Monthly Journal - May (2020)


Monday, May 18, Through Sunday, May 24 - As I sit here writing my journal entry for this week, I'm watching dark clouds roll over my house, and I can hear the faint noise of thunder in the background. Last Saturday, when the weatherman said that we were going to get about an inch of rain, we actually got just a little over 5 inches of rain. Wouldn't it be nice to be a weatherman? You can be wrong 95% of the time and still keep your job.

Today would've been my father's 87th birthday, and as much as I wished that he was still here with me, I know that he's in Heaven with my mother, his beloved wife. I know that they are looking down on me keeping me safe, and knowing that they are together, makes this a very special day for me. I love you mom and dad, and I'll see you someday when my chores on earth are done.

This week, when I went for my workout, Laura and her PT student, Danny, transferred me from my wheelchair to the therapy table. They let Danny transfer me, and Laura helped to guide me onto the table to make sure that I made it safely. While it's difficult to trust a new PT student with this for the first time, Danny is extremely strong, and I knew that I was in capable hands. For the next 8 weeks, I will be working with Laura and Danny, while he finishes his 2nd rotation before he takes his board exams to become a doctor of physical therapy, or a DPT. Even though I'm not working out with Emily right now, she was still there and helped out during my balance exercises. Once they got me positioned on the therapy table, Danny stood behind me and did perturbations by pushing me forward, backwards and from side to side. Laura was standing in front of me to make sure that I didn't lose my balance. To make things more interesting, Laura, Danny and Emily started shaking the table to get me me to lose my balance. To my surprise, and even to the surprise of all 3 of them, I kept my balance and had no problems with these exercises. After completing these balance exercises, Danny and Laura laid me on my back and they proceeded to do all of my stretching and range of motion exercises. Once this was complete, we did my long sitting exercises with my feet in front of me. While doing this, Danny and Laura shook the table to try to get me to lose my balance, and after doing this for a few seconds, Emily grabbed my smart phone and took a quick video of what they were doing. I uploaded this video to my Instagram account. Click HERE to view my Instagram account and click on the video of me sitting on the table.  (This video is somewhat embarrassing for me, because it doesn't look like that they're shaking the table very hard, but trust me they are. Also, it looks like my back is supported by the back of the therapy table, but neither Laura or Danny were touching me in any way, and the back rest of the therapy table was about 6 inches away from my back.) Next week, Danny will do all of the measuring that's needed for my 4 week reevaluation, and we will do all of my core strengthening exercises.

There's not really too much more to report with regards to risdiplam at this time. Roche/Genentech are still waiting for the FDA to get their approval, and while the tentative date for this approval is scheduled for August 24, I believe the announcement from the FDA will come toward the end of July, or the first 2 weeks in August. My next video will probably be next Sunday, and I'm going to give my advice with regards to talking to your doctors about risdiplam, and some things that you may want to ask them. Risdiplam is going to be a major player in the SMA treatments, and I'm excited to see how this pans out for all of us.

I hope that all of you had a great 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'm hoping to see you next week.


Monday, May 11, Through Sunday, May 17 - During this past week, I woke up each morning wondering where all of my energy was coming from. It's funny how all of us go through good and bad days with regards to our energy levels and our physical strength, but lately, I feel as if I have more energy than I used to. While I never look a gift horse in the mouth, I'm hoping and praying that this energy level continues.

This week, when I went for my workout, I started working with Laura again. Laura was my first physical therapist that I started with back in October 2017. When she left for maternity leave to have her son, I then started working with Emily. While I'm still Emily's patient, I'm going to be working with Laura for the next 12 weeks so that I can let her do student work with me. He's about to graduate with his doctorate in physical therapy, otherwise known as a DPT, and I'm the first SMA patient that he is dealt with. Both Laura and Emily give me the opportunities to work with your students so that I could not only introduce them to SMA, it gives them a chance to work with patient who has this particular disease. I consider it an honor to do this, because the more knowledge that the students know regarding SMA, the better that they'll be able to deal with an SMA patient if they see one in the future. Since I didn't get his permission to use his name on my website in my journal entry, I will refer to him as Laura's PT student. He worked with me all of my core strengthening exercises, and also stretched my legs and hips while I sat in my wheelchair. Next week, they will transfer me from my wheelchair to the therapy table and do all my balance and range of motion exercises, and we will focus much of our attention on my flexibility. During my workout, Emily gave me the fantastic news that she and her husband are expecting their first child. She's not due until November, and after I finish working out with Laura's PT student in 12 weeks, Emily will again become my primary physical therapist until she has to go on maternity leave. She did assure me that when she returned from maternity leave, she would again be working with me on a more regular basis. I've always been nervous about not being able to continue my physical therapy, since I've been doing it for nearly 3 years, but both Emily and Laura understand that my physical therapy is a lifelong commitment for me, and even though Laura will be leaving around August, to move to Houston, she said that the new director that will be taking over their outpatient clinic will allow me to continue my physical therapy without any interruptions.

I've added 2 new options to my website that should make it easier for those who follow me and read the information that I'm putting on my website. I've added the option where you can send me a message, and I've also added the new option for a pop up message, which will make it easier for me to give you information that may be important to you. I'll try this out for a few weeks to see how it works.

I just produced a new video for the SMA News Today YouTube channel, where I speak about how to talk to your doctors regarding Roche/Genentech's new potential treatment known as risdiplam. I've given all of my followers and subscribers to my YouTube channel this information before, but once this video goes live on the SMA News Today YouTube channel, I'll be sure to put this is a pop up message so that you can go and watch it again if you would like to.

I'm hoping that all of you had a fantastic week, and I asked me to do something for yourself this upcoming week, that will make you a better person. I also hope and pray that you and your families are staying safe and healthy, and I look forward to talking with you again next week.


Monday, May 4, Through Sunday, May 10 - This is been an incredible week with regards to everything that I had to do, and everything that I accomplished. My energy level has been phenomenal, and I feel so incredibly blessed. It's weeks like this, that make me appreciate all of the work that I put into not only my career, but also my health and well-being.

This week, when I went for my workout, Emily and Laura transferred me from my wheelchair to the therapy table. Going into my workout, I was actually somewhat sad, because this would probably be the last week that I would get to workout with just Emily and Laura together. Beginning next week, Laura is going to let me work with her new PT student that is about to graduate with his doctorate of physical therapy, or DPT. This means, for the next 12 weeks, I'll be working with her student, and probably won't be able to workout too much with Emily. Laura was my first physical therapist when I started back in 2017, and since she's going to be moving to Houston in the next couple of months, my workout on Thursday was the last time that I would get to work with Emily and Laura together during my physical therapy session. In the opening of my journal entry, I said that I had a phenomenal week, and this was capped off with doing something that I haven't been able to do in nearly 40 years. Emily and Laura wanted me to work on my "long sitting", which basically means sitting on the therapy table with my legs in front of me. This is very difficult, because of the amount of atrophy in my hips and my knees, but as we did this exercise, I found that I was able to do this without too much difficulty. With a smile on my face, I looked at both of them and asked if we could try crossing my legs, in more of an "Indian style" position. I had tried this quite a few months ago, but my knees would not allow me to do this. Since we've been working on my flexibility and my range of motion in my legs, I thought I would try again. To not only my surprise, but also Emily and Laura's surprise, I was able to accomplish this without any problems. The picture located on the left-hand side of my journal entry is the picture we took. I know that it seems somewhat minuscule to be as happy as I am, but given the fact that it had been 40 years since I was able to do this, I knew that my physical therapy was starting to show some benefits with regards to the flexibility in my legs.

In this week's video, I'm announcing a change with regards to my YouTube channel. Over the past 3 years, I've been documenting my journey with regards to my treatments, and while producing these videos, I've learned an extraordinary amount of information regarding not only Spinraza, but other treatments that have become available to those of us with SMA, along with other potential treatments that we could see in the not so distant future. Since I'm now working full time for BioNews Services, my schedule has become extremely busy, and since we've covered the gamut of topics regarding SMA, I'm going to be scaling back on the number of videos that I upload to my YouTube channel. I started out my channel with a video every week, and then moved to every other week with regards to my uploads. Now, I'm going to be uploading to my YouTube channel when I find information that I think you need to know, and this may mean that I only upload every 3 weeks or even once a month. Click HERE to view my video.

I will continue uploading my journal entry on a weekly basis, and if you have any questions, please feel free to either respond below one of my videos, or send me an email. I promise to answer each and every questions. I hope that all of you 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 soon.