Monthly Journal - September (2019)

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Monday, Sept. 23, Through Sunday, Sept. 29 - What an unbelievable week. Monday started out just as normal as any week, but something happened during physical therapy that put a smile on my face, and made the rest of my week go much better than I would've ever dreamed of. My work at BioNews Services is going great and my energy level is through the roof.


When I went for my workout with Emily, I was anticipating working with Emily and Vikki, but Laura was there and she wanted to work out with me and Emily. After transferring me from my wheelchair to the therapy table, we began working on my balance exercises. While perturbations are good to use, my balance has improved to the point to where we have to be more inventive as to making these balance exercises more challenging. With Emily behind me, and one of their physical therapy students in front of me, Laura jumped on and off of the table to try to get me to lose my balance. The first time we did this, it took me a few times to get used to the table rocking back and forth, but this past week, it seemed as if my balance was very strong. I was doing so well, Laura went and got a 7 pound therapy ball and started throwing it down on the table to try to shake the table in a different way. This was a dramatic failure that caused all of us to laugh, because Laura was the one getting the workout instead of me. Picking up a 7 pounds therapy ball and throwing it down on the table caused Laura to get a great workout on her arms, and it provided a huge laugh for everyone else. What came next was what made my week so incredible. After laying me down on my back, both Emily and Laura began working on my range of motion and stretching exercises. We did this for about 20 minutes, when Emily and Laura started talking between the both of them in a quiet voice. I looked at them both with almost a fearful look on my face, because I knew that they were up to something. Laura looked at Emily and asked Emily if she wanted to try it, and Emily smiled and said absolutely, and she said she had been wanting to do that to me for a long time. Now my heart was beating much faster than it normally does because I had that feeling of vulnerability rushing through my body. I looked at the both of them and told them that I wanted to know what they were planning on doing to me. Laura just smiled and said you'll find out in just a minute, and she walked away. Trying to get information from Emily was just as frustrating. When Laura returned, she had a gait belt, a black resistance band and a bedsheet. It was then that I learned what they were planning on doing to me. They wanted to perform an exercise called an assisted bridge. This exercise was intended to check whether or not I was able to use my glutes and quad muscles in my legs. After deciding to use the bedsheet, Emily rolled me on my side and Laura placed the sheet under my waste, just above the top of my buttocks. After rolling me back over on my back, Emily pulled the sheet toward her so that both she and Laura would have equal amounts of this sheet to use. They then lowered the therapy table down as far as it would go, and Emily and Laura stood on a stepstool on my side. They placed 1 foot on the stepstool and the opposite knee on the therapy table. With the physical therapy student stabilizing my feet to the therapy table, they first began lifting my hips off of the therapy table to extend my hips. They started slowly, judging my comfort level. After being able to do this without any discomfort, Laura wanted me to try to push my body toward the top of the therapy table when they elevated my hips. While I thought that this would be an impossible task, I was pleasantly surprised at the results. The first couple of times that they elevated my hips, I tried to push my body forward, but didn't have any luck. On about the 5th try, when they elevated my hips and I tried to push forward, I actually felt my body move about an inch. Both Emily and Laura looked at each other and they both said that they saw my body move forward. The smiles on their faces immediately caused me to become somewhat emotional, because this was the first time that I've ever been able to do anything like this. We did this exercise another 5 or 6 times, and I continued to push my body forward. While the forward progress was only about an inch, we all knew now that these muscles were at least activating and firing like they were supposed to. Both Emily and Laura could tell that I was getting emotional, and I could see some emotions coming out of their faces as well. This was a huge step in my exercise program, and it's another exercise that we are going to focus on in the coming months. After we finished all of my exercises, and after they transferred me back to my wheelchair. Laura told me that we would be doing this exercise again in a couple weeks, and I could hear some excitement in her voice. It'd been quite a while since I got to work out with Laura, because she just returned from maternity leave after giving birth to her son. Emily is going to be on vacation this next week, so Laura will get to work with me on my core strengthening exercises during this upcoming week.


Over the next couple weeks, I'm going to be reporting on Risdiplam, which is a potential treatment from a company called Roche/Genentech. This is an oral treatment for those of us with SMA, and it works on the SMN2 gene, similar to Spinraza. I've heard through the grapevine that Roche/Genentech will be seeking FDA approval in the coming months regarding their potential treatment, and there has been quite a bit of excitement regarding this new drug. I will also be giving an update with regards to other treatments that are currently in clinical trial stage and give you my opinions as to whether or not I see these coming to fruition for those of us with SMA.


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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Monday, Sept. 16, Through Sunday, Sept. 22 - Mundane, routine, normal and other similar adjectives, shouldn't be used when describing this week. This week is been filled with surprises that it made me think that I may be getting a little better than what I had originally thought. My energy level this week has been phenomenal, and I'm not sure if this is something that will be a normal occurrence, or if this is just a phase that I'm going through with my disease. I have so much to tell you, so let's get started.


When I went for my workout with Emily, this was the first week in 6 weeks that I was back working with Emily and her assistant, Vikki. While I thoroughly enjoyed working out with Emily and Laura's PT students, I was also equally excited about getting back to working out with Emily and Vikki. It's funny how over a course of time, we build a camaraderie with the people that we spend the majority of our time with. Everyone at my workout center have great attitudes, but there's something about working out with the people that you use to, that just made this particular workout somewhat special. After transferring me from my wheelchair to the therapy table, I thought we were going to begin with my normal balance exercises. Emily and I had discussed changing these balance exercises up, to make them a little bit more difficult and challenging, and given the fact that my balance has improved, this made sense. Instead of doing the normal perturbations were Emily pushes me forward, backwards and side to side, we decided that we would have someone get on and off of the therapy table to challenge my sense of balance with weight distribution. With Emily behind me, and Vikki in front of me, Laura began getting on and off of the therapy table to challenge my balance. This was something that was completely new to me, and while it took me a little while to get used to it, all of us were pleasantly surprised at my abilities. Over the past couple weeks, I have had a few challenging workouts, and these challenges made me question my improvements. It's not that I was getting depressed, I was just wondering how much improvement I was making. After last Tuesday's workout, I felt as if I could officially say that I have definitely improved. While Laura was getting on and off of the therapy table, I could feel my core muscles firing and keeping my body upright, and while this may seem like a small accomplishment to some, it was huge to me. While we were all doing this exercise, I was getting great feedback from Emily, Vikki and Laura, and while I felt somewhat embarrassed about all of the accolades, it stroked my ego enough to where I really fealt these exercises are giving me some benefits that I will be able to use to get stronger. In the next couple weeks, I'm going to video this portion of my workout so that you can see exactly what I'm talking about. Let's just say that I wasn't the only one smiling, and this was probably one of my best workouts that I've ever had. This upcoming week is going to be slightly different than normal. Emily is going on vacation on Wednesday of next week, so we're not only going to do my 4 week reevaluation, we're also going to transfer me back to the therapy table and work on my balance and range of motion exercises. We are switching this up because during the week that Emily is on vacation, I don't want Laura to have to transfer me from my wheelchair to the therapy table. She's just now returning from maternity leave after giving birth to her son, so the week that Emily is on vacation, Laura will work with me on my core strengthening exercises, which we do while I'm sitting in my wheelchair.


In the opening of my journal entry, I made a statement that I was experiencing some changes in my strength that were somewhat surprising. My right arm has felt extremely strong for over a week, and this increase in strength is different than any other increase that I have experienced. I'm not struggling to get my arm up like I had been, and while this has happened in the past, I still experience some of those days where nothing seems to be going right. This past week, everything has gone perfectly. The increase in arm strength has remained throughout the week, and my energy level is the best that it's been since starting my Spinraza treatments. Recently, Biogen announced that they were considering increasing the dosing amount of Spinraza that they are giving their older patients. This is sending shockwaves through the SMA community, and this is a topic that I will be discussing in the next couple weeks. I've always questioned why adults receive the same dosing amount of Spinraza that the infants and toddlers receive, and while this may be something that Biogen had to do with regards to safety and efficacy, increasing the dosing amount, in my opinion, could hold huge potential for older SMA patients like myself. I guess my enthusiasm and excitement around this announcement may be another reason why my energy level has been so high during this past week. 


In this week's video, I'm sharing my message of hope. I'm comparing the past the present, and the present to the future. In a recent email from one of my subscribers, they asked me how I remained optimistic while living with a deadly disease, and my answer, as simplistic as it is, is an answer that I hope all of you take to heart. 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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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.