Monthly Journal - July (2019)

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Monday, July 29, Through Sunday, August 4 - I got so much done this week, it felt as if I had 30 hours in each day, and had 8 days in the week. I guess that's one of life's mysteries that none of us will ever be able to fully understand. Why can we get so much done one week and then feel that we get nothing done another week? It's been just over a month since my 9th Spinraza injection, which was actually my 5th maintenance dose injection. I've only had a few days during this month where I felt a little bit weak, but overall, my energy level and strength have been terrific.


When I went for my workout with Emily on Thursday, we had to go through my reevaluation. Every 4 weeks, we go through these re-evaluations just to take measurements and to check on my progress. My insurance company contacted Emily and told her that they no longer needed the measurements on my knees, because they were not seeing enough improvement. Even though the insurance company stated that they didn't need these measurements, we still continue to work on the range of motion and flexibility in my legs, just to make sure that I don't lose any of the range of motion that I've gained over the past 6 or 8 months. When we were taking my measurements, she went ahead and took the measurements just to see how much of a negative degree bend I had in my legs, and surprisingly, I received some excellent numbers. My reevaluation scores are in the test results section of my website. Click HERE if you would like to see these results. The reevaluation process only took about 20 minutes, so we spent the remaining 40 minutes working on my core strengthening exercises. Everything went as planned up until we got to the point to where I was going to be doing my crunches with the resistance band. Normally, Emily will take the blue resistance band and sit behind me. She then takes the resistance band and places it around my chest, and my job is to lean forward while she applies resistance. Instead of grabbing the blue resistance band, Emily grabbed the black resistance band. The black resistance band is the band with the most resistance. I stared at her with a questionable look on my face, but she just smiled at me and told me to give it my best shot. After leaning forward and after feeling her pullback on the resistance band, I slowly came back up into position and began leaning forward to see if I could accomplish this. You really don't know how much improvement you're getting until you're forced to do something new, and as I leaned forward, I was pleasantly surprised in my ability to do it without too much difficulty. I performed 2 sets of 30 reps. I wanted to do another rep of 30, but Emily told me that we better stop to make sure that I didn't overdo anything. She said when we do this exercise in 2 weeks, we would increase it to 2 reps of 40, and then in another 2 weeks, we would do 3 reps of 30. The one thing that I like about Emily and all of the physical therapists that I work with, is that they take me slow with regards to my progression. There are times that I want to go gung ho and full speed ahead, but luckily, Emily is there to slow me down to a more manageable rate. Sometimes, I have the ability of letting my enthusiasm write a check that my butt can't cover, so it's nice to have someone there to tell me to slow down. Next week, when I go for my workout, Emily and Vikki will transfer me to the therapy table and work on the range of motion and flexibility in my hips, legs, knees, ankles and feet. Emily is also in the process of writing her next article for the SMA News Today HCP website. If you look at the picture on this week's journal entry, you'll see one of the pictures that will be featured in this article. We are working on stretching the muscle that's in my hip, to make it more comfortable for me. Let's face it, if you sit as many hours as I do, your muscles tend to get tight. In the article that Emily is writing, she talks about how important it is to do these types of exercises. As soon as she produces the article for the HCP site, and after it's published, I'll provide a link so that you can go out and read the article for yourself. I'll also be taking some of these pictures and putting them to a short video explaining how important these exercises are for me.


When I do my video for next Sunday, I'm going to be answering the question that I've been wanting to answer for quite some time. A few of you have written me emails since the beginning of my YouTube channel asking me why I'm not an Ambassador for Biogen Pharmaceuticals. Up until just a month ago, I was very hesitant to answer this question because of certain circumstances that I'll explain in my video next week.


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, July 22, Through Sunday, July 28 - Overall, this was a great week. I completed quite a few projects that I was working on for BioNews Services, and my week seemed to go as smooth as it could. I ate good, got some good rest, and my body feels great. Other than a little bit of discomfort in my right hip, which I'll talk about in just a moment, it was a pretty uneventful and smooth week.


I had to rearrange my physical therapy scheduled this week because Emily was in St. Lucia at a destination wedding. When I went for my workout with Emily on Thursday, she was at the front desk doing some paperwork. I asked her how St. Lucia was, and whether or not she was sunburned. She laughed and said that she definitely got too much sun, but she had a fantastic time. This past week, Emily and Vikki transferred me to the therapy table and we worked on all my balance and range of motion and flexibility exercises. We started out doing all of the normal balance exercises that we do, and this really went well. Along with the perturbations and Emily shaking the table, my core muscles got a great workout. Sitting on the edge of the therapy table and balancing, there needs to be a level of trust between you and your therapists. When I first started doing this about 6 or 8 months ago, I was very apprehensive, but that didn't mean that I didn't trust Emily and Vikki. Now, it's something that I don't even think about. I know that Emily is behind me and Vikki is in front of me, and I never worry about falling off of the therapy table. Trust is essential when doing these types of exercises, and I hope and pray that you have enough trust in your therapist, like I do with mine. After finishing my balance exercises, Emily and Vikki laid me down on my back. When I was on the therapy table 2 weeks ago, both Emily and I forgot to do the stretching in my right hip, so that was one of the things that she focused on during my workout. I thought it would be a little painful. given the fact that it had been 2 weeks since I was really stretched out, but as she started flexing and stretching my right hip, it actually felt terrific. As I laid on my back and zoned out, Emily asked me if I was okay. When I open my eyes and looked at her, she laughed and said you must really be enjoying all of the stretching. I told her that I could already tell that this week was going to be better than the previous one. After finishing all of my stretching and flexibility exercises, Emily worked on the muscles in my neck, which really felt good. It's almost like getting a massage, but, Emily doesn't allow me to go to sleep, LOL… After finishing with my neck, Emily and Vikki sat me back up on the edge of the therapy table, and we worked with the resistance band while I leaned to my left and my right. After we finished with this, I thought it was time to transfer back to my wheelchair, but Emily grabbed the red resistance band and gave it to Vikki, who was standing in front of me. She told me that she wanted Vikki to put the resistance band around my back, and we were going to work on an isometric exercise. She wanted Vikki to pull my upper body toward her with the resistance band, and my job was to remain upright, without leaning forward. To my surprise, and I think even to the surprise of both Emily and Vikki, I was able to do this without any problems. We started out with Vikki about a foot in front of me, then she slowly backed up further and further, until the resistance band started pulling me forward. At this point, I had to use my core muscles to remain in a seated upright position. I was actually quite surprised at how far Vikki had to walk away from me before it started to become difficult for me to remain upright. Emily was standing behind me with her hands in front of my shoulders, so I knew that if I started to lose my balance, Emily would be able to grab me and keep me from falling. Again, this is where trust comes into play. Emily said that I did so good, we would use the green resistance band in 2 weeks. As the weeks and months progress, I should be able to use the higher resistance bands in this particular exercise. The isometric exercise that we did is important for me, because this builds the muscle and my core strength that I need to stay sitting back in my wheelchair as I go down an incline, whether it be a ramp or any unlevel service.


In this week’s video, I talk about something that has nothing to do with SMA, but it’s a subject that all of us with SMA may have to face at certain times in our lives. Recently, the 2019 Annual Cure SMA Conference was held in Anaheim California. Due to my inability to fly, I was unable to attend this conference, and in my video, I share my feelings as to what needs to be changed so that those of us in wheelchairs, have the ability to fly like anyone else. This is the right that we not only want and need, it’s a right that we deserve.  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 of weeks.

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Monday, July 15, Through Sunday, July 21 - This past week, was smooth and non-eventful. The only time that I left the house was when I went for my workout, and other than that, I spent the majority of my day behind my desk working on podcasts, flash briefings and trying to restructure BioNews Service's multimedia and social media platforms. Work is keeping me extremely busy, and I'm extremely thankful for that. This upcoming week is filled with conference calls, physical therapy and other activities that will keep me busy each and every day.


This past Tuesday, when I went for my workout with Emily, we focused on my core strengthening exercises. Last week, when Emily and Vicki transferred me to the therapy table, both Emily and I forgot to do the stretching exercises on my right hip. When Emily and I were working out this week, I told her that my right hip was hurting, and then we both remembered what we had forgotten to do. She was extremely apologetic for it, but I told her that it was more my fault than hers because I should've remembered that working my hip out keeps me from being sore. When I go back for my workout this coming week, we will definitely stretch out my right hip which will keep me more comfortable than I've been in the past week. Last week, we did all of my normal core strengthening exercises, and I spoke to Emily about something else that I was thinking about with regards to helping my balance while I sit in my wheelchair. While my core strength is improving, I'm still very uneasy about rolling on uneven surfaces in my chair. About 6 months ago, I lost my balance while I was driving my wheelchair when I hit a patch of concrete that was angled to the left. This completely through me off guard, and I lost my balance and fell to my left. Luckily, my seatbelt kept me from falling out of my wheelchair, but losing my balance made me realize that this is something that I needed to work on. In the coming months, after all of our summertime heat dissipates, Emily and I will go outside and she will work with me on driving my wheelchair's on uneven surfaces. This is definitely something that is scary to me, but having either Emily or Vicki with me, I know that if I get into a situation where I'm going to lose my balance, they will be there to help me. While my balance is definitely better, these uneven surfaces that I may encounter in the future, is something that I know that I need to work on. Next week, Emily and Vicki will transfer me out of my wheelchair to the therapy table, and we will do all of my balance exercises along with my stretching and range of motion exercises.


I'm still trying to get used to doing a video every other week, instead of every week. With my work schedule the way it is, it's nice not to have to do a video each week, but as new treatment options and clinical trials open up and become available for those of us who suffer from SMA, I may have to start doing a video per week, depending on the amount of information that I have. I did update my photo gallery with a few new pictures. Click HERE to be taken to my photo gallery.


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, July 8, Through Sunday, July 14 - This week started out with a bang, and it got better as the week went on. On Monday, July 8, I went back to UT Southwestern Medical Center's William P Tate University Hospital for my 5th maintenance dose injection of Spinraza. It's hard to believe that I've now had 9 injections, and it shocks me as to how fast time has flown by. This was probably the smoothest and easiest procedure that I've gone through, and I detail everything that happened to me in my YouTube video, which I'll talk about more than just a moment.


This past Tuesday, when I went for my workout with Emily, she and her assistant Vicki, transferred me from my wheelchair to the therapy table. Emily will be doing another article for the SMA News Today HCP site, which is our healthcare professional website that we set up for doctors, medical professionals and others in the healthcare industry. Her article will detail how to transfer someone with SMA from their wheelchair. While most physical therapists know how to transfer a patient using a slide board, not many therapist have had to transfer someone who is unable to assist in the transfer process. This article will detail how to do this. During my workout, one of the physical therapy students that was there took pictures as Emily and Vicki transferred me, and I will use these pictures in the article that Emily is going to write. After transferring me to the therapy table, we worked on my balance exercises. Emily did her normal perturbations, where she pushes me forward, backwards and from side to side, and she also shook the table with her knee, which added another degree of difficulty. Along with the perturbations and her shaking the table, my core muscles get a great workout. After about 15 minutes, they laid me down on my back and began working on my range of motion and flexibility exercises. After this, Emily worked on the muscles in my neck, then they sat me back up, and we finished with some resistance band training while I leaned from side to side. These exercises worked the oblique muscles. Next week, Emily and I will work on my core strengthening exercises using the resistance bands.


In this week's video, I detail exactly what happened to me when I went back for my 5th maintenance doses Spinraza, and I also give my subscribers and followers some pointers on how to avoid getting a headache after one of these procedures. Headaches are common side effect of any intrathecal or spinal cord injection, and the tips that I share will help to avoid getting one of these headaches during any of your procedures. Click HERE to watch 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 few weeks.

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Monday, July 1, Through Sunday, July 7 - This is been one of those weeks that started out perfectly, took a turn for the worse, then leveled off to become a very good week. While we all hope for good weeks to become repetitive, this isn't always the case. My week started out normally, with regards to how I felt, then late in the afternoon on Monday, I started experiencing quite a bit of weakness in my arms. Come to find out, this weakness that I was experiencing wasn't due to anything but my own stupidity and forgetfulness. I'll touch on this in just a moment.


This past week, when I went for my workout with Emily, we went through my 4 week reevaluation process so that she could turn in these results to my neurologist. We did all of the normal measurements and strength tests, and everything turned out great. I'll post my results of my reevaluation to my website next week. After finishing all of these measurements and tests, Emily and I focused on my core strengthening exercises, and the exercises that we do for my neck muscles. She also found time to stretch out the muscles in my hips and my legs, which definitely felt good. Next week, Emily and Vicki will transfer me from my wheelchair to the therapy table and we will do all of my stretching and range of motion exercises, along with all of my balance exercises.


I was actually quite surprised that my results on my physical therapy reevaluation went as well as they did. As I stated earlier, late in the afternoon on Monday, I started experiencing quite a bit of weakness in my arms, and I also felt somewhat lethargic. When I got to the workout facility, I spent a few minutes talking with Emily about this. We discussed some of the possibilities as to why I felt this week is I did, and the only thing that we could think of was that I was just overworking myself with regards to my job and my physical therapy. After my workout, I went home and finished my work day with regards to BioNews Services. On Wednesday morning, I still felt extremely weak and lethargic. Around 2:30 PM on Wednesday, I decided to lay down and rest for the remainder of the day. While laying in my bed, I thought about how I felt, and I racked my brain trying to figure out what was going on. Around 8 PM on Wednesday night, the light bulb went off in my head. I realized that I had forgotten to drink my protein supplement shakes for the last 5 days. After thinking about it for a little bit, I realized that my body was starving for protein, thus, causing the weakness and the lethargic feelings that I was going through. I had Jennifer, one of my caregivers, get me one of my protein supplement shakes and I drank it. On Thursday morning, when I woke up, I felt 100% better. The strength in my right arm was not near as bad as it was, and I then realized that not drinking these protein supplement shakes was the cause of all of my problems. I went to bed early again on Thursday, and I made sure that I drank one of my protein supplements. On Friday, after I woke up, all of the strength that I lost earlier in the week had returned, and I was fine for the rest of the week.


In this week’s video, I discuss how Spinraza may, or may not be helping me. I talk about the differences between the way I felt while receiving my loading dose injections, versus how I feel while going through my maintenance dose injections. The differences may surprise you, and I’m hoping that the information that I give you, will give you information that you can talk to your doctors about.  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 soon.