Monday, January 28, Through Sunday, February 3 - If you read my journal entry last week, you know that I've been asked to be the guest speaker at UT Southwestern Medical Center either in September or October of this year. I'll have the honor of speaking in front of all of the physical therapy students that are going after their DPT, or their doctorates of physical therapy, and I will be discussing spinal muscular atrophy and the benefits of physical therapy. This will be the first time that I've done public speaking in quite a while, and I'm very excited to get back into this role, because I feel that public speaking is something that I need to do so that I can help spread the message of the benefits that those of us that are taking physical therapy will see while we take our Spinraza treatments. This past week has been extremely busy for me, regarding my job. My energy level and my strength have been phenomenal this week, and while it's hard to believe, I go back to UT Southwestern Medical Center in one month to receive my next injection.
A few of you sent me emails last week asking why I'm now working out with Emily instead of Laura. Emily and Laura have worked together for quite some time, and Emily has worked out with me a few times in the past. The reason why I'm now doing my workouts with Emily is because Laura and her husband are expecting their first child. Transfering me from my wheelchair to the therapy table and helping me with some of my exercises was getting to be a bit more challenging for Laura, because she didn't want to overstress or be as physically active because of safety concerns for herself and her child. When I found out that Emily was going to be working with me, I rearranged my schedule so that instead of going to physical therapy on Thursdays, I would be going on Tuesdays. This made it easier for Emily, because, like Laura, she has to spend the entire hour with me while we do my workouts. Tuesdays was also a better day for Emily, so I switched my workouts to better suit her schedule. Laura is off on Tuesdays, but after she has her child, and of course has time to recover, I will be able to work out with either Emily or Laura. Emily is a PTA, which stands for physical therapy assistant. She can do everything that Laura can do, with the exception of the initial evaluation and the final evaluation before patients can be released from physical therapy. Since my physical therapy will be an ongoing activity for the foreseeable future, Emily will be not only working with me on my leg exercises, she will also be helping me with my core strengthening, along with doing my four week reevaluation's. Emily is a lot of fun to work out with and I look forward to continuing my workouts with her. My prayers are that Laura and her husband will welcome a healthy baby either in July or August. When I went to work out on Tuesday, Emily and I worked on my core strengthening exercises, and next week, she will transfer me from my chair to the therapy table and work on my balance exercises and my range of motion exercises on my legs, knees, ankles and feet.
In this week's video, I discuss my annual physical therapy assessment that I went through a few weeks ago at UT Southwestern Medical Center in Dallas Texas. Those of us that are on active treatment with Spinraza, have to go through an annual assessment so that our results can show an increase or decrease in strength while we are undergoing our injections. I discuss how my assessment went, along with some other exciting news that I received while going through my assessment. Click HERE to view my video.
NOTE: I made an addition to my website that I hope will like. As most of you know, I work for a company by the name of BioNews Services. BioNews is the parent company, and they have multiple forums for rare diseases, and one of my responsibilities as Forums Director for BioNews Services, is to manage these forums. Recently, I received a promotion, and I'm not only their Forums Director, I am also their Multimedia Director. One of my primary responsibilities as their Multimedia Director, is to create all of their flash briefings, and to oversee the creation of their podcasts and YouTube videos. The flash briefings that we produce for the SMA News Today forum, can be listen to on any Amazon Echo device. We also upload these flash briefings to our SoundCloud, Spotify and iTunes channels. I have added links to these flash briefings so that you can listen to them on your computer. We produce three flash briefings every week, on Monday, Wednesday and Friday. Each week, I will be including the links to the three flash briefings that we produce, and I hope that you will take time out of your day to listen to them, because they give great information on news related topics within the SMA community, along with perspective pieces from either myself or my coworker, Kevin Schaefer. Click HERE to listen to these 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 Sunday.
Monday, January 21, Through Sunday, January 27 - Like last week, this week was extremely busy. While I was scheduled to go to physical therapy on Tuesday, I also had an appointment at UT Southwestern Medical Center on Thursday for my annual physical therapy assessment so that I can continue with my Spinraza treatments. The assessment that the physical therapist performed on me was basically core strength and upper body range of motion. Since they never performed this assessment before my Spinraza treatments, this was considered my baseline assessment. The physical therapist that performed this evaluation on me, was the same lady who conducted the physical therapy seminar during the 2018 Annual Cure SMA Conference, which was held in June 2018 in Dallas Texas. When I went into the room to meet the therapist, we both recognized each other. She's also one of the instructors at UT Southwestern Medical Center's Physical Therapy department. After my assessment, she told me that I did well, and then told me that in the Fall semester, they bring in lecturers to discuss different diseases. She asked me if I would be interested in speaking with the group of physical therapy students about physical therapy and those of us with SMA. I told her that it would be my honor to do this, because I feel that physical therapists, in the coming years, will see many more patients with SMA than in the past, and they need to be aware of what our requirements are with regards to building new muscles and getting stronger. There's a lot of apprehension with regards to working with people with SMA, because physical therapists have never really had to evaluate and workout with those of us who suffer from this disease. The one thing that I'm going to stress during my lecture is that we deserve just as much of a chance of getting stronger as anybody else, and that physical therapy students should not be afraid to work with us. I will tell them that we are not china dolls, and that they're not going to break us. My lecture will happen in September or October of this year, 2019.
When I went to my workout on Tuesday, my new physical therapist, Emily, and her assistant, Vicki, transferred me from my wheelchair to the therapy table. In the picture in my journal, you see us working on my balance exercises. The first thing that I do after transferring from my wheelchair to the therapy table is to sit unassisted, without any support on my back or my sides, for a total of 15 to 20 minutes. Now that I've strengthened my core muscles, sitting unassisted is quite easy. Now, Emily will push me forward, backwards, and from side to side while I'm sitting on the table. With Emily sitting behind me, I can't anticipate what she's going to do, so when she pushes me forward, backwards, or from side to side, my job is to regain my balance and get back into a neutral sitting position. We've been doing this exercise for just over one month, and while it was difficult at first, I'm finding that it's easier each time that we do it. Emily said that my core muscles are responding well, and this is making it easier for me to regain my balance. While I still lose my balance every once in a while, these exercises are becoming easier. While this looks like a sick sadistic game that Emily and Vicki are playing with me, it definitely has a purpose, and it's actually quite a bit of fun. Click HERE to view the other pictures of my balance exercise workout.
In this week's video, I discuss my new balance exercises that I’m doing during my workouts with my physical therapists. While performing this exercise during my last workout, we took pictures, and I put a small narrative to these pictures so that I can further explain the benefits that I’m seeing regarding my balance. Those of us with SMA, have difficulty sitting unassisted. Sitting in our wheelchairs are easier because we have our back rest and our armrests to help support us, but sitting without any support on our back or our sides, can be very difficult. After working on my core strengthening for the past 6 months, I’m now able to sit on the edge of the therapy table without any support, and the exercises that my physical therapists are using on me, have not only increased the muscles in my core, my balance is exponentially better. Click HERE to view my video.
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 Sunday.
Monday, January 14, Through Sunday, January 20 - What a crazy and busy week this was. I can't speak for everyone, but it seems when I get extremely busy, like I am now, the days seem to be shorter. A few times during the week, I would've worked all the way through the day without eating lunch, if it hadn't been for my caregiver reminding me that it was time to eat. A couple of times during the week, when they came in and told me it was time for lunch, I just looked up at the clock and sat there in amazement wondering how the day had passed by so quickly. It's almost eerie to think how fast these days seem to be going. My energy level and my strength were extremely good all week, and right now, everything seems to be going well.
When I went to my workout on Tuesday, Laura was out for the day, so I got to workout with Emily. Since this was my four week reevaluation day, Emily took all of the measurements necessary for this reevaluation. During my last reevaluation in December, I told everyone that I was not pleased with the results that I got. During my reevaluation this week, my numbers improved and I felt much better about my progress. Click HERE to view the results of my last reevaluation. After completing all of the measurements, Emily and I worked on my core strengthening exercises, which involved my crunches for my abdominal muscles, and we also worked on the muscles in my neck. The reevaluation process takes about 30 minutes, so while we didn't have the entire hour to focus on my core strengthening, we did those exercises that were most important. When I go for my workout next Tuesday, Emily and Laura will transfer me from my chair back to the therapy table so that we can work on my legs, knees, ankles, feet and toes. We will also be working on loosening the muscles in my neck as well.
In this week's video, a few of you have written me emails, asking me what I do for a living, so I thought this would be a good time to explain to everyone exactly what I do. I’m privileged enough to work for a great company, that allows me to work from home and to provide for my family. The Internal Revenue Service does not necessarily care that I have spinal muscular atrophy, but they do care whether or not I pay my taxes. With this being said, having a job is something that I’m extremely thankful for. In the description of the video, I list all of the web links for the forums that I manage, along with the YouTube channel that we use for all of our videos. Click HERE to view my video.
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 Sunday.
Monday, January 7, Through Sunday, January 13 - This has been one of those weeks where I felt as if I could conquer the world. My energy and strength levels has been incredible. The slight weakness that I experienced a few weeks ago in my neck has disappeared, and my energy level and even the strength in my arms has felt fantastic. I fully understand that I'm going to hit rough patches, and have those occasional weak days, but I'm finding those days are becoming fewer and fewer. I've been eating high-protein meals and have been taking my protein shakes, so I guess a combination of my Spinraza, my workouts with Laura and Emily, my dietary habits and my protein shakes are really starting to pay off.
I was scheduled to go to physical therapy on Tuesday, but due to a mix up with my insurance, I wasn't able to go in until Thursday. Since this is the beginning of the new year, we had to make sure that I would be covered for my physical therapy throughout 2019. I had been assured by my insurance that I could continue with my physical therapy, we just had to wait on some answers from my primary care physician before we could continue. After spending nearly 4 hours on the telephone with my primary care physician and my insurance company, we finally got everything worked out and I was able to return to physical therapy on Thursday. Knowing that I'm good to go for another year gives me a lot of enthusiasm and hope. When I went to my workout with Laura and Emily, they transferred me out of my wheelchair onto the therapy table. Once I was properly positioned, and I gained my balance, we began working on the exercises that work my core muscles. While Laura was standing in front of me, Emily stood behind me and began shaking the table to try to throw me off balance. When we first started doing this exercise a few months ago, this was difficult for me to do, because even the slightest shake of the table would cause me to lose my balance. After about two minutes of shaking the table, Emily began pushing me forward, backwards and side to side with her hands to tried to get me to lose my balance. They both commented how good I was doing with regards to not falling backwards or from side to side. While Emily wasn't pushing me very hard, it was still encouraging that I was able to maintain and keep my balance throughout this exercise. When Emily would push me forward, this exercise was a little bit more difficult to do. While I maintained my balance throughout the majority of the exercise, I did reach that tipping point where I wasn't able to recover. Luckily, both Laura and Emily grabbed me and helped me back into a balanced position. Overall, they were both very impressed with how much my balance has improved, and I contribute a lot of this to the fact that we worked so hard on strengthening my core muscles. As my core muscles strengthen, this will help me keep my balance during this first part of my exercise. After completing the balance portion of my workout, they laid me down on my back and began the range of motion and stretching exercises on my legs, knees, hips, ankles, feet and toes. As I stated in last week's journal entry, these exercises are becoming more tolerable. When we first started these range of motion and stretching exercises on my legs, it was very uncomfortable. Now, I'm finding that these exercises actually feel good. My feet, ankles and toes are another story. These used to be extremely excruciating for me to go through, but now, as we stretch these ligaments and muscles, it's not nearly as bad. It still more painful than working on my legs and my hips, but it's getting easier each time that we do it, which gives me a lot of encouragement that these exercises are working as well. After Emily finished my leg exercises, she then started the rotation exercises on my neck. This is probably the best part of the therapy for me, because while either Laura or Emily work on my neck, I find it to be very relaxing. If only the other parts of my exercises and workout routines were as relaxing. Next week, I go through my next four week reevaluation, and I'm hopeful that my numbers have improved. I will post the results of my reevaluation on my website next week and will also update everyone on my video that I post to my YouTube channel on Sundays.
In this week's video, I’m going to be discussing my opinions as to whether or not you should begin taking Spinraza now, or wait until AveXis gets their drug, ZOLGENSMA, approved through the FDA to take this drug into treatment status. When ZOLGENSMA does become available, it will only be for infants that are nine months of age or younger, that have been diagnosed with SMA Type I. Over the past month, I’ve received emails from a few of my subscribers and followers asking my opinions as to whether or not they should get their infants involved in Spinraza or wait until ZOLGENSMA becomes available. These are very difficult questions for me to try to answer, but I do give my own personal opinion as to what I would do if I had an infant that was diagnosed with SMA type I. Click HERE to view my video.
Monday, December 31, Through Sunday, January 6 - 2018 was full of surprises, both exciting and disappointing. The exciting surprises were how much better I fealt with regards to my core strengthening and my overall energy level, along with how much better I feel in general with regards to my future. The disappointing surprises were those moments in 2018 that caused me some concern. I was surprised at how weak I was after I got out of the hospital with pneumonia, but then realized that my recovery would've taken much longer if I hadn't of been on Spinraza and hadn't of been taking physical therapy. While it took me nearly 3 weeks to recover from my bout of pneumonia, my Spinraza treatments and my physical therapy allowed me to recover much faster. But, there were still a few days where I felt lethargic and weak, which actually surprised me. While these may have been a few depressing days during the year, my strength recovered quickly so that tells me that something is working in my favor.
Like 2018, I will be going back for another year long series of physical therapies with Laura and her team of physical therapists. We do one week of core strengthening, then we do one week of range of motion and flexing exercises in my legs, hips, knees, ankles and feet. While I would actually love to take physical therapy every day, this is not a possibility. I will say though that doing these exercises on a weekly basis with Laura has definitely paid off and I feel much better. I'm looking forward to seeing what type of progress I make during this year, and both Laura and I are hopeful for great success. When I went to my workout this week with Laura, we worked on core strengthening exercises, which included my crunches, reverse crunches and my neck exercises. The muscle that controlled my head from falling forward is slowly getting stronger, and this past week, instead of Laura pushing my head forward with the palm of her hand, she is now using resistance bands. We started using resistance bands a few weeks ago, but we were doing isometric exercises. When doing these isometric exercises on my neck, Laura would apply pressure with the resistance band, and my job was to hold my head from moving forward for a total of two minutes. Now, Laura is applying resistance with the band, and my job is to push my head backwards against the resistance of the band itself. Even though we are on the yellow resistance band, which is the least amount of resistance we can get, as this muscle strengthens, we will move to the other colors of resistance band which will increase the amount resistance that I'm having to pull against. These may be small baby steps for some, but it's still a challenge for me and I'm working hard at it. Next week, they will transfer me out of my wheelchair back to the therapy table and start working on my legs again. Even though working on my legs and my feet is somewhat uncomfortable from time to time, it is getting better and I'm able to make it through the workout without sounding like a five-year-old girl. I may want to scream a few choice words during my workout, but then again, I'm sure everybody in my condition would probably be reacting the same as I am.
In this week's video, I’m going to try to clear up some confusion that’s floating around the Internet regarding the differences between an IV administered treatment and an IT administered treatment. Those of us that are receiving our Spinraza treatments are receiving them through what is known as an IT, or intrathecal type of delivery system. When AveXis gets their drug, ZOLGENSMA, passed by the FDA in May 2019, to become the second FDA approved treatment for those of us who suffer from SMA, they will be using an IV administered treatment. The questions that are being asked are what are the differences between these two types of delivery systems, and why these delivery methods were chosen by the pharmaceutical companies for those of us that will be receiving them. Click HERE to view my video.
I hope that all of you had a fantastic Christmas and a happy new year. Do something for yourself this upcoming week that will make you a better person. God bless you and I'll see you next Sunday.
Monday, February 25, Through Sunday, March 3 - As bad as the previous week had been, this past week was a complete 360° turnaround. Everything fell into place and for some reason, nothing earth shattering happened. My job with BioNews Services is keeping me extremely busy and I couldn't be happier. The owners of the company came to Dallas on Tuesday, and they came by the house and we had a few hours so that we can sit and talk about future plans for the company and potential growth opportunities for my division. I'm now their Director of Multichannel Content, and I oversee all audio and video products that we produce throughout the company. While my plate is full, you will never hear me complain about being too busy. I know people who complain about their jobs and they hate the people that they work with, but you will never hear that coming out of my mouth. The owners of the company are aggressive with their growth plans, and making me an integral part of this company has proven to me that hard work does pay off.
When I went in for my workout with Emily on Tuesday, we worked on all of my core strengthening exercises. Everything seems to be going great with regards to physical therapy, and it seems that my exercises are getting easier each and every week. While I know I have a long way to go, the feelings that I am experiencing with regards to strength are exciting. As soon as one exercise gets to be too easy, Emily comes up with another one that challenges me. I've been lucky to have Laura and Emily as my therapists. Next week, Emily and Vicki will transfer me from my wheelchair to the therapy table and we will work on my balance exercises. Emily is going to start using a therapy ball as part of my balance exercises. She will place the therapy ball on my side, and while my arm is on the therapy ball, I have to lean to one side and come back into a neutral sitting position. This really works the core muscles along with the muscles in my neck. While we did this exercise nearly 2 weeks ago, we will begin multiple repetitions on both my left and right side beginning next week. Emily told me that she is also going to put the therapy ball in front of me, and have me lean forward and come back to a neutral sitting position as well as using the therapy ball on my left and right side. As I said earlier, as soon as I get comfortable with one exercise, they hit me with a new one. This continually challenges me and I can tell that my core strength has definitely improved. Next week when I go in for my workout with Emily, I will take pictures of us doing these new exercises, and I will put these pictures together in a video on my YouTube channel next Sunday. Along with working out, I'm also preparing to go back to UT Southwestern Medical Center for my eighth injection of Spinraza. My appointment is for Monday, March 11. I will discuss this in greater detail in next Sunday's video.
In this week's video, I discuss a question that many of us are going to be facing in the coming months. With the potential approval of ZOLGENSMA from AveXis Pharmaceuticals, in May or June of this year, those of us on Biogen’s drug, Spinraza, will be faced with the decision as to whether or not we should forgo the Spinraza treatments and began ZOLGENSMA, or remain on Spinraza. In my video, I give you my opinion as to how I feel regarding this potentially life-changing decision, and I share my thoughts on how I’m going to approach this decision. Click HERE to view my video.
Monday, February 18, Through Sunday, January 24 - This was an extremely frustrating week for me. It's not often that I let something upset me for the entire week, but this was one of those weeks that got under my skin, and it made me so angry, I had a hard time letting go of it. I talk about this in great detail in my weekly video, but this frustration revolved around the topic of getting SMA added to the state list in Texas for newborn screening. SMA was added to the national registry in the United States for newborn screenings, but it has to be adopted at the state level before the screenings can begin. My video not only discusses my frustrations, I also give my advice to my subscribers and followers on what to do to ensure that SMA is added to their state list for the screening of SMA on newborns. This topic is dear to my heart because we are so close to eradicating SMA in infants, I find it frustrating and somewhat nerve-racking that our government officials are moving so slowly with regards to this topic. I've never been a big proponent of government, and the brick wall that I hit this week regarding adding this disease to the newborn screening listing Texas, only reaffirmed my belief that government and our governmental officials have no earthly clue as to what they are doing.
When I went in for my workout with Emily on Tuesday, both she and Vicki, her assistant, transferred me from my wheelchair onto the therapy table. The week before, while Emily was doing my four week reevaluation, she told me that she was going to come up with a few new balance exercises for me to do while sitting unassisted on the therapy table. After transferring to the therapy table, we did our normal balance exercises where Emily would push me forward, backward and from side to side to try to throw me off balance. These exercises are getting easier for me to do because I've noticed that my core strength is improved to the point to where I'm able to keep my balance without too many difficulties. The new exercise that we are doing involves Emily putting a therapy ball on my side, and I have to rest my arm on the ball and lean to that particular side. After leaning to that particular side, I then have to get myself back into a neutral sitting position. Emily stabilized my arm on the ball so it would not fall off, and as I began these exercises, while I found them somewhat challenging, I was surprised at the ease at which I could accomplish my goal. The first couple of times that I did this, I thought Emily was helping me get back into a neutral sitting position, but she told me that the only thing that she was doing was stabilizing my arm so that it wouldn't fall off of the therapy ball. This surprised me because this meant that I was recovering my balance on my own without any help from her. We did this on the left side first and then transfer the therapy ball and repeated this exercise on my right side. Leaning to my left and recovering was easier than leaning to my right side. When sitting in a neutral position, my right hip is a little higher than my left hip, so leaning to my right to begin the exercise was a little bit more difficult than leaning to my left. Emily and Vicki helped me lean to my right to get started on the exercise, but I was able to recover and get back into a seated position without too much difficulty. This exercise, with the therapy ball, really works the abdominal muscles and the muscles in my sides. While we only did a few repetitions on each side, we will increase the amount of repetitions as we progress from week to week. The next time that we do these exercises with the therapy ball, I will take pictures and put them on my website for you to see. After finishing all of my balance exercises, Emily and Vicki laid me down on my back and Emily began working on the range of motion and flexibility exercises in my legs, knees, ankles, feet and toes. During my last reevaluation, I stated that both of my legs were now at a -23° bend. While this is still a substantial amount of bend in my legs, my right leg use to have a -40° bend when we first began, so both Emily and I are please that both of my legs are now at the same level. Emily works my right leg a little more than my left because all of the damage in my hip is on my right side, so by working out my right leg harder than my left, this has not only improved the amount of negative degree bend in my right leg, it is also helped the damage in my right hip because after my exercises, and after I transfer back from the therapy table to my wheelchair, my right hip feels great for the rest of the day.
In this week's video, I discuss a topic that completely ruined my week. A few months ago, I did video where I discussed how SMA had been added to the national registry in the United States for newborn screenings. While SMA was added to the national registry, it still needs to be adopted by each individual state to become effective. Some of the information that I was able to get completely blew my mind, with respect to the complexity and difficulty it takes to get this disease added at the state level so that doctors can begin screening newborns immediately after their birth. This subject is dear to my heart, because we are so close to eradicating SMA in these little infants. I give you my advice on what to do and I ask all my subscribers and followers to please take action on this as soon as possible. Click HERE to view my video.
Monday, February 11, Through Sunday, February 17 - It seemed that everything fell into place this week like a well-crafted jigsaw puzzle. I think the most surprising thing that happened to me this week was the way that I felt. My energy level was phenomenal and it seemed like I have more strength in my right arm. I know this may sound odd, but I measure my arm strength by how easily I can get my vapor stick up to my mouth. I usually have to set my right hand on top of my desk with my vapor stick in it, then leaned forward to get the biggest into my mouth. Throughout this entire week, I could lift the vapor stick up high enough to get it in my mouth without having to use my desk as a support. My neck muscles feel stronger, my right arm feels stronger, and my overall energy this week has been somewhat surprising. I go back to UT Southwestern Medical Center in about three weeks for my next injection of Spinraza. Usually, with about two or three weeks left before my injection, my body starts to slow down in my energy level begins to slow down. I'm finding it somewhat surprising that my energy level and my strength is as great as it is considering that I'm about to go in for my next injection. Maybe my body is getting used to some of the changes that I'm trying to make to it, because I haven't felt fatigued for a week and some time now.
When I went in for my workout with Emily on Tuesday, we had to do my 4 week reevaluation. This normally takes about 30 minutes, but this time, it only took Emily about 15 minutes to perform this reevaluation. Both Emily and I were surprised at the results that we got, and you can see my test results on my website. Click HERE to view my test results. Overall,My test results came out better than expected. When I first began the exercises on my left and right leg, we took measurements with regards to the amount of negative degrees that my legs are bending. When we started in October 2018, my left leg had a -27° bend, and my right leg had a -40° bend. After working on the stretching and range of motion, along with the ligaments and tendons in my knees, both the legs are now at -23°. While this may not have been a major improvement in my left leg, both Emily and I agree that the amount of correction that we have received on my right leg has been substantial. The amount of dorsi flexion in my left foot and right foot have also improved, with the largest improvement coming in my left foot. When I started in September of last year, the dorsi flexion in my right foot was -28° and it was -34° in my left foot. Last week, the amount of dorsi flexion in my right foot was -27°, and I had -26° in my left foot. Both Emily and Laura recommended that I get the dorsi flexion braces for each foot, and when I received these braces, I will wear them a few hours each day, which will hopefully better correct the amount of negative degrees in my feet. The rotation inside bending in my neck have also improved, with the greatest improvement coming when I rotate and bend my head to the left. The amount of degrees that I could rotate and bend my head from side to side will fluctuate, depending on how tight these muscles are during the reevaluation. Overall, Emily and I were extremely pleased with the results that we got and we will continue to work hard to improve these numbers. When I go for my workout next Tuesday, Emily will transfer me out of my chair and work with me on my balance exercises, along with the stretching and range of motion exercises on my knees, legs, ankles and feet.
In this week's video, I share some of the information that I found regarding the combination therapy between Cytokinetic’s drug Reldesemtiv, and Biogen’s treatment Spinraza. I also share the results I received in my four week physical therapy reevaluation. Click HERE to view my video.
Monday, February 4, Through Sunday, February 10 - I blinked my eyes, and the week was gone. I wish somebody could explain to me how come time is going by so quickly. My job with BioNews Services is keeping me extremely busy, so I'm sure that this has something to do with that. My energy level throughout this past week has been phenomenal, and I felt wonderful all week long. As a matter of fact, I was so busy this past week, my right hip hasn't been hurting me like it normally does. That makes me think that when I'm not busy, that's what I focus on, and that's the reason why my hip is hurting.
When I went in for my workout with Emily on Tuesday, she and Vicki transferred me from my wheelchair to the therapy table. In my last video, I made a statement that I was going to cause a scene where the other patients could hear me and I was going to ask Emily not to push me off the therapy table like she did a couple of weeks ago. Of course, Emily never pushed me off the table, but I thought it would be funny to say that. Like I said in my video last week, I had second thoughts about this and I never did what I said I was going to do. You will find that you want to keep your physical therapist as happy as possible, because if you don't, you may not like the results. After getting on the therapy table and gaining my balance, Emily and Vicki worked with me for about 20 minutes on my balance exercises. Emily pushed and pulled me in different directions, and this was a great workout for my core muscles. Emily is being a little more aggressive with how she pushes me, because my balance has improved to the point to where the exercises that we do are not as difficult as they used to be. Emily has to push me much harder now to get me to lose my balance. Eventually, we will start working on these exercises a different way, I will have to lean forward as far as I can and come back into a seated position, similar to the exercises that I do in my wheelchair. By leaning forward and holding this position, my core muscles, especially my abdominals, are constantly being activated. After doing these balance exercises for about five minutes, I begin to get sweaty. By the time we are finished, my shirt is literally ringing wet. After working on my balance exercises, Emily and Vicki laid me down on my back and we began working on the range of motion and stretching exercises on my legs. These exercises are going great. I'm able to tolerate Emily working on my feet and ankles much better than I used to. Some of this may be due to my swelling not being is bad, but Emily thinks that we are getting a little bit more range of motion regarding being able to flex my feet up toward my body. Either way, this exercise is not as grueling as it used to be. Next week, I go back in for my four week reevaluation. I will post these numbers to my website next week.
In this week's video, I discuss a couple of topics. First, I made a change to my website to include all of the podcast and flash briefings that I help produce for my employer, BioNews Services. I have included the podcast and flash briefings on my website so that my subscribers and followers will have access to them. Then, I review some of the information pertaining to a combination therapy between Cytokinetic’s drug, Reldesemtiv, and Biogen’s drug, Spinraza. They are currently testing these two drugs in a combination therapy for those of us who suffer from SMA. Click HERE to view my video
Monday, March 18, Through Sunday, March 31 - The past two weeks have been anything but normal. Two weeks ago, I posted a video where I talked about my recent maintenance dose injection of Spinraza. In my update, I said that everything went well and that I was feeling fine. On Wednesday, March 13, I started experiencing some problems sitting up straight in my wheelchair. After living with this discomfort for nearly 5 days, I went to the hospital and was diagnosed with prostatitis. This is the reason why I did not post a video last week.
When I went to the hospital on Saturday, March 16, the emergency room physicians ran bloodwork and urinalysis, which came back fine. To find out what was going on with me, they scheduled me for a CT scan. When the doctor came back into my room to read the results of the CT scan, he told me that I had prostatitis, which was an infection in my prostate. He told me that this is the reason why I was having the discomfort that I was having, and it was also the reason why I was unable to sit straight up in my chair. The easiest way to describe this would be that it felt like I was sitting on an orange. The emergency room doctor gave me a prescription for antibiotics and some pain medication. While I'm no longer on the pain medication, I have to continue my antibiotic for a total of 40 days.
Over the past two weeks, I continued with my physical therapy. Week before last, Emily and her student, Carl, transferred me from my wheelchair to the therapy table and we did my balance exercises along with my leg exercises. Everything went well and I'm finding that my range of motion in my legs are getting better. This week, we worked on my core strengthening exercises using the resistance bands, and also some isometric reverse crunches on my back. My neck muscles seem to be improving slowly, and everything went well during my workout.
In this week's video, I go into detail as to the reasons why I didn't post a video last week, and also describe what happened to me when I went to the hospital and was diagnosed with prostatitis. I also announce that I am only going to be doing my videos every two weeks, versus weekly videos. I'm doing this because my work schedule for BioNews Services has increased, and right now, there's not really a lot of new information to report on myself. Besides physical therapy, everything else seems to be copacetic, and after my schedule settles down with BioNews Services, and there is more information to report within the SMA community, I will start doing weekly videos at that point. Click HERE to view my video. Also, click HERE to view my new computer set up that I got for my job with BioNews Services.
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 2 weeks.
Monday, March 11, Through Sunday, March 17 - This was one of those weeks where everything started out great, and then on Thursday, it seems as if my luck ran out. I went back to UT Southwestern Medical Center on Monday, March 11 for my 8th injection of Spinraza. Everything went well regarding my procedure, but on Thursday, my prostate enlarged and it made it very difficult for me to sit up straight in my wheelchair. If I update my website and YouTube channel on Saturday, that meant that I had to go back to the hospital. If I do have to go back to the hospital, they will probably want to admit me for a few days to run some tests and to give me some antibiotics. If I update my website and YouTube channel on Sunday, like I normally do, that means that the symptoms that I'm going through have gotten better.
When I went in for my workout with Emily on Tuesday, we went through my 4 week reevaluation. My reevaluation went very well, and I will post the results of this evaluation next week. I will also discuss these results in next Sunday's YouTube video. After my reevaluation, Emily and I worked on my core strengthening exercises with the resistance bands. After the evaluation, I was tired, but we still went through my normal core strengthening exercises, and I was able to do everything without any issues.
In this week's video, I discuss what happened to me on Monday, March 11, 2019, when I went back to UT Southwestern Medical Center in Dallas Texas for my 8th injection of Spinraza. This was the beginning of my second year of maintenance doses, and I detail exactly what doctors did to me, and I also discuss a change that doctors made to my procedure which made it much easier for me. Click HERE to view my video.
Monday, March 4, Through Sunday, March 10 - This was an extremely busy week, but it was also very productive. Usually, about 3 or 4 days before I go in for my next injection, I try to isolate myself. I tried to minimize my contact with everyone, so I don't take a chance on getting sick. This usually means that I lock myself in my office and try to avoid anyone who has a pulse. While I'm usually in my office for the majority of the day, I find myself becoming a hermit to avoid the possibility of getting sick. Let's face it, the last thing I want to do before getting my next Spinraza injection is to get sick. Our bodies are already compromised after the injection, so I guess this is my way of playing it safe.
When I went in for my workout with Emily on Tuesday, she and her assistant Vicki, transferred me from my wheelchair to the therapy table. We started with my balance exercises first, before they laid me down on my back and started working on my legs. After dating my balance, and while Vicki is standing in front of me and Emily is standing behind me, Emily will begin pushing me forward, backwards and from side to side in an attempt to make me lose my balance. My job is to keep Emily from pushing me too far and making me lose my balance. As I stated in previous journal entries, this exercise looks like a sadistic game that we are playing with each other, but it's actually a lot of fun. One of my YouTube subscribers sent me a message in my Instagram account asking me if these balance exercises were difficult. I told her that I worked on my core strengthening for about six months before beginning these balance exercises. By increasing my core strength, such as my abdominal, back, obliques and neck muscles, I truly believe that these balance exercises are easier for me to do. I will give you one word of advice though, never tell your physical therapist that the exercises are too easy, because they had a unique way of making these exercises much more difficult. Two weeks ago, Emily decided to introduce a therapy ball into my balance exercises. We didn't really do much with it during my first session, but this past week, we utilized the therapy ball much more. When we first started these exercises, Emily would stabilize my arm on the ball to keep it from falling off. My job was to lean to that particular side and then come back up into a neutral sitting position. While I thought that this exercise would be difficult, I was pleasantly surprised at how easy it was. In my YouTube video that I uploaded on Sunday, I state that it looks like Emily is helping me lean to my side and come back into a neutral sitting position, but in reality, the only thing that she was doing was to stabilize my arm on the therapy ball so it would not fall off. When I started this exercise on my right side, I ask Emily to let go of my arm so that I can see if I can keep it on the therapy ball without any help from her. When she let go of my right arm, I felt the therapy ball starting to shift from one side to the other. I now not only had to keep my arm on the therapy ball in the keep the therapy ball from shifting from side to side, I also had to maintain my balance. While it took me a few attempts to get it right, I was eventually able to lean to my right side and keep my arm stabilized on the therapy ball, and I was also able to come back up into a neutral sitting position without too much difficulty. As you can tell by the picture in my journal entry, I think Emily was as surprised as I was. It's nice to get a two thumbs up seal of approval from your physical therapist, and we were both extremely happy with the results. In the coming months, we will add more repetitions to this exercise in hopes that it will not only improve my balance, but it will also improve my core strength.
In this week's video, I discuss my new balance exercises that I’m doing with my physical therapist Emily. We are now using a therapy ball during my balance exercises to improve my core strength and balance while sitting unassisted. During my workout with Emily on Tuesday, March 5th, we took a few pictures of me performing this exercise, and I put these pictures in a short video detailing exactly what we are trying to achieve with this particular exercise. I also discuss my upcoming Spinraza injection which is scheduled for Monday, March 11, 2019. Click HERE to view my video. Click HERE to view some of the pictures we took during my workout.
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In this week’s video, I discuss the REALITY of what Spinraza and Evrysdi ACTUALLY do for those of us with SMA.
I discuss my thoughts regarding these treatments, and I also discussed how hopeful we should all be with regards to Scholar Rock’s new treatment known as apitegromab.
This potential treatment will be the first of its kind because it will be a muscle targeted therapy, that will be used in combination with Spinraza, and other possible treatments.
Be sure to read Emily's latest article: