Monthly Journal - February (2021)

Monday, Feb. 22, Through Sunday, Feb. 28 - I had an extremely productive week, which is both surprising and alarming. Surprising, because he usually doesn’t happen, and alarming, because when things are going really well, I usually get somewhat nervous. Anyway, at least I survived another week, and by the grace of God, I’ll have another one.

When I went to workout this week, Emily and her 2 PT students not only had to do my reevaluation, they also transfer me from my wheelchair to the therapy table. The reevaluation only took Emily about 10 minutes, which was a new record. Once they transferred me to the therapy table, we worked on balance for about 10 minutes, and then the rest of the time was spent working on my hips and my flexing exercises. Surprisingly, we actually finished a little bit early, so Emily wanted me to try sitting on the table in a position that they call long sitting. This is where I sit with my legs in front of me, which is normally very difficult for me to do, given the fact that my hips have so much damage. When they sat me up, it didn’t take me too long to gain my balance, which was surprising to both me and Emily. With both legs in front of me, I was able to easily maintain my balance, and even when Emily and her PT students did perturbations, I was still able to maintain my balance. We then took my left leg and folded it toward my body, leaving my right leg extended. While this was a little bit more difficult, I was able to gain my balance and keep my balance without any problems. We then extended my left leg, and folded my right leg toward my body, and again, I was able to maintain my balance. This part of the exercise was very surprising to me, because in the past, this is been a very difficult exercise for me to do.

In this week’s video, I discuss some exciting news regarding Scholar Rock’s potential therapy, once known as SRK-015, now known as apitegromab. Scholar Rock released their 6-month interim data last year, and they are scheduled to release the results of their TOPAZ trial in June 2021. This is not only the first muscle targeted therapy, it’s also going to be one of the first combination therapies for SMA. They are currently testing it in combination with Spinraza, and if the results as they release in June are positive, which I do believe they will be, those investment SMA they finally have the opportunity to start building muscle mass. Click HERE to view my video.

In a couple of weeks, I’m going to be doing a video regarding my current condition while taking Evrysdi, and I’m also going to be making an announcement that may surprise quite a few of you. It’s all good news, but it’s a decision that I’ve had to make over the past couple weeks which was very difficult, and I wanted to share my announcement so that everyone would know exactly what’s happening with me.

This upcoming week is filled with conference calls and copious amounts of work that I have to do with BioNews. I’m hoping that all of you had a fantastic week, and I ask that you do something for yourself this upcoming week, that’s going to make you a better person. God bless you, and I’ll see you in a couple weeks.

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Monday, Feb. 15, Through Sunday, Feb. 21 - This was one of those weeks that I would love to forget. The snow and the ice that I mentioned in last week’s journal entry came in with a vengeance, and the temperatures in the Dallas-Fort Worth Metroplex, were the coldest that we’ve seen in over 75 years. I’ll mention more about this in just a moment.

Unfortunately, I wasn’t able to go to physical therapy on Tuesday due to the ice and the amount of snow that we received. As a matter of fact, the physical therapy clinic that I go to, was closed on Monday, Tuesday and Wednesday. I’m sure if I would’ve been able to get there on Thursday, they probably would’ve been able to see me, but the roads in my area were still treacherous. The one thing that I never want to do is to miss physical therapy, but mother nature was the one in charge. I called and spoke with them on Thursday, and they told me that we could resume my normal physical therapy schedule on Tuesday, February 23.

On Sunday, February 14, the conditions in my area started deteriorating very quickly around 4 PM. Heavy pockets of snow started falling, and before long, my front and back yards looked like a winter wonderland. What made it worse, was that the snow was only supposed to last through the night, but it continued most of the day on Monday, and the road conditions throughout Texas became impossible to drive on. What made matters worse, was that Monday morning, our power went out. They were supposed to be doing rolling blackouts, where the power would only be out for about an hour, but instead, the power was only on for about an hour, and then we had no power for 8 or 10 hours. I contacted my local fire department, and they told me that if the power was still out in my house, they would come by and help me get into bed. The hoist that I use to transfer me from my wheelchair to the bed is electric, so when the power is out, it doesn’t work. Luckily, the power came back on for about an hour around 8:30 PM. This gave me enough time to get into bed, which meant that I didn’t have to call the fire department. The power remained out until Tuesday around 11:30 AM, but we also heard that the power would probably be out all day on Tuesday. We made the judgment call to just leave me in bed all day Tuesday, wrapped up in 4 heavy blankets. The temperature in the house never got below 50°, but people with SMA already have a difficult time regulating their body temperatures, so this made it extremely uncomfortable for me. These power outages affected everyone from the Dallas area, all the way down to Houston and even some that were on the Gulf Coast. Let’s just say that there are a lot of very upset people in Texas with regards to the energy company, and the governor of Texas, Greg Abbott, has already said that there will be a full investigation as to what happened. I personally hope that they find the people that were responsible for not winterizing the generators, which was the main reason why we had such a long and extensive power outage.

Next week’s video will be discussing some exciting news regarding Scholar Rock and their new potential treatment. They’ve announced that they will release the data from their TOPAZ trial, sometime in June of this year, and if the data is positive, which I believe it will be, we can possibly see our first muscle targeted therapy for SMA patients either later this year for the first quarter of 2022. This will be a video that you won’t want to miss.

I hope all of you had a great week, and I asked that you 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, Feb. 08, Through Sunday, Feb. 14 - With the threat of severe weather and heavy snowfall predicted for the Dallas-Fort Worth Metroplex, this has caused a lot of concern. It hasn’t been above freezing in my area for over 10 days, and later this evening and throughout the night, the weather forecast is predicting anywhere from 3 to 8 inches of snow. Trust me, for a boy that was raised in Texas, this kind of forecast is both exciting and scary. You’ve probably heard that Texas is the land of rednecks, and every one of these rednecks that live in my area, will be out driving in this bad weather, so my plans are to stay at home.

When I went for my workout this week, Emily and her PT students transferred me from my wheelchair to the therapy table, and we worked on my balance and range of motion exercises. We’re going to be focusing a lot of attention on my hip flexors over the next few months, so I’m hoping to see some improvements.

In next week’s video, I’m going to be sharing some exciting news regarding Scholar Rock, and give you some information regarding their TOPAZ trial. This will be some great information that you can share with your family, friends and your doctors.

I hope that all of you are staying safe and healthy during these winter months, and I ask that you 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, Feb. 01, Through Sunday, Feb. 07 - Overall, this is been a great week. All of my individual business plans and budget for work have been completed, and the last thing that I have to do this upcoming week is to present this material to the COO, CEO and the other Senior Directors. My energy level has been very good this past week, and my physical therapy is really starting to help me with regards to some twitching and spasming in my right forearm.

When I went for my workout this week, my physical therapist, Alex, performed another procedure on my arm using dry needling. We did this procedure a couple weeks ago with some great success. The brachioradialis muscle in my right arm has been twitching and spasming to the point where it’s actually interfering with the way that I do my job and live my life. The first dry needling procedure that we went through calmed this muscle down, and for the first 5 days after the procedure, this muscle didn’t twitch or spasm. When the twitching iand spasming did return, it was less severe, and it didn’t last very long. Last week, Alex performed the same dry needling procedure, only this time, she used electrical stimulation. [The image to the left of my journal entry shows this electrical stimulation procedure] We plan on doing this a few more times over the next month, then we will scale back to see if the twitching and spasming returns. If it does, we will continue the dry needling procedures on an as-needed basis. Next week when I go in for my workout, Emily and her 2 PT students will transfer me from my wheelchair to the therapy table so that we can work on balance and range of motion. Emily also said that if my brachioradialis muscle is twitching, she will do some deep tissue massage to help alleviate some of this twitching.

In this week's video, I discuss this procedure that I’m going through in physical therapy called dry needling. Over the past 6 months, my physical therapists have been stretching my right arm and elbow to help increase the range of motion, and by doing this, we’ve upset a muscle in my arm called the brachioradialis muscle. This muscle helps to flex the elbow and “pronate” or rotate the arm. We filmed 2 procedures that I went through; one with dry needling and one with dry needling with electrical stimulation. I’ve seen some great results after these procedures. Click HERE to view the video, and click HERE to view the pictures.

In my next video,  I discuss how Scholar Rock recently released their 6 month interim data from their TOPAZ trial, and give further information regarding the TOPAZ trial that's due to be released in June, which is exciting news for all of us who have SMA.  

I hope all of you had a fantastic week, and that you and your friends and family are staying safe and healthy. 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.