Monthly Journal - March (2018)

Monday, Mar. 26 thru Sunday, Apr. 01 - This is probably one of the worst weeks that I've had in quite some time. Still suffering from some of the issues with my enlarged prostate, mother nature decided that it was time for me to start suffering from allergies. I just made a comment to a friend of mine nearly a month ago that I never suffered from allergies. I guess I spoke too soon. All week long, my nose ran like a marathon runner, and my eyes were bloodshot for the majority of the week. I knew this had to be allergies because when I woke up on Thursday morning, my solar panels in my backyard were covered in a green film, which turned out to be pollen. I spent the majority of the week with Kleenex shoved up my right nostril to keep my nose from running. While I know that I looked like a strung out crack addict, this was the only thing I could do to keep myself functioning for the week. The only relief that I received was when I went and laid down, but since I couldn't stay in bed all day, I just figured that if people were going to stare at me, I might as well give them a good reason to do so.

I went to workout on Thursday with Laura. When Laura came back to the waiting area to get me, she looked at me and grinned and asked if I was okay. I told her that I wasn't sick, I just had really bad allergies and that the doctor told me that I could still go to work out. After getting a big laugh out of seeing me with tissue shoved up my nose, we began our work out. I didn't realize just how weak I was, because getting through my work out was extremely difficult. Laura could tell that I was getting frustrated, but she told me to relax and that even though I didn't feel good today, next week would be better. I told her that I felt like I was not only wasting my time, but I was wasting her time as well, and I didn't like doing this. She assured me that my difficulty in doing my exercises was because my body was sick, and that next week would be a different story. I went ahead and finish my exercises to the best of my ability and I'm hoping that next week is going to be much better. 

In this week’s video, I’m giving another update regarding Cytokinetics and their drug Reldesemtiv. While last week’s video also discussed an update for Cytokinetics, this week’s update involves my discussion with one of their doctors, and I also discuss the fact that this would be the best time for all of my subscribers and followers to call their doctor regarding Reldesemtiv. Cytokinetics finished their phase 2 clinical trial around the middle of March, and I’m asking my subscribers and followers to call their doctors because now would be the time to discuss the options of possibly being able to participate in the upcoming phase 3 pivotal trial if Cytokinetics takes it to this level. We may still be two or three months away from this phase 3 pivotal trial, and if you start speaking to your doctors now, they’ll have time to review this pivotal trial and possibly get you enrolled to participate in it. Click HERE to view my video

I'm hoping that all of you had a wonderful week. We're getting closer and closer to seeing many more treatment options for Spinal Muscular Atrophy. I'm hoping that each of you take my advice and speak to your doctor this week. I want everybody to be proactive instead of reactive, and this means taking time out of your day this upcoming week in speaking to your doctor and getting their opinions on whether or not this new option is going to be right for you. Have a blessed upcoming week.


Monday, Mar. 19 thru Sunday, Mar. 25 - This week, the weather was absolutely beautiful. I can finally see winter exiting stage left, and spring time weather making its grand entrance.

Toward the end of last week, I started noticing that I was having a little difficulty urinating. The pain level went from a two all the way to an eight before I decided to go to the hospital to find out exactly what was going on. All of my bloodwork came back normal, but the doctor who examined me did say that my prostate was somewhat enlarged and is probably causing me to feel the way that I was feeling. They wrote a prescription for a liquid antibiotic and another prescription for Flomax. After being on my prescription for a few days, my symptoms became less severe and by the end of the week, I was feeling back to my old self.

I went to workout on Thursday with Laura. We did all of my usual exercises, but this week, Laura added more repetitions to my side inflection crunches. As I stated last week, these are crunches that I do going from a seated position to my left and to my right, instead of going straight down in front of my body. These side inflection crunches are difficult to do, but these will help build my oblique muscles which will help me maintain balance and control while sitting in my wheelchair.

I worked all week on my video where I give everyone an update with regards to Cytokinetic's phase 2 clinical trial. If you go to the pharmaceutical companies drop-down menu at the top of this page, select Cytokinetics Info to see the update that I gave along with my personal opinion as to what this update means. Click HERE to be taken to that particular webpage. I give good information in this week's video regarding Cytokinetics phase 2 clinical trial. This is the first update that has me believing that we may have an opportunity to participate in multiple treatment options. Click HERE to view my video.


Monday, Mar. 12 thru Sunday, Mar. 18 - I have been anticipating this week for quite a while. Since finishing my loading doses back in November of last year, waiting for months to begin my maintenance doses has been an exciting time because I knew that this would be a new chapter in my life. My only fear was that the weather would not cooperate and would make it difficult for me to get to the hospital, but thankfully, the weather was absolutely beautiful the entire week.

On Monday, March 12, I woke up early in the morning anticipating what would be a great day. I arrived at U.T. Southwestern Bill Clements University Hospital around 11 o'clock in the morning. I knew that I was a little early, but I was hoping that they were ahead of schedule and that they would take me a little earlier than my scheduled time. To my surprise, they did take me a little early. When they took me to my room, they immediately did my bloodwork and urinalysis, then they got me out of my wheelchair and put me in my bed. My procedure was scheduled to begin around 1 o'clock in the afternoon, but due to a delay with another patient that was in the fluoroscopy suite that I was supposed to go in, my procedure didn't began until 2 PM. After positioning me on the fluoroscopy table and making sure that I was in a comfortable position, the doctor came into the room. The doctor that normally performs my procedures was not the doctor that came into the room. My doctor was working at another hospital, so Dr. Scott was the one who was going to perform my procedure. Dr. Scott's student doctor began to numb my back with the lidocaine. While injecting the lidocaine into my back, the needle on the syringe came unscrewed, and lidocaine spewed out and got all of us wet. When this happened, I immediately began laughing and Dr. Scott asked me what was so funny. I asked him if he remembered watching the Carol Burnett show back in the early 70s. He began laughing and asked me if I was talking about the skit with Tim Conway and Harvey Corman. While some of you who are reading my journal may not understand what I'm talking about, you can click HERE to watch the skit that I'm referring to. After injecting the lidocaine into my back, Dr. Scott began the procedure. While inserting the needle into my central nervous system, Dr. Scott accidentally tapped a nerve which sent a burning sensation from my left foot all the way up my left leg and it settled in my left butt cheek. While wincing from the pain, I asked Dr. Scott if he was holding my left butt cheek in his hand. This immediately resulted in laughter from not only the two doctors that were in the room, but also from the nurses and the other medical staff. Dr. Scott informed me that what I was feeling was the reaction from him tapping the nerve with the needle and that the burning sensation that I was feeling would subside. Luckily, this unusual sensation that I was feeling did subside within a few minutes. Both of the doctors did notice that there was a little blood and my cerebral spinal fluid, but Dr. Scott told me that this was because he hit that nerve and that the blood was nothing to worry about. As they withdrew more cerebral spinal fluid, the amount of blood did lessen and eventually, the CSF became clear. After removing the cerebral spinal fluid from my central nervous system, Dr. Scott injected the Spinraza into my spinal cord without any further complications. Once the procedure was over, Dr. Scott put a Band-Aid on my back and helped the medical staff role me back into my bed. I was then taken to my room, and after laying flat on my back for one hour, I was allowed to go home. Late Tuesday afternoon, I started suffering from a severe headache and quite a bit of nausea. The medical staff told me when I began my treatments, that if I started getting headaches after any of my injections, the best thing for me to drink would be black coffee. Since my headache was not going away on its own, I made some coffee and drank one large cup. I also took some activated charcoal tablets to help with the nausea. After about two hours, the coffee and the activated charcoal tablets kicked in and I started feeling much better. I'm not really sure if my headache and nausea was caused by the procedure itself or if this was something that would have happened to me anyway. While this may have been my first small setback with regards to any of the procedures that I've gone through in the past, I count my blessings that I knew what to do to help remedy these two issues.

On Thursday, I went to work out with Laura. Last week, my workout was cut short due to my abdominal muscles cramping up on me. This week, my workout went as planned and Laura even added a new exercise to my workout routine. Instead of doing crunches where I lean forward, she has me going from a seated position and leaning to my left and to my right. We only did fifteen repetitions on each side because this was a new exercise, and she didn't want me to start cramping. Next week, we will increase the number of repetitions and slowly work our way up to around two sets of fifty.

I spent the rest of the week working on my Sunday video. In my video, I discuss some of the issues that occurred while I went through my maintenance dose which I explained in the earlier paragraph of my journal. We, as patients, understand the seriousness of our procedures, but it’s also nice to know that we can interject a little humor at the right times to lessen any complications that we may encounter. Having a positive attitude is something that I’ve talked about in many of my videos, and my last procedure, I decided to practice what I preach. Click HERE to view my video.

Last week, I told everyone the two questions that my best friend used to ask me. The first question was what have you done for yourself this week that made you a better person? The second question was what had you done for somebody else this week that made them a better person? This week, I made myself a better person by going through my first maintenance dose. Regarding the second question, I helped a friend who is going through a very difficult time in his life by just being there and listening. The only thing that he needed was someone to talk to so that he could share his feelings. Having known this person for nearly thirty years, I gave him a chance to not only expresses his emotions, I was also able to give him some advice and just be there for him as a friend when he desperately needed someone to talk to. My hopes and prayers are that you did something for yourself and for someone else this week that not only improved your life, but also improved theirs. Keep a smile on your face and have a wonderful upcoming week.


Monday, Mar. 5 thru Sunday, Mar. 11 - This week has been absolutely beautiful with regards to sunny days and warm temperatures. I'm slowly starting to see the winter weather being tucked away on the bookshelf for another season. While I look forward to springtime weather, the storms and severe weather that accompany the beginning of springtime makes many of us who live in tornado alley somewhat nervous. I guess that's why we have no control over mother nature, because if we did, we would probably find a way to screw it up. My homeowners insurance and my automobile insurance is paid up, so I guess the only thing left to do is to throw my hands up in the air and just accept whatever is dealt to us. I'm scheduled for my first maintenance dose of Spinraza on Monday, March 12. It's hard to believe that it's been four months since my final loading dose. Usually, the hospital will call me on Thursday before my Monday procedure, but this time, they waited until late in the afternoon on Friday before they verified my appointment. This had me a little nervous, but once I received their call, I took a deep breath of relief. When they called, I verified that the same doctor who performed my loading doses would also be performing my first maintenance dose. It's nice to have the same doctor for each injection because you know that they already understand your particular medical situation, and it's a relief knowing that I will not have to explain my limitations to another set of doctors and nurses.

On Thursday, March 8, I went to workout with Laura. When I got there, she had to reevaluate me for my insurance. She normally reevaluates me every four weeks, which is what my insurance requires. Overall, my measurements with regards to how far I can lean forward and how far I can lean from side to side improved. The first set of measurements will measure how far I can lean forward and from side to side without feeling like I'm going to fall out of my wheelchair. The second set of measurements measure how far I can lean forward and from side to side and still be able to get back into a seated position in my wheelchair without assistance. As I stated, both of these measurements improved within the four-week time span. After finishing her reevaluation, Laura and I began doing my exercises. Before we started my crunches, my abdominal muscles tightened up on me, causing some severe cramping in my stomach. Laura just told me to complete these exercises at home. I think I got a bit dehydrated and that's what caused the abdominal muscles to cramp the way they did.

During the week, I worked on my Sunday video. In this video, I discuss three important topics. First, I share my thoughts and feelings as I go in for my first maintenance dose of Spinraza. Second, I do a brief review over the pharmaceutical companies that we’ve been talking about for the past month. Finally, I share a new feature that I added to my website. A few of you have requested that I send you a copy of some of the PowerPoint files that I used over the last month, so instead of sending these files individually as attachments in my email, I created a section on my website where you can download this information for yourself. Please watch until the end, because I also share a very important message with all of you. This message, if taken to heart, can have a profound impact on not only your life, but the lives of your family, friends and those who are most important in your life. Click HERE to view my video.

I hope this week has been a good one for all of you who subscribe to my YouTube channel and follow me on my other social media accounts. This upcoming week is going to be a good one for me because I start a new chapter in my life as I began my maintenance doses. While some people would dread the fact of having to get a lumbar puncture three times a year for the rest of their lives, I look at it as not only a new chapter in my life, I look at it as a life-changing experience that could dramatically shape the way I live my life. I've always been the type of person that looks at the glass as being half full, but now, the glass is slowly filling up. The only thing that stands in my way is my attitude, and I refuse to let that be a factor that will cause me to fail. My prayers are that each one of you have a fantastic upcoming week. As I said in my video description, please watch the entire video because at the end, the advice that I give is something that I have found to be motivational and somewhat spiritually uplifting. God bless each and every one of you.