Monthly Journal - September (2019)

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Monday, Sept. 9, Through Sunday, Sept 15 - This past week was crazy. I find it somewhat comical that some weeks are slow and mundane, while other weeks are crazy and hectic. The weeks that are crazy and hectic seem to go by faster, I guess because I'm so busy. This past week, I had quite a few videos to do for BioNews Services, and I also had to edit the video and the article that my physical therapist and I are doing for the SMA News Today HCP site. I'm hoping that the upcoming week will be somewhat slower, which will hopefully allow me to catch my breath.


When I went for my workout with Emily, and her student Lexi, we worked on all of my core strengthening exercises using the resistance bands and isometric exercises. This was Lexi's last week to assist in my workouts. Lexi had a great spirit and attitude, and really enjoyed learning more about spinal muscular atrophy. I know that when she gets her PTA certification in December of this year, she's going to make a great therapist. All of my exercises went well, and Lexi also had the opportunity to help me perform all of my stretching exercises for my hip and leg, while I was sitting in my wheelchair. I like the fact that she was able to perform these exercises while I was on the therapy table and in my wheelchair, because this demonstrated to her that these exercises can be performed in different scenarios with her patients. During the past 6 weeks, we took numerous pictures of Lexi working with me, along with Emily, and I put these pictures to video that will be available on the HCP site. As soon as Emily's HCP article is published, I will provide a link in my journal entry so that those of you that are reading my journal entry can see it.


Next week, I will be showing another video that we did with regards to the exercises that Emily and her assistant Vikki are doing with me, to help with the nerve and muscle damage in my right hip and leg. These exercises have helped me tremendously, and I'm hoping that those of you that watch my YouTube channel will not only review the video, I'm hoping that you will talk to your physical therapist about incorporating some of these exercises in your workout routine.


I've updated the flash briefings that I do for BioNews Services. Click HERE to go to the flash briefings.


I hope that you all 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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Monday, Sept. 2, Through Sunday, Sept. 8 - 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.