Monthly Journal - October (2019)


Monday, Oct. 7, Through Sunday, Oct. 13 - It's not often that I have a bad week, and as much is I preach about not letting a bad day turn into 2 or 3 bad days, I found myself falling into the category of those who allow this to happen. On Monday, everything was going great. On Tuesday, I hit a brick wall that made me stop and think.

When I went for my workout this week, Emily and Laura transferred me from my wheelchair to the therapy table. We began by working on my balance exercises. It'd been quite a while since Laura had worked with me on my balance exercises, and she told me that my balance had improved quite a bit. With Emily behind me, and one of their physical therapy students in front of me, they shook the table to try to throw me off balance. While I did lose my balance a few times, I was surprised at how well I did.  After this, they laid me down on my back and began my stretching and range of motion exercises in my hips, legs, knees, ankles and feet. After doing the balance exercises and range of motion exercises, this is when I hit that proverbial brick wall that I wrote about in my opening. Laura and Emily placed a sheet under my back and slid it down to my hips. After lowering the physical therapy table all the way down, Laura stood above me on my left, and Emily's physical therapy student stood above me on my right. We were going to be performing the same exercise that I spoke about last week, called an assisted bridge. With Emily holding my feet flat on the therapy table, Laura and Emily's PT student lifted my hips off of the therapy table. At this point, I was to try to squeeze my glutes and my quads to see if I could push myself toward the top of the therapy table. We did this exercise the first time, 3 weeks ago, and I was actually able to push my body forward. While I was only able to push my body forward by about 1/8 of an inch, I was still moving in a forward direction. When we did this exercise 3 weeks ago, I was able to move my body forward about 8 times during this exercise. The excitement that I felt after doing this exercise for the first time was unbelievable. When I went for my workout this week, I was excited to try this again. Unfortunately, my excitement was short-lived. They performed the assisted bridge exercise on me about 10 times, and I was only able to move my body forward 1 time. As much as I tried, I was unable to see the success that I had the first time we did them. While I didn't necessarily show my disappointment during my physical therapy, it actually depressed me quite a bit for the rest of the week. It bothered me because I was hoping for the same amount of excitement, and to not see the success that I had the previous week, completely changed the way I felt for the rest of the week. Both Laura and Emily were supportive and told me not to worry about it. They said that I would have good weeks and bad weeks. While I may not have shown my disappointment during my physical therapy, I could tell that both Emily and Laura knew the way that I felt, and that's the reason why they were trying to encourage me. Unfortunately, their encouragement didn't seem to register in my mind like it should have. I always preach to people that you should never let 1 bad day, turn into 2 or 3, because it can easily consume the rest of your week. There's an old adage that says "preacher, heal thyself," and I found myself guilty of this. It wasn't until Friday that I started to hear Emily and Laura's encouragement in my head. I thought back about how disappointed I was and remembered their encouraging words. Yes, I should've heard these words when they said them, but I didn't. After thinking about this for quite some time, those words of encouragement brought me back to a more peaceful state. We live in a "now" generation, meaning that we want results now versus later. I myself am guilty of living in this generation. If SMA has taught me anything, it's taught me that I'm not the one in control. My mindset has always been that I have SMA, but SMA doesn't have me. Reality tells me otherwise from time to time. While Friday was the day that I came back to my senses, I really felt that I lost a couple of days of my life. I need to make sure that this doesn't happen again, because life doesn't ever guarantee you anything. Thinking back on it, I guess another reason why I was somewhat depressed this past week, was that Thursday, October 10, was the 4th anniversary of my father's death. If my father had been here, he would've kicked me in the ass and told me to snap out of my depression. My parents always taught me that anything worth doing, is worth fighting for, and there's a lot of fight left in me, so while I may get depressed from time to time, I need to remember my own words.

In next week's video, I'm going to be talking about some exciting news regarding Biogen Pharmaceuticals. They recently made an announcement that will affect all of those who are on their Spinraza treatments, and the information that I will be sharing with my subscribers and followers will be great news.

I've updated the flash briefings that I do for BioNews Services. Click HERE to go to the flash briefings.

I hope that all of you had a fantastic week. If you're having a bad day, remember what happened to me this past week. Don't fall prey to what I preached about for a long time. Again, I may need to listen to my own words, LOL…. Do something for yourself this upcoming week that will make you a better person. God bless you and I'll see you next week.


Monday, Sept. 30, Through Sunday, Oct. 6 - After all of the excitement that happened a couple weeks ago, this week was relatively mild and quiet. Everything fell into place, and the only time that I left the house was when I went to physical therapy on Tuesday, and when I went back to UT Southwestern Medical Center for my PT evaluation so that I could get re-certified for my Spinraza treatments for 2020. Those were the only 2 times that I left the house all week. I always say that I'm going to go out and do something and get out of the house, but I never do. If you've ever seen the movie Groundhog Day, you'll know exactly what I'm going through. One day seems to be just like the next. Hopefully this upcoming week will be a little bit more eventful.

When I went for my workout this week, Emily was on vacation, so I got to work out with Laura, who was my first physical therapist when I started back in October 2017. Laura had been on maternity leave, and after returning, she's been working out with me along with Emily for the past couple weeks. With Emily being out on vacation, I got to work with Laura's physical therapy student, Harlene. She and Laura performed all of my core strengthening exercises with me, so unfortunately, there's not too much to report. My neck muscles seem to be much stronger than they used to be, because Laura made a comment that when she was watching me do my side to side exercises, I didn't have to stop because of my neck. It used to be that my neck would give out after leaning over for too long, now, my neck muscles are stronger and I'm able to hold my head up for a longer period of time while leaning either forward or from side to side. Next week, when I go back for my workout with Emily, she and Laura want to do the assisted bridge exercise with me again. This is where they lift my hips up off the therapy table and have me push with my legs. Laura said we may use neuromuscular electronic stimulation on my quad muscles, but I'll learn more about this next week.

In this week's video, I'm discussing some very important hip and leg exercises that I'm doing during my physical therapy each week. Since being diagnosed with severe muscle and nerve damage in my right hip and leg, these exercises that I'm talking about, along with the video that I did for Emily for her HCP article, I demonstrate how we do these exercises, and the benefits that I've seen since starting these particular exercises. Click HERE to view my video.

I've updated the flash briefings that I do for BioNews Services. Click HERE to go to the flash briefings.

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 a couple weeks.