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My Weekly Journal – 12/10 Through 12/16
Monday, December 10, Through Sunday, December 16 – Another week flew by, and for the life of me, I don’t know where it went. Changing my physical therapy workouts from Thursdays to Tuesdays has thrown my schedule off, and I’m having to readjust what I do during the week because after keeping my Thursday schedule for nearly a year, it’s going to take me some time to get use to my new schedule. Being nearly 54 years old, I get into a routine and I’m finding it harder and harder to break a routine as I get older. I’ll eventually get used to it, but even the smallest of changes can throw me off my game.If you read my journal entry last week, I told you that my physical therapist, Laura, asked me to start coming in on Tuesdays because this is her short day, and I would be her only patient. Along with being her only patient, her physical therapy assistant, Emily, would be available to help in my workouts and it would also make it a little easier for Laura. Since Laura spends the entire hour with me, and me alone, having another therapist to help her will make it easier, especially when it comes to transferring me from my wheelchair to the table and then from the table back to my wheelchair. When I went for my workout this week with Laura on Tuesday, Emily helped transfer me from my chair to the physical therapy table and we began my exercises. Since they were a little busy this past Tuesday, due to the upcoming holidays, Emily worked with other patients and Laura worked with me. After transferring to the physical therapy table, I had to sit unassisted for 20 minutes without any support on my back or my sides. Now that I can keep my balance relatively well, Laura has began a strange new exercise with me. While sitting behind me so I can’t see her, and while Emily stands in front of me, Laura will begin shaking the table, testing my ability to keep my balance. I told her it would make it much easier for me if she sat in front of me where I could see her, and she just laughed and said “good try”. Not knowing when she’s going to shake the table or how hard she is going to shake the table, causes me to always be alert. When we first began this exercise, Laura would shake the table lightly, but now, it feels like a 7.0 earthquake. The only time that I lost my balance and began to fall backwards was when she came up from behind me and placed her knee directly behind where I was sitting, forcing the table to lean backwards. This sudden change in the table was a little too much for me to handle, but Laura was there to stop me from falling. It still took me a little while to swallow my heart, but I bet if you were to check my blood pressure when she did that, it would have been off of the charts. In the 20 minutes that we did this exercise, I only lost my balance once, so I felt pretty good about my results. I asked Laura if she was surprised by my results and she told me that she really wasn’t too surprised. She had a feeling that I could do it, but she did say that I did surprisingly well. She said that we will continue this exercise each time that I’m sitting unassisted, and she told me that it will get easier as time goes on. After finishing my balance exercises, Laura and Emily laid me down on my back and Laura began by stretching out my legs and working on my range of motion in my hips. A few weeks ago when we did these exercises, I felt a little sore in my left knee, and the soreness persisted for over a week. On Tuesday, Laura placed her hand a little above my knee when stretching my legs in this worked much better. Laura mentioned that my legs seem to be getting better because she said that my muscles in my legs don’t feel as tight as theydid when we began working on my legs. She even mentioned that my left leg is stretching and straightening out, almost to the level of my right leg. Hearing your therapist tell you that you’re showing progress is exciting, and you couldn’t of wipe the smile off my face with a chisel and hammer. I was a little sore in my right hip when I went in for my workout, but after finishing my exercises with Laura, and after transferring back into my chair, my hip felt great. It started to get a little tender toward the end of the day before I went to bed, but the next day, everything was fine. During my workout, Laura also worked on the tendons and ligaments in my knees along with flexing my ankles and toes. The numbness and pain that I had experienced in my right leg due to the damage that was shown on the CT has virtually disappeared. While I still get sore from time to time, I’m having more good days than bad.In this week’s video, I give a cost comparison between Biogen’s drug Spinraza and Avexis’s drug ZOLGENSMA. Even before the potential approval by the FDA for ZOLGENSMA, there are already numerous Internet articles talking about the price of this potential one time injection. When Biogen introduced Spinraza in late 2017, the media focused on the cost of this therapy versus the benefits that it would have for those of us with SMA. The same thing is happening with ZOLGENSMA, and I wanted to do a cost comparison to show my subscribers and followers how to address this particular issue. Along with my advice, I give you my perspectives on what I think regarding this issue, along with words of encouragement. 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. -
1 Reply
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Glad to hear PT is going well. It’s interesting to hear the types of activities you do as I find every therapist has different techniques.
Haven’t watched your video yet, but looking forward to. It’s always difficult to justify the cost of these breakthrough treatments, but that’s how the world works and it spurs on future treatments. In the long run not treating the disease is much more costly. Anyway that’s my two cents on the issue.
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