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My Weekly Journal – 09/02/19 Through 09/08/19
Monday, Sept. 2, Through Sunday, Sept. 08 – With everything that I’m doing at BioNews Services, along with my physical therapy schedule, and everything else that I have going on in my life, this was an extremely busy week. I’m currently working with a doctor who specializes in pulmonary rehabilitation, so we can get his podcasts started for BioNews Services. This is a new venture for BioNews, and it’s one that I’m excited to be a part of. Trying to organize everything, and getting everything up and running on time and on schedule, has proven to be quite a task, but, everything worked out for the best.
When I went for my workout with Emily, and her student Lexi, they transferred me out of my wheelchair to the therapy table and we worked on all of my range of motion and flexing exercises. Before laying me down on the table, we worked on my balance exercises. Emily normally does perturbations, where she pushes me forward, backwards and from side to side, to test my balance. Now that my balance has improved, she is having to come up with new ways to push me further with regards to this exercise. With Emily standing in front of me, and Lexi standing behind me, we had another physical therapy student standing in front of the table, and all 3 of them began shaking the table in different directions to try to throw me off balance. This was actually quite fun, but anybody looking at the 3 of them shaking the table to try to make me lose my balance, would probably think that this was a form of torture that they were putting me through. We were all laughing while I tried to keep my balance. Overall, I did rather well, but it was still funny to look at from someone who may have just been walking into the therapy center and not known what they were doing. Emily and I are working on her next article for the HCP site for BioNews Services, and her article will talk about letting physical therapy students work with patients that have SMA. Most physical therapy students only learn a little bit about what SMA is while they are in school, so by letting the students work with me, I’m able to not only tell them about my story with SMA, but hopefully, relieve some of their fears with regards to working with patients with SMA. I love working with students because they are eager to learn, and I’m just as eager to teach. I’m hoping that Lexi will see more SMA patients when she graduates in December. I know she’s gonna make a great PTA.In this week’s video, I’m sharing information that was given during the recent Cure SMA webinar, where they gave some great updates regarding Zolgensma. I focus on 2 clinical trials from AveXis Pharmaceuticals, and I also give my answer as to whether or not I’m going to switch from Spinraza to Zolgensma when it becomes available to those of us who are adults. Click HERE to view my video.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 in a couple weeks. -
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