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My Weekly Journal – 08/26/19 Through 09/01/19
Monday, August 26, Through Sunday, Sept. 1 – Have you ever had one of those weeks where everything seemed to be in the wrong place just because you had to rearrange one meeting or event? My caregivers came back from vacation on Thursday morning, so I had to move my workout with Emily from Tuesday to Thursday afternoon. When Tuesday came, I felt completely lost because I am so used to going to physical therapy, and this one small change in the week through my schedule off completely.When I went for my workout with Emily on Thursday, it was time to do my 4 week reevaluation. Emily’s physical therapy student, Lexi, performed all of the measurements with regards to my range of motion and strength measurements, then, Emily followed up behind her and remeasured to make sure that Lexi got the correct numbers. It’s really a lot of fun working with physical therapy students as they learn the different tricks and trades of becoming a physical therapists. One funny thing that happened was that Lexi told me that she had never taken as many measurements on a patient during their reevaluation as she did mine. Emily, Lexi and I began laughing, and I told Lexi that I am the epitome of everything that is wrong. She laughed and patted me on the back and told me that I wasn’t, but it still brought a smile to both of their faces. My reevaluation went well, except for the measurements in my ankles. The swelling in my feet was pretty substantial this past week because of my confusing schedule and my change in sleeping patterns. After doing the reevaluation, Lexi and Emily worked on my core strengthening exercises using the resistance bands and isometric exercises that we normally do. Next week, Lexi and Emily will transfer me from my wheelchair to the therapy table and we will do my balance exercises, along with all of my range of motion and flexibility exercises. Emily’s next HCP article will be about letting physical therapy students work with patients, and Lexi will be writing a paragraph in the article describing what she has learned by working with me, and what she has learned with regards to working with a patient with spinal muscular atrophy.Next week, my video will cover a topic that I think all of you should be made aware of. Cure SMA recently hosted a webinar. This webinar detailed some great information regarding updates on Zolgensma. In this video, I go over some of the details regarding when this treatment may become available to those of us that are adults, and I also give my decision as to whether or not I’m going to stay on Spinraza or make the move to Zolgensma. My decision may surprise the majority of my subscribers and followers, and I thoroughly explain why I make this important decision. This is a video that you will definitely want to watch, and the information that I give you, should be great information to discuss with your families, friends and your medical staff.I’ve updated the flash briefings that I do for BioNews Services. Click HERE to go to 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 next week. -
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