will also work on me pulling against the resistance band which will also work these core muscles. The yellow resistance band is the least resistance band that they have, and I will slowly move from the yellow resistance band to the green, blue, red and possibly black resistance band as I improve these muscles. These isometric exercises will take a long time for me to be able to perform, but this is just the next step in my exercise routine.
    I do have a little bit of disappointing news. Over the past 4 to 6 months, I’ve been looking into purchasing a new electric wheelchair. The one that I have now is nearly 20 years old, and while it’s still an excellent chair, I wanted to look into a chair that would allow me to recline backwards and possibly get some of the pressure off my hips. The company that I’ve been working with provided me a demo chair for me to use. They came out the first time and found that they had to make a few modifications to the chairs so that I could get more comfortable, but even after making these adjustments, I was only able to sit in this chair for about 15 minutes before my hips started hurting again. Unfortunately, as much is I want this new type of chair, I have to go with the chair that my hips will allow me to sit in, and while it may not be the chair that I want, it’s the only chair that I’m going to be able to sit in without getting uncomfortable. We’ve decided that we’re going to get another chair similar to the one that I’m in now, and while it may not be what I want, it’s the only thing that will work. Maybe over the course of time, and after I start building and repairing some of the muscle in my hips, I may, someday, be able to get into a chair that I can recline, and to get into different sitting positions. I am a little disappointed in this fact, but we do what we have to do to maintain our mobility and freedom.
    In next week’s video, I will be detailing the differences between Biogen’s treatment known as Spinraza, versus AveXis’s treatment known as ZOLGENSMA. I will talk about what each one of these treatments do in our body and the differences between how these treatments work with regards to those of us with SMA. Now that we have 2 treatments for SMA, there are probably quite a few of you who are wondering what the differences between these 2 treatments are, and my video next week, will hopefully explain these differences and clear up any confusion that you may have.
    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.
    michael-morale replied 4 years, 12 months ago 1 Member · 0 Replies
  • 0 Replies

Sorry, there were no replies found.

Log in to reply.