Monthly Journal - March (2020)


Monday, Mar. 23, Through Sunday, Mar. 29 - This was an extremely difficult week for me emotionally, and coupled with the Coronavirus information, it's just one of those weeks that I wished had never happened. While I know that I'm not the only one going through these difficult times, just trying to keep focused was extremely difficult.

Over the weekend, I began thinking about everything that I was going to be missing out on, but the scariest thought that I had was that I would not be able to go to physical therapy. Being stuck at home really isn't that big of a deal to me, because I work from home anyway, but the thought of missing physical therapy weighed heavily on my mind. When I contacted Emily via email on Monday morning, I asked her her opinions, and whether or not they were going to be open. She immediately wrote me back and said that they were considered essential medical, and that they would be open. I asked her if she thought it would be wise for me to come in and take my physical therapy, given all of the news regarding the virus. She quickly assured me that they would make sure that I would be the only one taking physical therapy at their facility during that time, and she promised that everything would be okay, but she left the ultimate decision up to me. I trust my life to both Emily and Laura, so I felt comfortable telling her that I would come in as long as she felt comfortable working with me. She said that she would have no problems working with me, so on Thursday, I went for my physical therapy, and I'm extremely glad that I did. Vikki is no longer working for Green Oaks Physical Therapy, so Emily and Laura transferred me from my wheelchair to the therapy table, and Emily did all my balance exercises and range of motion exercises with her PT student, Teresa. Just getting out of the house and being around Emily and Laura made me extremely happy. They were glad to see me, and I was thrilled to see them, because over the past couple of years, we've all built a friendship, and this friendship means the world to me. It's that one day out of the week that I can get out of the house and socialize, and while physical therapy is important to my body, the socialization is probably just as important for my mindset.

Like most companies, BioNews Services is going through difficult times, and unfortunately, we had to release quite a few forum moderators, columnists and editors. Since I'm the Senior Director of Multichannel Content for BioNews Services, I had to reduce my division, just like the other directors with their respective divisions. I ended up reducing the workforce in my division by nearly 56%, but as things get better with regards to the economy, I will probably be able to bring most of these forum moderators back. While it was difficult to have all of these conference calls to let these moderators know about their jobs, every one of them took it with professionalism and grace. While this made me feel better about what was going to happen to them, I still felt sad about having to deliver this kind of information. I taught college for 18 years, and probably failed about 10 or 15 students in this 18 year. I had no problems failing the students because they either quit showing up, or never did any of their work. When I work for ExxonMobil, I had to terminate employees because they never came to work, or their work was sub-par. Terminating or releasing individuals like this are not difficult to do, because they're the ones that set their own destiny. The forum moderators that I had to release on Monday were all outstanding individuals who did nothing wrong, other than being caught in a financial situation that's affecting countless companies around the world. The saving grace is that I will be able to bring most of these individuals back as the economy improves, but it was still a very difficult week.

Next week's video is going to cover a potpourri of topics that revolve around the Coronavirus and things that we can do as patients with SMA to keep ourselves safe. I'm also going to be discussing some information regarding Roche/Genentech's potential treatment known as risdiplam, and I'll be giving you my opinions with regards to some other information that I think is important for you to know.

I hope that all of you had a wonderful week, and I ask that you not only do something this week to make yourself a better person, my hopes and prayers are that you, your families and loved ones remain safe and healthy during these uncertain times. God bless you, and I'll see you next week.


Monday, Mar. 16, Through Sunday, Mar. 22 - Coronavirus, Coronavirus, Coronavirus - It seems that this is the only thing that anybody is talking about. Idiots going to the store and purchasing 500 packages of toilet paper, and more water than they would ever need in a lifetime. I am in no way trivializing or minimizing the issues surrounding this virus, but good God people, you're not going to be stuck in your house for 6 months. If people use a little bit of common sense instead of trying to be doomsday activists, all of us would be better off.

When I went for my workout this week, Emily was back from her vacation, and we went through my 4 week reevaluation process. After that, we spent the majority of the time stretching the muscles in my hips and legs, and then Emily hooked me up to a machine that compressed my left foot while pumping in ice water to relieve some of the swelling. While the topic of the Coronavirus did come up, it was mainly to talk about all of the idiots out there that were doing stupid things, instead of using common sense. While the physical therapy clinic that I go to is not going to shut down, they have reduced the amount of hours that they are working each day, and they are taking precautions and doing extra cleaning and sanitizing after each patient finishes their session. Next week, Emily and Vikki will transfer me from my wheelchair to the therapy table, and I'm hoping that we can resume more normal activities.

In this week's video, I'm answering 2 questions that were sent to me regarding Roche/Genentech's potential treatment called risdiplam. Currently, risdiplam is under FDA review, and should be passed in either April or May, to become the 3rd FDA approved treatment for those of us with SMA. The questions that I'm going to be answering in my video are ones that I feel that you should speak to your family and doctors about, because since we may only have another month or two before this treatment becomes a reality, these questions will help you possibly decide on whether or not risdiplam will be right for you. Click HERE to view my video.

I hope that all of you, including your family and friends, have had a wonderful week. Please be safe over the next month, and while I'm not telling you to hibernate in your house the entire time, please do exercise caution when you know that you're going to be around other people. Also, 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.


Monday, Mar. 09, Through Sunday, Mar. 15 - I was really hoping for a relaxing week, where everything fell into place. After going to the hospital to receive my 11th Spinraza injection on Monday, March 9, my entire week became filled with Coronavirus topics and all of the nervousness that surrounds this virus.

Monday morning, I left my house around 10:15 AM CST, and headed toward UT Southwestern Medical Center's William P Clements University Hospital. I was scheduled to receive my injection at 1 PM CST, but as always, they want me there no later than 11:30 AM CST so that they can do all of the bloodwork and urinalysis tests. After getting there, and after they transferred me from my wheelchair to my bed, the bloodwork and urinalysis took place. After they sent these to the lab, they started doing all of the prep work for the procedure, and while asking me all of the usual questions and getting all my vitals, the technician came in and said that they were ready for me. Even though I wasn't scheduled for the procedure until 1 PM CST, they took me into the fluoroscopy suite around 12:40 PM CST. After getting in the fluoroscopy suite, Dr. Scott came into the room and after we spoke for about 2 or 3 minutes, they transferred me from my bed to the fluoroscopy table and got me in position. From the time that they numbed my back with the lidocaine, to the time that it took Dr. Scott and his student doctor to perform the procedure, I was back in my bed in less than 10 minutes. Everything went as expected, and there were no complications. When they took me back to my room, my caregiver was there with a large cup of coffee, and while I laid on my back for one hour, I drank the coffee and tried to relax. After they release me from the hospital, I went home and did some work, and then went to bed around 6:30 PM CST.

When I went for my workout this week, Emily was on vacation, so I got to work out with my first physical therapist, Laura. Laura had to quit working with me when she was pregnant with her first child, so it had been a while since I had a chance to spend some time with Laura during my physical therapy. While she's always there when I work out with Emily, this was the first time in about 6 months that I actually got to spend the entire time with Laura. She and Vikki transferred me from my wheelchair to the therapy table, and after we did my balance exercises, they laid me down on my back, and Laura began doing all of my stretching and range of motion exercises. She noticed that I had just a bit more swelling in my left ankle that I normally do, so Laura put an ice machine on both of my feet and ankles, and they ran ice water through this machine which also compressed my ankles and feet at the same time. While it was extremely cold, it actually felt good, and I think we will do this on a regular basis. Next week, Emily will be back, and I will resume my workouts with her.

As most of you are well aware of, the coronavirus has been a topic that's been on everyone's mind, and a hot topic that's been on the news. As soon as Pres. Trump banned all flights from Europe, everyone went to the store and started hoarding as much bottled water and toilet paper as they could. When my caregivers went to the store this week, they said it looked like something out of a horror movie. All of the shelves were bare, and people were actually getting into arguments and fighting over food that was left on the shelves. While I fully understand the implications and ramifications of the coronavirus, I just don't understand all of the panic that seems to be happening. Researchers and doctors are telling us that 80% of the people that catch this virus will probably not even know that they have it. They may feel somewhat sluggish, and they may run a low-grade temperature, but for the average able-bodied healthy person, it's not going to be as noticeable as what they fear. The elderly, and those of us with upper respiratory and lower lung functions will be the ones who are in the most danger. Over the next couple weeks, I will probably isolate myself to the house, and avoid getting out. At this time, my physical therapists are telling me that they will continue to see me on my normal Thursday sessions, but given the fact that everyone is panicking, and making it sound like that this is the end of the world, the physical therapy clinic may not be open next week when I go in. Only time will tell, but I'm hoping that things will return to normal in the next couple weeks.

In next week's video, I'll be answering a few questions that I think are relative to Roche/Genentech's treatment called risdiplam. While these were questions that I received in my email from my subscribers and followers to my YouTube channel, I think of this as more common sense regarding this potential treatment, and I think you'll understand what I mean when you watch my video next week.

I hope that all of you had a fantastic week, and I hope this upcoming week, you do something for yourself that will make you a better person. God bless you, and I'll see you next week.


Monday, Mar. 02, Through Sunday, Mar. 08 - Tension, anger, anxiety, weakness and frustration are all adjectives that I could've used this week. While I was hoping that this would be a good week, it just seems like nothing worked out for me during Monday through Friday. The only bright spot to my week was my physical therapy. Luckily, when the weekend started, everything seemed to turn around, and started getting back to a more normal routine.

In a video that I did quite some time ago, I said that I wasn't experiencing any lethargic feelings as I approached my upcoming Spinraza injection, but I have to say, the past 2 weeks have been frustrating. My right arm is extremely weak, and my energy level has been almost nonexistent. I guess my body really is craving its next Spinraza injection, which comes this coming Monday, March 9. I'm checking myself back into UT Southwestern Medical Center's William P Clements University Hospital for my 11th Spinraza injection, which will actually be my 7th maintenance dose. I didn't experience these lethargic feelings between my 5th and 6th maintenance doses, but this time, these lethargic feelings have really kicked my ass. Fingers crossed that my energy level and strength comes back after my next injection.

When I went for my workout this week, Emily and I worked on my core strengthening exercises. Since it had been a while since I've been stretched, Emily focused a lot of attention on working on my hip muscles while I was sitting in my wheelchair. She also did an ice treatment on my right knee, to relax the tendons. She iced my knee down so much, my knee was numb for about 10 minutes. We did this last week and this week, and my right knee is now back to normal. Next week, Emily will be on vacation, so I'll be working with Laura and Vikki, and they will transfer me from my wheelchair to the therapy table. This will be the first time that I've had a chance to work with Laura in quite some time, and I'm looking forward to spending some time with her. She was my first physical therapist, and while she makes me work hard, I value both her knowledge and her friendship.

In this week's video, I'm discussing another biopharmaceutical company by the name of Scholar Rock, and their potential treatment known as SRK-015. I discuss how this treatment will impact our bodies, and how it differs from Spinraza, Zolgensma and risdiplam. Click HERE to view my video.

As I said in the opening, I go back to the hospital on Monday for my next Spinraza injection. I'm sure that everything will go well, and I'm just wondering if this may be my last Spinraza injection. After the injection that I'm going to receive on Monday, my next injection will be in July. By that time, Roche/Genentech's new potential treatment known as risdiplam might be approved by the FDA, and once it gets approved, my neurologist and I are going to start filling out the paperwork necessary to get me started on this oral treatment. While I know that Spinraza has done wonders for my body, I'm at the age to where I'm willing to switch treatments to see if there's any changes with regards to my physical condition. Risdiplam has received outstanding reviews, and I'm hopeful to be on this new treatment before July of this year.

I hope that all of you have had a fantastic week. Please 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.