Monthly Journal - October (2019)

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Monday, Oct. 28, Through Sunday, Nov. 03 - Mundane, normal, uneventful and routine. These are the 4 adjectives that basically described this past week. My week was filled with conference calls and work for BioNews Services, and the only time that I left the house was when I went for my workout. Some weeks are busier than others, and this past week, while it wasn't very exciting, it was good.


When I went for my workout this week, Emily let her physical therapy student, Ashlyn, transfer me from my wheelchair to the therapy table. This was the first time that Ashlyn had transferred me, but Emily was there by her side to make sure that everything went as it should. We started working on my balance exercises, and then went and did all of my stretching and range of motion exercises on my hips, legs, knees, ankles and feet. After Laura's physical therapy student, Harley, worked on the muscles in my neck, she and Ashlyn did the assisted bridge exercise with me. Emily and Laura were there observing, and Emily stated that she saw my glutes and my quads activate several times during this exercise. I was able to push myself up on the table a few times, but again, this is going to be a work in progress that will take many months. Other then the one workout that I did where I didn't get very good results with regards to the assisted bridge exercise, things that started smoothing out and while I'm not getting a lot of movement, I am seeing some progress.


In this week's video, I'm discussing how difficult it may be for some of us with SMA to find a physical therapist. The majority of physical therapists have probably never worked with a patient with SMA, and the fear of the unknown, to make it difficult to find one that's willing to work with you. I share my knowledge with regards to finding a physical therapist, and I also discussed my lecture that I did at UT Southwestern Medical Center's School of Physical Therapy. I had the honor and privilege of talking to the doctorate students who are about to graduate either in December of this year, or May 2020. 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.

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Monday, Oct. 21, Through Sunday, Oct. 27 - Last week was unbelievable. I was honored to be the guest speaker at UT Southwestern Medical Center's School of Physical Therapy on Wednesday, October 23. I was given the opportunity to speak to the doctorate students who would be graduating in December with their Doctorates of Physical Therapy (DPT). Their associate professor, Doctor Leslie Nelson, asked me to speak to them about SMA and the benefits of physical therapy for those who suffer from this disease. In next week's video, I'll be sharing some pictures that we took during my lecture, and explaining what I talked about.


When I went for my workout this week, it was time for my 4 week reevaluation. Emily's PT student, Ashlyn, did the majority of my reevaluation, with Emily by her side to make sure that everything was done correctly. One of the hardest things for any PT student to learn, is how to take measurements during any type of evaluation. These measurements may seem simple, but every patient presents different challenges, and we have found over the past couple of years, SMA patients present a challenge that the majority of PT students, and even seasoned physical therapists may find challenging. After we did the reevaluation, Ashlyn and Laura helped me with my core strengthening exercises. Next week, they'll transfer me to the therapy table and we will work on not only my balance and range of motion exercises, we will also be doing the assisted bridge exercise that I spoke about last week.


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 next week.

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Monday, Oct. 14, Through Sunday, Oct. 20 - When I woke up on Monday morning, I decided that I was going to have a great week. The previous week had been somewhat depressing, but I decided to take my own advice, which I spoke about in last week's journal entry. To my surprise, my advice actually worked. My week was wonderful and my physical therapy went much better than it had the previous week. My energy level was outstanding the entire week, and I felt I had enough energy to do anything that I wanted to do.


When I went for my workout this week, Emily and Laura, along with Emily's PT student, Ashlyn, transferred me from my wheelchair to the therapy table. This was the second week in a row that we were going to work on all of my balance and range of motion exercises, because when Emily was out on vacation, a couple of weeks ago, we had to alter my workout routine so that Laura would not have to transfer me. I will say though, I really did enjoy working on my balance and range of motion exercises 2 weeks in a row. My balance is getting much better, and now, I can pretty much hold my own with regards to being able to stay upright during all of the perturbation exercises. Now, even while Emily does the perturbations on me, Laura, or one of their PT students is getting on and off of the table, causing the table to lean to one side. This definitely makes my balance exercises more difficult, but it's a great workout. It's also rather funny to see 3 people climbing on and off of the table, along with Emily pushing me forward, backwards and from side to side. I've said this before, but it really does look like an evil sadistic game that they're playing with me. After finishing all of these exercises, Laura and Emily performed the assisted bridge exercise that I spoke about last week. Once they got me in the proper position, and after they elevated my hips, I was able to move my body forward on the therapy table a couple of times. Although I'm only moving my body about 1/8 of an inch, I'm still moving my body, and this slight movement is exciting for me. Emily is going to be doing a series of articles for the SMA News Today HCP website, and we're going to be tracking my progress and reporting on the positives and negatives of this new exercise. Her next article is scheduled to be published this coming week, and I'll provide a link to this article in next Sunday's journal entry. I'll also have some updated pictures with regards to this new assisted bridge exercise, and I will post these to my website next week.


On Wednesday, October 23, I'll be the guest speaker at UT Southwestern Medical Center's Physical Therapy Department. I'm going to be speaking to over 40 students who are about to graduate with their Doctorates of Physical Therapy. I'm going to be speaking about spinal muscular atrophy and the benefits of physical therapy. I'm going to be talking about my physical therapy routine, and some of the benefits that I've seen since starting my physical therapy. I taught college for over 18 years, and I really miss the classroom environment, so I'm excited to get to go and speak with the students. Hopefully, this will be an opportunity that they will let me do every year. I'll have someone taking pictures during my lecture, and I will also be recording the lecture for SMA News Today. We will probably be featuring this audio recording in one of our upcoming podcasts, and when this happens, I will provide a link in my website so that those of you who subscribe to my YouTube channel and follow me on my social media platforms, and my website, so that you can go out and listen to it.


In this week's video, I'm discussing some exciting news from Biogen Pharmaceuticals, regarding their Spinraza treatments. Biogen is considering increasing the dosing amounts of their Spinraza treatments. Currently, those of us who receive our Spinraza injections, are receiving 12 mg, and in this new study, called DEVOTE, Biogen is considering increasing the dosing amounts of our Spinraza treatments by over 100%, and in some cases, over 400%. This is exciting news for all of us who are on our Spinraza treatments. In the description section of my video, I provide the link to the article that was published on the SMA News Today website, along with the link to the DEVOTE trial. Click HERE to view my video.


I've updated the flash briefing 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.

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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.

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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.