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.


Monthly Journal - November (2019)

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Monday, Nov. 25, Through Sunday, Dec. 01 - This was one of those weeks that was filled with good news and excitement. My physical therapists and I are working on a new exercise, which I'll discuss in the next paragraph, and we also received some exciting information about a new treatment that will be passed on or before May 24, 2020. Along with all of this, I spent time with friends and family over the Thanksgiving holiday, which was something that I been looking forward to for quite some time.


When I went for my workout this week, Emily and Laura's PT students, Ashlyn and Harlene transferred me out of my wheelchair onto the therapy table. While we worked on my balance exercises, our main goal this week was to work on the abductor and adductor muscles in my legs. The abductor muscles allow you to separate your legs and your knee, and the adductor muscles allow you to bring your legs and knees back together. Emily and Laura noticed a few weeks ago that these muscles were active when they were watching me work with their PT students on some of my stretching exercises. I was moving my left leg back and forth, and they were both quite surprised that I have this capability. After talking about it with them, we decided that we would focus some attention over the next couple months on these 2 muscles in my legs. If we can strengthen the abductor and adductor muscles, this will help me when we do the assistant bridge exercise where they elevate my hips off of the therapy table and had me push forward with my legs. Unbeknownst to me, Laura was filming Emily as she worked with me on the adductor muscle in my left leg. With Emily's left hand on the inside part of my left knee, and her right hand on the outside part of my left knee, Emily was pulling my left knee toward her and my job was to resist her. Click HERE if you want to see what happened. (Watch my reaction when Emily tells me to "hold it" was she pulls my knee toward her. I never realized that I snorted when I laugh. After working on these 2 muscles, we also did the assistant bridge exercise, but my legs were pretty tired from working on these muscles during this new exercise. Next week, we will do my core strengthening exercises.


In this week's video, I discussed some exciting news regarding the possibility of the 3rd FDA approved treatment for SMA. The FDA just granted Roche/Genentech, along with PTC therapeutics and the SMA foundation, priority review status for Roche/Genentech's new potential treatment called risdiplam. I discussed this exciting news, and give you information regarding the video that I will be doing in 2 weeks to discuss the benefits of this potential treatment. This would be the very first oral treatment for those of us with SMA, and the benefits that I'm going to discuss in my video in 2 weeks will be quite surprising. Click HERE to view my video.


On Thanksgiving, I went over to a friends house to spend time with her family, her sister and her parents and some of their other extended family members. Since my parents are no longer with me, it's nice to be able to go and spend time with those that I grew up with. Kristine and Kimber or my neighbors while we were growing up, and they are more like sisters to me that anything else. I spent quite a bit of time at their house while growing up and they spent quite a time in my house. We were always closer as kids, and it's nice to know that friendships can sustain the test of time.


I added some new photos to my website, where I show you some of the exercises that I'm doing, along with a few pictures that I took during the week. Click HERE to view these pictures.


I 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, Nov. 18, Through Sunday, Nov. 24 - This was an incredible week, it seemed as if each day was filled with something to do, some days more than others, but I was busy for almost the entire week. While I went to my workout on Tuesday like I normally do, I had a chance to speak at one of the Biogen Pharmaceutical's luncheons it was held in Dallas Texas on Thursday. I pushed my body pretty hard, but it held up, in my energy was outstanding through the entire week.


When I went for my workout this week, Emily's PT student, Ashlyn, performed all my reevaluation measurements. Every 4 weeks, we have to go through all of my measurements to check my progress, so this gave her some good practice with regards to measurements and evaluating a patient with SMA. After all of the measurements of been taken, we quickly ran through the majority of my core strengthening exercises, along with stretching my legs and my hips while sitting in my wheelchair. Emily and I had time to discuss her new article that will go up on the SMA News Today HCP site on Wednesday, November 27, and late Tuesday afternoon, she sent me your article and I started preparing it to be published. While we had intended to make this a part 2 article regarding my assisted bridge exercise, Emily and Laura decided that I needed to work on strengthening the abductor and adductor muscles in my hips. Like strengthening my core muscles before starting my balance exercises, strengthening the abductor and adductor muscles in my hips will help me during the assisted bridge exercise. We will probably be strengthening these muscles for the next couple of months before resuming the assisted bridge exercise.


On Thursday, November 21, I attended the Biogen Pharmaceutical's luncheon that was held at Maggiano's Little Italy restaurant in Dallas Texas. My new Family Access Manager, Christy, called and asked if I would be interested in coming to this luncheon and talking with some of the family members there were going to be in attendance. When I got there, along with my caregiver, David, we had the opportunity to speak with quite a few people who were on the Spinraza treatment. One of the individuals that I spoke with had just completed his 3rd loading dose a UT Southwestern Medical Center's William P Clements University Hospital, the same place where I get my injections. As a matter of fact, he has the same neurologist as I do, and he has the same doctors performing his injections that I do as well. It was wanting to speak to me regarding physical therapy, and I could tell by the look in his eyes that he was excited to learn about the possibility of taking physical therapy. I told him to get in touch with will Dr. Nations, and ask her if she would give her approval for him to start taking physical therapy. I'm going to be sending him Emily and Laura's phone number at Green Oaks Physical Therapy in Irving/Las Colinas. I told him that they would be the best physical therapists for him since they already know how to work with an SMA patient. I updated my website with some new pictures of the luncheon that I attended. Click HERE if you would like to see the pictures.


Next week, I'll be uploading a video to my YouTube channel where I discuss a new potential treatment from Roche/Genentech, called risdiplam. I'll talk about this treatment, along with when I think it will receive FDA approval, and what we as SMA patients can look forward to regarding this potential treatment. This will be some exciting news that I hope that you will find interesting and informative. Be sure to watch next week's video, because the information that I'm going to give you is something that you can talk to your doctors about.


I 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, Nov. 11, Through Sunday, Nov. 17 - This was a great week, both from a physical therapy standpoint and also from a medical standpoint. My energy level as just been amazing, and I haven't felt this good at any point in my life. While some weeks are diamonds and some weeks are stones, this one was definitely a diamond.


On Monday, November 11, I went back to UT Southwestern Medical Center's William P Clements University Hospital to receive my 10th Spinraza injection. It seems funny how routine these procedures are becoming. When all of us began our treatments, there were a myriad of questions that needed to be asked and answered. The first big hurdle that we had to overcome was our insurance, and whether or not they would agree to pick up the cost of these treatments. While most of us did struggle with this issue, we found that over time, the insurance companies finally agreed. Once this hurdle was behind us, the anticipation and anxiety regarding our injections then became our major focal point. I was the injection going to be done? Was it going to hurt? Would we get stronger? What if we didn't get stronger? All of these questions were ones that we needed to answer, and unfortunately, the majority of these questions were only going to be answered over time. No doctor or nurse could tell us what to expect, and the only way to find out was to go through the procedures. My 10th Spinraza injection went flawlessly. After getting the bloodwork and urinalysis out of the way, they took me to the fluoroscopy suites, put me on the fluoroscopy table, and after positioning me, they gave me my injection. What used to take 45 minutes to an hour, now takes 10 or 15 minutes. I think a lot of this is due to the fact that the doctors and the medical staff know exactly what to do, and how to do it. It's funny to me how routine these procedures are becoming. I'm thankful for this, because it's something that I, and the majority of you that are reading my journal entry, will have to endure the rest of our lives every 4 months.


When I went for my workout this week, Emily and her staff transferred me to the therapy table and we did all of my range of motion and balance exercises. While Emily and Laura's PT students were working with me, I saw Emily and Laura staring at me and talking about me. While they both had smiles on their faces, it still made me wonder what they were talking about. I'm not necessarily a nosy person, but, this time, I tried intently on listening to what they were saying. They were talking about new exercises that they were going to start working with me on, and these exercises will involve strengthening the muscles in my legs. While laying flat on my back, they brought my feet up to the point where they were just behind my buttocks, and then with my knees together, they asked me to spread my knees apart to see if these muscles in my legs were activating. To their surprise, they felt resistance, which told them that they had something to work with. Over the course of the next few months, we will focus much of our attention on these muscles to see if I can get more movement in my legs. While I know that I'll never just be able to get up and walk, strengthening these leg muscles will help me while I'm laying in bed, and it will also help me with regards to my balance while sitting in my wheelchair.


In this week's video, I'm discussing how routine Spinraza is in my life. As I stated in the opening of my journal entry, I talk about how all of our questions had been answered over time, and just how routine Spinraza is for the majority of us. 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, Nov. 04, Through Sunday, Nov. 10 - Crazy, but super productive week, would best describe how my week went. I pretty much stayed in my office for the majority of the week, because I'm trying to stay away from anyone sick. I go back to UT Southwestern Medical Center's William P Clements University Hospital on Monday, November 11 for my 10th Spinraza injection. The only time that I got out of the house this week was when I went to physical therapy on Tuesday.


When I went for my workout this week, Emily and her PT student, Ashlyn, worked with me on my core strengthening exercises. I'm now using the black resistance band for my crutches, which proves to me that my core muscles are definitely getting stronger. After working on my core strengthening, we also did some stretching on my legs and hips while I sat in my wheelchair. While this isn't as productive as it is when I'm on the therapy table, it still stretches the muscle in my hips, which definitely helps. Next week, they'll transfer me from my wheelchair to the physical therapy table and we'll work on my balance and range of motion exercises, along with doing another set of repetitions of the assisted bridge exercise.


Next week's video will detail what happened to me during my 10th Spinraza injection, and I'll also be speaking about 2 new treatments that will be coming soon for those of us who suffer from SMA. I'll be talking about risdiplam, which is a new potential treatment from Roche/Genentech, PTC Therapeutics, and the SMA Foundation. Next, I'll be speaking about a new potential therapy from Scholar Rock, called SRK–015. Both of these potential treatments have a good chance of being passed by the FDA, so the information that I will be sharing with you, is something that you can speak to your doctors about.


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.

Monthly Journal - December (2019)

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Monday, Dec. 23, Through Sunday, Dec. 29 - Excitement, boredom, relaxed, anxious and retrospective, can be the adjectives that I use to describe this past week. On Wednesday, I went to a friends house to celebrate Christmas with their family, and on Thursday, I went for my workout. Since I was off for the last 2 weeks from BioNews Services, my days have been somewhat boring for me, because I'm not used to having a lot of free time to just sit and do nothing. While I enjoyed the Christmas holiday break, it's still something that is somewhat odd to me, because I'm so use to a certain schedule.


When I went for my workout this week, Emily and Vikki transfer me from my wheelchair to the therapy table, and we did my balance exercises first. Emily used to do perturbations on me, where she would push me forwards, backwards and from side to side so that I can work on my balance control. Since I've gotten stronger with regards to my core strength, and since my balance has improved, Emily has had to be more inventive with regards to this particular exercise. Instead of doing perturbations now, Emily is placing a folded towel under the cushion that I'm sitting on, which throws my balance off because one side is higher than the other. We do this so that my core muscles are constantly firing to keep me in an upright and neutral sitting position. We did this with the towel behind me, which forces me to keep from falling forwards, and we did the same on both my left and right side, along with placing the towel in front of me, so that I have to keep falling backwards. While this was a test and a trial for this particular exercise, I found it to be challenging at first, but after I got use to the feeling, I was able to compensate and do pretty well. We will continue with this exercise for the next month or 2, and then I'm sure that Emily will come up with another exercise to challenge my balance control. After working on my balance, Emily did all of my stretching and range of motion exercises on my hips, legs, ankles and feet. We then worked on the abductor and adductor muscles in my legs and hips. Since we are working on so many different exercises, Emily said that we will rotate different exercises every other week while I'm on the therapy table, because we need to focus on all of the muscles in my lower extremities so that I can possibly get stronger.


In this week's video, some of my subscribers and followers sent me some great questions that they had regarding Roche/Genentech's new potential treatment known as risdiplam. I picked out 3 questions that I'm answering in this video, and I will answer the other questions in future videos that will be coming up in the next month. These are the questions that I believe all of us are going to have with regards to risdiplam, and the video that I will be doing in the coming months will also address some very important topics that you need to know about so that you can discuss these with your family members and doctors. Click HERE to view my video.


Since we didn't produce any new flash briefings for BioNews Services during the holiday break, I went ahead and left the flash briefings up that we did the week before. Next week, we will only have the flash briefing for Friday, but after that, we should be back to our normal schedule Click HERE to go to the flash briefings.


I hope that all of you had a Merry Christmas and a happy holiday season, and I'm wishing all my subscribers and followers a very happy new year. My hopes and prayers are that you and your family members will have a prosperous and happy 2020. 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.

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Monday, Dec. 16, Through Sunday, Dec. 22 - Beginning on Friday, December 13, I had some vacation time that I needed to use for my job at BioNews Services. Since my work schedule kept me so busy this past year, I was unable to use my vacation time during the summer months, so I decided to take the week off before our holiday break that we normally take it BioNews Services. The last time that I took a week off from work was when I moved into my new house back in 2001. I've never really enjoyed vacation time, because I enjoy being around people and working, so I decided that I would sleep in a little later each morning and try to get some rest before the new season started. My energy level and strength have been phenomenal, and I'm really looking forward to a wonderful 2020.


When I went for my workout this week, Emily did all of her evaluation measurements on me that she does every 4 weeks. This was the first time that I got to work out with Emily by herself since September, so it was nice to be able to spend some time with her. I was considering having some chiropractic work done on my neck, and a chiropractor that I'm talking to met with me and Emily along with my other physical therapist, Laura, and discussed some of the things that he could do to possibly help me with my neck. I'm still considering as to whether or not I want to do this, but it's something that I'll consider over the next month or 2. After taking all of my evaluation measurements, Emily and I had time to perform a few of my core strengthening exercises. Next week, I'll be going physical therapy on Thursday due to the holiday season, and Emily and Vicki will transfer me from my chair to the therapy table and we will do all of my balance and range of motion exercises.


The response that I received to last week's video on my YouTube channel was unbelievable. I've had some great responses from members that follow my YouTube channel, and I will also receive numerous emails with regards to other questions regarding Roche/Genentech's potential treatment called risdiplam. I'm doing another video for next week that will answer these questions, and I'm hoping that these videos will not only answer your questions, but it will also give you the information that you need to talk to your doctors about. The next 4 or 5 months are going to be very interesting for those of us that are looking for new treatments for rare disease, and it's going to be an exciting time for all of us.


I'm going to start utilizing my Instagram account more, because I can now put videos in the IGTV section. IGTV stands for Instagram Television, and this will allow me to put videos that are longer than one minute up on my Instagram account. While I'm not too thrilled with the size of the videos, it should still allow me to share information via my Instagram account along with my web. Click HERE to go to my Instagram account, and look for the images that have the IGTV symbol on the top right hand corner.


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


I hope that all of you will have a Merry Christmas, and I look forward to bringing you some great information regarding SMA in 2020. Please 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, Dec. 09, Through Sunday, Dec. 15 - Since BioNews Services is going to be close for the holiday season after Friday, December 20, I chose to take a week off before this, so that I could have an extended vacation. By doing this, it exponentially increased my workload, because I had to make sure that everything that I was responsible for was accomplished before leaving for vacation. While this made my week go by very quickly, it also forced me to do some of the things that I may have been procrastinating in doing. My energy level through the week was unbelievable, and overall, this was a fantastic week.


When I went for my workout this week, Emily and Vikki transferred me from my wheelchair to the therapy table. I haven't been able to work out with Vikki in quite some time, so it was nice to be able to do my workout with both Emily and Vikki together at the same time. All 3 of us have a great time, and it's nice to be with people that you enjoy being with. We did all of my normal balance exercises, but we are also doing more isometric exercises. Instead of them pulling me or pushing me in a certain direction while I'm balancing as I sit, I'm having to lean as far forward and backwards, and from side to side as I can, which really works the abdominal muscles. After this, they laid me down on my back and did my normal range of motion and flexing exercises on my hips, legs, knees, ankles and feet. After this, Emily and Vikki, along with Laura, worked with me on rolling from side to side, and we focused much of our attention on my abductor and adductor muscles in my legs and hips. After this, we also had time to do a few repetitions of the assisted bridge exercise, where they elevate my hips and I try to push my body forward with my legs, using my glutes, quads and abdominal muscles.


In this week's video, I discussed some exciting news regarding a 3rd potential treatment for those of us with SMA. While this video is a little longer than most, I go over quite a few of the benefits that I see regarding Roche/Genentech's possible new treatment known as risdiplam. Risdiplam is going to be the first oral treatment for those of us with SMA, and I talk about the many advantages that we will see if and when this treatment is approved by the FDA. Click HERE to view my video.


I 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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Mon, Dec. 02, Through Sunday, Dec. 08 - This was an extremely productive week. Trying to get everything finished up for the end of 2019 in my personal life and with BioNews Services is definitely a task, but as of right now, everything's falling into place like I hoped. My energy level and strength have been extremely good, and if I can avoid getting sick through the rest of this year, I can say the 2019 was a success.


When I went for my workout this week, Laura's PT student, Harleen, worked with me on all of my core strengthening exercises. We did all of our normal exercises with the resistance bands and all of the isometric exercises that we've been doing, but we added just a bit more difficulty with regards to my reverse crunches. Now, instead of sitting straight up and then leaning forward and then pulling back, I now start at a 20° angle. This exercise is quite a bit more challenging, but this really works my abdominal muscles, which will help me to not only keep my balance in my wheelchair, it will also help me reposition if I need to during the day. Next week, Emily and Vikki will transfer me from my wheelchair to the therapy table, and we will do all of my balance and range of motion exercises. Now that Emily doesn't have a physical therapy student for the next month or so, Vikki will be assisting Emily, and it'll be nice to work out with her again.


I'm currently working on next week's video, which will include some exciting information regarding Roche/Genentech's new potential treatment called risdiplam. The FDA just granted Roche/Genentech Priority Review Status for risdiplam, and there's a lot of excitement in the air regarding this potential treatment. My video next Sunday, will go over how risdiplam will work, and I will give my opinions as to the benefits that those of us with SMA could see if we choose to use this treatment if and when it gets passed by the FDA.


I added some new photos to my website, so please be sure to check them out. Click HERE to view these pictures.


I 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.