Monthly Journal - March (2019)

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Monday, March 18, Through Sunday, March 31 - The past two weeks have been anything but normal. Two weeks ago, I posted a video where I talked about my recent maintenance dose injection of Spinraza. In my update, I said that everything went well and that I was feeling fine. On Wednesday, March 13, I started experiencing some problems sitting up straight in my wheelchair. After living with this discomfort for nearly 5 days, I went to the hospital and was diagnosed with prostatitis. This is the reason why I did not post a video last week.


When I went to the hospital on Saturday, March 16, the emergency room physicians ran bloodwork and urinalysis, which came back fine. To find out what was going on with me, they scheduled me for a CT scan. When the doctor came back into my room to read the results of the CT scan, he told me that I had prostatitis, which was an infection in my prostate. He told me that this is the reason why I was having the discomfort that I was having, and it was also the reason why I was unable to sit straight up in my chair. The easiest way to describe this would be that it felt like I was sitting on an orange. The emergency room doctor gave me a prescription for antibiotics and some pain medication. While I'm no longer on the pain medication, I have to continue my antibiotic for a total of 40 days.


Over the past two weeks, I continued with my physical therapy. Week before last, Emily and her student, Carl, transferred me from my wheelchair to the therapy table and we did my balance exercises along with my leg exercises. Everything went well and I'm finding that my range of motion in my legs are getting better. This week, we worked on my core strengthening exercises using the resistance bands, and also some isometric reverse crunches on my back. My neck muscles seem to be improving slowly, and everything went well during my workout.


In this week's video, I go into detail as to the reasons why I didn't post a video last week, and also describe what happened to me when I went to the hospital and was diagnosed with prostatitis. I also announce that I am only going to be doing my videos every two weeks, versus weekly videos. I'm doing this because my work schedule for BioNews Services has increased, and right now, there's not really a lot of new information to report on myself. Besides physical therapy, everything else seems to be copacetic, and after my schedule settles down with BioNews Services, and there is more information to report within the SMA community, I will start doing weekly videos at that point. Click HERE to view my video. Also, click HERE to view my new computer set up that I got for my job with BioNews Services.


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 2 weeks. 

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Monday, March 11, Through Sunday, March 17 - This was one of those weeks where everything started out great, and then on Thursday, it seems as if my luck ran out. I went back to UT Southwestern Medical Center on Monday, March 11 for my 8th injection of Spinraza. Everything went well regarding my procedure, but on Thursday, my prostate enlarged and it made it very difficult for me to sit up straight in my wheelchair. If I update my website and YouTube channel on Saturday, that meant that I had to go back to the hospital. If I do have to go back to the hospital, they will probably want to admit me for a few days to run some tests and to give me some antibiotics. If I update my website and YouTube channel on Sunday, like I normally do, that means that the symptoms that I'm going through have gotten better.


When I went in for my workout with Emily on Tuesday, we went through my 4 week reevaluation. My reevaluation went very well, and I will post the results of this evaluation next week. I will also discuss these results in next Sunday's YouTube video. After my reevaluation, Emily and I worked on my core strengthening exercises with the resistance bands. After the evaluation, I was tired, but we still went through my normal core strengthening exercises, and I was able to do everything without any issues.


In this week's video, I discuss what happened to me on Monday, March 11, 2019, when I went back to UT Southwestern Medical Center in Dallas Texas for my 8th injection of Spinraza. This was the beginning of my second year of maintenance doses, and I detail exactly what doctors did to me, and I also discuss a change that doctors made to my procedure which made it much easier for me. Click HERE to view my video.


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 Sunday. 

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Monday, March 4, Through Sunday, March 10 - This was an extremely busy week, but it was also very productive. Usually, about 3 or 4 days before I go in for my next injection, I try to isolate myself. I tried to minimize my contact with everyone, so I don't take a chance on getting sick. This usually means that I lock myself in my office and try to avoid anyone who has a pulse. While I'm usually in my office for the majority of the day, I find myself becoming a hermit to avoid the possibility of getting sick. Let's face it, the last thing I want to do before getting my next Spinraza injection is to get sick. Our bodies are already compromised after the injection, so I guess this is my way of playing it safe.


When I went in for my workout with Emily on Tuesday, she and her assistant Vicki, transferred me from my wheelchair to the therapy table. We started with my balance exercises first, before they laid me down on my back and started working on my legs. After dating my balance, and while Vicki is standing in front of me and Emily is standing behind me, Emily will begin pushing me forward, backwards and from side to side in an attempt to make me lose my balance. My job is to keep Emily from pushing me too far and making me lose my balance. As I stated in previous journal entries, this exercise looks like a sadistic game that we are playing with each other, but it's actually a lot of fun. One of my YouTube subscribers sent me a message in my Instagram account asking me if these balance exercises were difficult. I told her that I worked on my core strengthening for about six months before beginning these balance exercises. By increasing my core strength, such as my abdominal, back, obliques and neck muscles, I truly believe that these balance exercises are easier for me to do. I will give you one word of advice though, never tell your physical therapist that the exercises are too easy, because they had a unique way of making these exercises much more difficult. Two weeks ago, Emily decided to introduce a therapy ball into my balance exercises. We didn't really do much with it during my first session, but this past week, we utilized the therapy ball much more. When we first started these exercises, Emily would stabilize my arm on the ball to keep it from falling off. My job was to lean to that particular side and then come back up into a neutral sitting position. While I thought that this exercise would be difficult, I was pleasantly surprised at how easy it was. In my YouTube video that I uploaded on Sunday, I state that it looks like Emily is helping me lean to my side and come back into a neutral sitting position, but in reality, the only thing that she was doing was to stabilize my arm on the therapy ball so it would not fall off. When I started this exercise on my right side, I ask Emily to let go of my arm so that I can see if I can keep it on the therapy ball without any help from her. When she let go of my right arm, I felt the therapy ball starting to shift from one side to the other. I now not only had to keep my arm on the therapy ball in the keep the therapy ball from shifting from side to side, I also had to maintain my balance. While it took me a few attempts to get it right, I was eventually able to lean to my right side and keep my arm stabilized on the therapy ball, and I was also able to come back up into a neutral sitting position without too much difficulty. As you can tell by the picture in my journal entry, I think Emily was as surprised as I was. It's nice to get a two thumbs up seal of approval from your physical therapist, and we were both extremely happy with the results. In the coming months, we will add more repetitions to this exercise in hopes that it will not only improve my balance, but it will also improve my core strength.


In this week's video, I discuss my new balance exercises that I’m doing with my physical therapist Emily. We are now using a therapy ball during my balance exercises to improve my core strength and balance while sitting unassisted. During my workout with Emily on Tuesday, March 5th, we took a few pictures of me performing this exercise, and I put these pictures in a short video detailing exactly what we are trying to achieve with this particular exercise. I also discuss my upcoming Spinraza injection which is scheduled for Monday, March 11, 2019.  Click HERE to view my video. Click HERE to view some of the pictures we took during my workout.


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 Sunday.