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My Weekly Journal – 12/31/18 Through 01/06/19
Monday, December 31, Through Sunday, January 6 – 2018 was full of surprises, both exciting and disappointing. The exciting surprises were how much better I fealt with regards to my core strengthening and my overall energy level, along with how much better I feel in general with regards to my future. The disappointing surprises were those moments in 2018 that caused me some concern. I was surprised at how weak I was after I got out of the hospital with pneumonia, but then realized that my recovery would’ve taken much longer if I hadn’t of been on Spinraza and hadn’t of been taking physical therapy. While it took me nearly 3 weeks to recover from my bout of pneumonia, my Spinraza treatments and my physical therapy allowed me to recover much faster. But, there were still a few days where I felt lethargic and weak, which actually surprised me. While these may have been a few depressing days during the year, my strength recovered quickly so that tells me that something is working in my favor.Like 2018, I will be going back for another year long series of physical therapies with Laura and her team of physical therapists. We do one week of core strengthening, then we do one week of range of motion and flexing exercises in my legs, hips, knees, ankles and feet. While I would actually love to take physical therapy every day, this is not a possibility. I will say though that doing these exercises on a weekly basis with Laura has definitely paid off and I feel much better. I’m looking forward to seeing what type of progress I make during this year, and both Laura and I are hopeful for great success. When I went to my workout this week with Laura, we worked on core strengthening exercises, which included my crunches, reverse crunches and my neck exercises. The muscle that controls my head from falling forward is slowly getting stronger, and this past week, instead of Laura pushing my head forward with the palm of her hand, she is now using resistance bands. We started using resistance bands a few weeks ago, but we were doing isometric exercises. When doing these isometric exercises on my neck, Laura would apply pressure with the resistance band, and my job was to hold my head from moving forward for a total of two minutes. Now, Laura is applying resistance with the band, and my job is to push my head backwards against the resistance of the band itself. Even though we are on the yellow resistance band, which is the least amount of resistance we can get, as this muscle strengthens, we will move to the other colors of resistance band which will increase the amount resistance that I’m having to pull against. These may be small baby steps for some, but it’s still a challenge for me and I’m working hard at it. Next week, they will transfer me out of my wheelchair back to the therapy table and start working on my legs again. Even though working on my legs and my feet is somewhat uncomfortable from time to time, it is getting better and I’m able to make it through the workout without sounding like a five-year-old girl. I may want to scream a few choice words during my workout, but then again, I’m sure everybody in my condition would probably be reacting the same as I am.In this week’s video, I’m going to try to clear up some confusion that’s floating around the Internet regarding the differences between an IV administered treatment and an IT administered treatment. Those of us that are receiving our Spinraza treatments are receiving them through what is known as an IT, or intrathecal type of delivery system. When AveXis gets their drug, ZOLGENSMA, passed by the FDA in May 2019, to become the second FDA approved treatment for those of us who suffer from SMA, they will be using an IV administered treatment. The questions that are being asked are what are the differences between these two types of delivery systems, and why these delivery methods were chosen by the pharmaceutical companies for those of us that will be receiving them. Click HERE to view my video.I hope that all of you had a fantastic Christmas and a happy new year. Do something for yourself this upcoming week that will make you a better person. God bless you and I’ll see you next Sunday. -
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