Monthly Journal - July (2019)

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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.