Monthly Journal - April (2019)

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Monday, April 22, Through Sunday, April 28 - Between physical therapy, multiple non-ending conference calls at work, a doctors appointment and almost breaking my left ankle, this week flew by like a strong gust of wind. On Monday, April 22, I went to the podiatrist to have them trim my toenails. After going through the door at the professional building, where my podiatrist's office is, I stopped on the doormat just inside the building. I turned to look at something, and didn't realize that the doormat got twisted up underneath my wheelchair. As I rolled forward, the carpet pushed my left foot under my wheelchair and I felt and heard a popping noise. What I heard was my Achilles muscle popping. As I went into see my podiatrist, they were going to take an x-ray to make sure that I didn't break my ankle, but the doctor looked at my foot and was able to maneuver my foot around, so he told me that I severely sprung my foot and the muscle in my ankle. This is how my week started, luckily, it got much better after that.


This past week, when I went for my workout with Emily, we focused on my core strengthening exercises. We did all of my usual exercises, including my crunches, reverse crunches, isometric exercise on my back muscle, and strengthening in my neck. The resistance bands that we are using are really helping to strengthen my core muscles, and we will eventually have to move up to a higher resistance band to make my exercises more challenging. One of the funny things that we do when we work on the muscles in my neck, is that Emily will use the gait belt and strap it around my shoulders and the back of my wheelchair. After tightening this gait belt around my upper chest and shoulders, this keeps me stabilized in my chair, so when she's pulling my head forward, my body will not lean forward. When she got ready to put the gait belt around me, she asked me if I was ready to be restrained, and I looked at her and said yes Mistress. The look that I got from Emily was priceless. I know that if another patient was to come in while she was putting this gait belt around me, they would think that we were doing some mid-evil torturous exercise. The other week, when we were working on my balance exercises on the therapy table, one of the other patients told her to quit being so mean to me. I laughed so hard, I was afraid that tears were going to come out of my eyes. Emily's physical therapy student, Derrek, was there, but he was working with another patient, so it was just Emily and myself during my workout. Next week, Emily will transfer me from my wheelchair to the therapy table and we will work on the range of motion exercises and flexing exercises on my hips, legs, knees, ankles, feet and toes. I told her that I almost broke my ankle and told her what happened. Both Laura and Emily had told me the importance of wearing feet rest, especially when it came to the swelling in my ankles. When I told her what happened, I immediately followed up my conclusion with the statement explaining that I know that she's told me numerous times about the advantages of wearing feet rest, but she was dealing with somebody that was more bullheaded than her. She laughed and just shook her head at me. She told me that she hoped that my ankle felt better, especially by next week. I asked her what we would do if my ankle was still sore, and she told me that if my ankle was still sore next week, I probably would not enjoy my workout at all. After flashing me a grin on her face, she told me that if I ankle was still sore, she would work to try to loosen the muscle up as much as possible. Thankfully, as I'm doing my weekly journal and still have three days left before I have to go to work out, my ankle is feeling much better.


In this week’s video, I discussed a topic that’s important for all of us who suffer from SMA to think about. If you’ve been in a wheelchair as long as I have, you probably have some pretty gnarly looking feet. Coupled with the swelling that I have in my ankles, and not being able to properly take care of my feet, I started seeing a podiatrist about 10 years ago. I give you my advice on how to properly take care of your feet, which will give you one less thing to worry about in your day-to-day life. Click HERE to view my video. I also updated my photo gallery on my website, and I also updated the photos that are in my Instagram page. Click HERE to go to the photo gallery on my website, and click HERE to go to my Instagram page.


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 few weeks.  (Don't forget, I'll be posting my journal each week, so be sure to keep checking each week.) 

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Monday, April 15, Through Sunday, April 21 - Like last week, this week was extremely busy and also very productive. I had a wonderful opportunity to speak to one of my subscribers along with his son, who is about to go through his first Spinraza injection. I was able to speak to both he and his father had along with learning his background with regards to his life while living with SMA, I got to share my experiences from the treatments that I have already been through. They wanted to know what to expect and we also discussed at great length the benefits of physical therapy. I could hear the excitement in both the father's and the son' s voice. The son was extremely excited about this new venture that he was about to embark on, and his father told me that he thought that he would never see the day where there would be a treatment for spinal muscular atrophy. I can hear the emotion in the father's voice and I can tell you that it brought tears to my eyes. I wish my parents had been here when I started my treatments, but I know that they are looking down on me and I also know that they are both excited for my future. The father told me that they had been watching my videos since the very beginning, and he was so appreciative of the work that I had put into doing in my videos and the information that I shared. Looking back on it now, it's moments like this, where someone tells me how valuable my videos have been, makes the effort that I put into these videos worth everything. While I know that I will never have thousands and thousands of subscribers. The subscribers that I do have, mean everything to me, and I'm not only appreciative of the fact that my subscribers watch my videos, I'm thankful that the messages that I'm putting out on my videos are helping in some small way.


This week, when I went for my workout with Emily, Carl and Derrek transferred me from my wheelchair to the therapy table, so that we could do all of the range of motion and flexing exercises on my legs, knees, hips, ankles and feet. While some people may feel uncomfortable letting physical therapy students assist during their workouts, I actually enjoy the fact that students get to help me with my workouts. This is the only way that they are going to learn how to work with someone with spinal muscular atrophy. Given the fact that so many of us are now on active treatment, and with the upcoming approval of AveXis's drug, ZOLGENSMA, more and more physical therapists are going to be seeing more SMA patients in their facilities. What better way to learn about how to work with someone with SMA, than hands-on experience. While Emily was there to assist, and to oversee what was happening, Carl and Derrek did the majority of my exercises, and I know that both of them are going to make great physical therapy assistants when they graduate.


My exercises seem to be getting easier as I go through each week. My stamina and my ability to recover quicker with regards to my levels of strength, seem to be improving. While I know the benefits of Spinraza, I'm also very well aware of the fact that my physical therapy has been extremely important to my overall conditioning. While working on my balance exercises this past week, Carl was standing behind me and Derrek was standing in front of me. With Carl pushing me forward, backwards and from side to side, I felt stronger with regards to my balance that I ever have. I jokingly told Carl, while he was working with me on this exercise, was that the best that he could do with regards to pushing me. I heard Emily groan in the background, and it wasn't much longer, when my joke turned into reality. Carl started pushing me with quite a bit more strength and aggression, and the rest of my workout was quite difficult. While we all got a big laugh out of it, I'm the one who ultimately paid the price for my big mouth. I've stated this numerous times, and you would think that I would learn my own lesson, but if your mouth is going to write a check that your butt has to cover, you better be careful about what you ask for. After finishing my balance exercises, Carl and Derrek laid me down on my back and began working on the range of motion and flexibility exercises. While my feet were slightly swollen, they weren't as bad as they had been. One of the more beneficial stretching exercises that we do is when they take my knee and pulled up to my chest and rotate by hip to the opposite side. This really works the hamstring muscle along with the muscle on the side of my hip. While these exercises may not be comfortable to go through, I can really tell a difference once I get back in my wheelchair. My right hip doesn't hurt me at all, and usually the relief that I feel in my right hip lasts for about three or four days. After finishing all of my range of motion and flexibility exercises in my legs, Carl began stretching my neck and working on the rotation and range of motion with regards to me being able to look to my left and to my right. He spent quite a bit of time on the trapezius muscle which is located between your neck and your shoulder, in this stretching exercise is excellent to do to help relax this muscle. After we finished all of the exercises in my neck, Carlton and Derrek set me back up into a seated position on the edge of the therapy table and we worked with the therapy ball while I leaned to my left and my right. We did a couple of sets of reps with the therapy ball, then Carl and Derrek transferred me back to my wheelchair.


On Thursday, April 18, I went back to my pulmonologist for my six-month evaluation. When I went to the pulmonologist in October, 2018, they performed a pulmonary function test (PFT). The numbers that they got during my first evaluation would be the base numbers that they would compare to the results of they got this past week. While most pulmonologists like to see an increase in lung volume and Lyme strength, the majority of them will tell you that any growth, no matter what the number, is good for patients with neuromuscular diseases like SMA. When I went to see Doctor Lee on Thursday, and after they performed the pulmonary function test on me, Doctor Lee read the results. He told me that my lung volume increased from 42% to 48%, my inhale test, (MIP), improved from -47 to -50, and my exhale test (MEP), improved from 25 to 40. Doctor Lee was extremely excited about the increase in my exhale test, and he was so surprised with these numbers, he had me take the test again just to verify that the respiratory nurse was getting correct numbers. The second test came out to be the same as the first. Doctor Lee told me that he was extremely happy with my results, especially given the fact that the normal increase should be in the single digits. He wanted me to start working with my cough assist machine and work on letting it help me inflate my lungs to a higher level. He told me that he wanted me to do this once a day for the next six months, to see if my numbers improve even more when I go through this test again. Doctor Lee told me that he expected my numbers to improve slightly, but not to these levels. He told me that my physical therapy was probably the reason why my numbers improved the way they did. I came out of Doctor Lee's office feeling pretty good about myself, knowing that what I'm doing regarding my treatment and my physical therapy are working.


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.

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Monday, April 8, Through Sunday, April 14 - This is been an extremely busy and productive week. Since doing my last video a few weeks ago, nothing dramatic has changed in my life, and sometimes it feels like I'm stuck in the movie Groundhog Day. One day kinda feels like the next, with a few changes sprinkled in for good measure. My overall energy level has been excellent and there's a lot of excitement in the air with regards to new and upcoming therapies that could be approved by the FDA in the not so distant future. As soon as Spinraza became available as the first treatment, our lives have been extremely busy with everything that's happening since starting our treatments. Now that the majority of us have been on active treatment for the last year or so, I feel that my days are becoming more predictable, which definitely makes it easier for me to plan what I'm going to be doing.


This week, when I went for my workout with Emily, she and her two physical therapy students, Carl and Derrek, performed my four week reevaluation. They took all of the measurements, and we were quite surprised regarding the results, compared to when I started doing some of these exercises back a few months ago. They started out by measuring the negative degree bend in my legs. When we started doing these exercises during the first part of October 2018, my left leg had a -27° curve, and my right leg had a -40° curve. Now, my left leg is it -18° and my right leg is it -21°. This is a substantial amount of improvement, because therapists consider 0° to be perfectly straight. While I may have only improved by 9° in my left leg, I've improved by 19° in my right leg. My dorsiflexion in my feet have improved slightly, but we have a long way to go. My left foot, back in October 2018, was it -34°, and my right foot, back in October 2018, was it -28°. Now, my left foot is -30°, which is a 4° improvement. My right foot, back in October 2018, was at -28°. Now, my right foot is at -37°. My right foot tends to swell and have substantial edema around the ankle, which hinders my foot from being able to flex back upward toward my body, so I'm not seeing as much improvement as I would like in my right foot, but I know that after the swelling goes down, this should improve. The rotation and side bending in my neck have remained around the same numbers since starting these exercises in October 2018. I'm able to look to my left at 26°, and I'm able to look to my right it 22°. These were approximately the same numbers that I had when starting these exercises, so Emily and I are hoping that these numbers will improve as time goes on. While testing my abdominal muscles, Emily did say that I have shown improvement in all three ranges of these measurements. She measures me first when I'm leaning around 45°. Once in position, Emily will pull me up with her hands and my job is to resist her from pulling me back up into a seated position. We also do this when I'm leaning at 30°, and at 20°. I haven't improved as much as what we would like when leaning a 20°, but again, this will take time. Emily stated that I've improved on my side to side exercises as well. I'm able to lean further to my left and to my right and get back into a seated position without assistance, and much of this is due to the strengthening in my core. Overall, my measurements improved with the exception of the dorsiflexion in my feet. After finishing all of these measurements, Carl and Derrek helped me do the rest of my core strengthening exercises with the time that we had left. One of the most important exercises that I do with regards to my core is the isometric exercise on my back. Both Carl and Derrek sat in front of me and put the resistance band around my back. Once in position, they pulled me toward them and my job is to keep my back flat against the back rest of my chair. We do this for a total of two minutes, which really works my abdominal muscles well. This exercise has been beneficial with regards to me being able to lean back in my chair while I go down the ramp in my van. I no longer need anybody to put their hand on my chest to keep me from falling forward. We also use the resistance band on my neck exercises as well. The only difficult part of this exercise for me, is when they are pulling my head forward. They place the resistance band around my head, and while sitting in front of me, they pulled the resistance band toward them which forces my head to go forward. My job is to keep my head in a neutral position without falling forward. We have noticed some strengthening in this exercise, and we will slowly be adding stronger resistance bands as I improve. Next week, I will transfer out of my wheelchair back to the therapy table so that we can work on the range of motion and flexing exercises on my legs, knees, ankles, feet and toes.


In this week's video, I talk about the upcoming approval from the FDA regarding AveXis’s drug ZOLGENSMA. Even though we anticipated the approval around the end of May or 1 June, I discussed my gut feelings regarding when I think ZOLGENSMA will be approved as the second FDA approved treatment for those of us who suffer from spinal muscular atrophy. My opinions are my own, but I’m usually correct when it comes to listening to my gut feelings. Along with sharing my opinions regarding the upcoming approval, I also give you some advice on what to do so that you can make an informed and educated decision as to whether or not you would eventually want to receive this particular treatment.  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 in a few weeks.  (Don't forget, I'll be posting my journal each week, so be sure to keep checking each week.)

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Monday, April 1, Through Sunday, April 7 - While I'm only going to be doing a video every other week, I do want to keep my weekly journal up to date, so I will try my best to update this weekly journal each and every week so that those of you that are following me can keep up-to-date with what's happening. This past week was pretty uneventful, compared to most. My work with BioNews Services is keeping me busy, and we are slowly growing our multimedia products throughout the various forums that we run. We recently launched the Lou Gehrig's Disease (ALS) forum, and since launching this forum on Tuesday, April 2, we have seen tremendous growth with regards to number of page views and the number of new members who signed in and created IDs. With all of this happening, I still met with Emily for my workout, which I'll talk more about in just a moment. I'm still taking my antibiotic for my prostatitis, but quit taking the pain medications a few days after I started the antibiotic. I'm not one of those individuals that likes to stay on pain medications for a long period of time, especially if I don't need them.


Last week, when I went for my workout with Emily, she had two students there were going to be working with her. Emily asked me if I would mind if the students transferred me from my wheelchair to the therapy table, but she also said that she would be there to monitor and make sure that everything went safely. Carl had been working with Emily for the past few weeks, and he also worked with me on my exercises as well. Derrek had been there a couple of weeks, but this was the first week that he would work with me along with Carl. After transferring to the therapy table, we worked on my balance exercises. With Emily standing in front of me, on my right hand side, Carl started working behind me and Derrek was in front of me to make sure that I wouldn't lose my balance. Carl began pushing me forward, backwards and from side to side and we did this for about 10 minutes. After this, Derrek went behind me and Carl came and stood in front of me. It was now Derrek's turn to help me with my balance exercises. By working with therapy students, I'm able to explain the benefits of working with someone with spinal muscular atrophy, and I told the both of them that if they were in the business long enough, they would probably see more patients with SMA, given the fact that so many of us are on active treatments. After working nearly 15 minutes of my balance exercises, they laid me down on my back and began working on the range of motion and flexing exercises that we do on my knees, legs, ankles and feet. Emily had already worked with Carl on this a few weeks ago, so she instructed Derrek on what to do and Carl and Derrek began stretching me out. My right hip had been hurting for a few days before, so they focused quite a bit attention on my right leg, especially when it came to the hamstring and quadricep muscles. They took my right knee and pulled it close to my chest, and then shifted my knee toward the left side of my body, this stretched out that muscle in my hip along with my hamstring and quadriceps. While I wasn't necessarily comfortable during this exercise, afterwards, my hip felt much better. Emily is happy with the range of motion that I have in my hips, because many people with SMA have hip flexing problems that you have due to sitting in a wheelchair for a long enough period of time. After finishing the range of motion and stretching exercises on my right leg, they focused their attention on the range of motion in my ankles and feet. With my feet close to my body, they applied downward pressure on my knees which flexed the muscles in my calves. Once they finished with this, both Carl and Derrek had the opportunity to work on flexing my neck from side to side. This exercise is extremely relaxing to me. Sitting in my wheelchair, I have the weight of my head that makes it difficult to look too far to my left and my right, but by laying on my back, the weight has been dispersed and they are able to get better range of motion and flexibility. I really enjoy doing this because it's not only relaxing, it's also like getting a neck massage during physical therapy. After finishing with my neck, Carl and Derrek set me back up in a sitting position and we took the therapy ball and worked on my balance exercises while I leaned to my left and my right. This is still a new part of my exercise routine, and while it is a bit more challenging, I'm finding it easier each and every week.


The one thing that I will try to do each and every week is to update my website so that I can include the flash briefings that we do during that week. We do three flash briefings per week, one on Monday, Wednesday and Friday. These are the multimedia files that I'm bringing to the other forums that BioNews Services runs. Given the fact that the company has purchased a professional grade microphone and pre-amp for me, the quality of my recordings have really improved. While they say that I have a face for radio, this advanced equipment also makes my voice sounds substantially better.


 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.

TOP OF APR 2019

Monthly Journal - May (2019)

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Monday, May 27. Through Sunday, June 2 - I can sum up my week with 3 words, sleep, eat and work. You could also throw in a little bit of fun and excitement, but for the most part, those were the 3 things that I did for the majority of this past week. Much of my time was spent around the recent approval of ZOLGENSMA by the FDA, and the company that I work for, BioNews Services, has produced some excellent articles regarding not only the FDA approval of ZOLGENSMA, but also how ZOLGENSMA works in our bodies. In my video that I produced for Sunday, June 9, I not only detail the differences between ZOLGENSMA and Spinraza, I provide some important links in the description of my video that I think you will find fascinating, so make sure you watch next week's video.


This past week, when I went for my workout with Emily, she and her assistant Vicki, transferred me from my wheelchair to the therapy table. As I stated in my journal last week, instead of sitting flat on the therapy table while we work on my balance exercises, Emily now has me sitting on a cushion. This cushion, throws my balance off enough to where it makes it very difficult for me to remain in an upright seated position. By sitting on the cushion, Emily doesn't have to push me near as hard to get me to lose my balance. By making this exercise more difficult, it's really working on my core muscles like my abdominals, oblique's, back and neck muscles. I provided a picture of me sitting on this cushion while we worked on my balance exercises. While we worked on my balance exercises, we also took pictures. Emily is producing her 2nd article for the SMA News Today HCP site. This HCP site is a website that BioNews Services has set up for their SMA healthcare professional articles. We took pictures of me doing my balance exercises and I put these pictures into a short 2 minute video that further explains why we are doing these exercises and what muscles we are trying to improve. I will also put a couple of these pictures into the article itself along with the video. This article should be out on the HCP site this upcoming week. After doing my balance exercises, Emily and Vicki laid me down on my back and Emily began working on the range of motion exercises on my legs, knees, ankles and feet. These flexing and range of motion exercises are really helping to not only loosen the hamstring and Achilles tendons, they have also improved some of the damage that's in my right hip. The muscles in my right hip and buttocks have deteriorated to the point to where I'm now sitting on bone, and by sitting on bone, I'm also sitting on some of the nerves. By stretching the muscles that run along my right hip, it's definitely improved the way that I feel throughout the week. Along with stretching my legs out straight, Emily is also bringing my knee up to my chest and rotating my hip to further stretch this muscle that runs along the side of both my hips. After finishing the flexing and range of motion exercises, Emily worked on the trapezius muscles in my neck by pushing my shoulder down and pulling my neck to the side. This is helping to not only loosen these muscles in my neck, it is also providing some relief that I feel as I sit in my chair throughout the day. I've noticed that the muscles in my neck and my shoulders feel better after doing these exercises. After working on the muscles in my neck, Emily and Vicki sat me back up on the therapy table, and I use the therapy ball to leaned to my left and to my right. I have to lean is far to one side as possible, and with my arm on the therapy ball, this works the oblique muscles in my sides. After doing all of my exercises, and after Emily and Vicki transferred me back in my wheelchair, Emily told me that when we do my balance exercises in a few weeks, instead of her pushing me forward, backwards and from side to side, she's going to start using the yellow resistance band so that we can also do some isometric exercises on the muscles in my back and my core. While sitting on the therapy table, Emily will stand in front of me and put the resistance band around my back. She will then pull me toward her, and my job will be to remain in an upright seated position without losing my balance. She will also do this while standing behind me, my putting the resistance band around my chest and pulling me backwards. After this, we will also work on me pulling against the resistance band which will also work these core muscles. The yellow resistance band is the least resistance band that they have, and I will slowly move from the yellow resistance band to the green, blue, red and possibly black resistance band as I improve these muscles. These isometric exercises will take a long time for me to be able to perform, but this is just the next step in my exercise routine.


I do have a little bit of disappointing news. Over the past 4 to 6 months, I've been looking into purchasing a new electric wheelchair. The one that I have now is nearly 20 years old, and while it's still an excellent chair, I wanted to look into a chair that would allow me to recline backwards and possibly get some of the pressure off my hips. The company that I've been working with provided me a demo chair for me to use. They came out the first time and found that they had to make a few modifications to the chairs so that I could get more comfortable, but even after making these adjustments, I was only able to sit in this chair for about 15 minutes before my hips started hurting again. Unfortunately, as much is I want this new type of chair, I have to go with the chair that my hips will allow me to sit in, and while it may not be the chair that I want, it's the only chair that I'm going to be able to sit in without getting uncomfortable. We've decided that we're going to get another chair similar to the one that I'm in now, and while it may not be what I want, it's the only thing that will work. Maybe over the course of time, and after I start building and repairing some of the muscle in my hips, I may, someday, be able to get into a chair that I can recline, and to get into different sitting positions. I am a little disappointed in this fact, but we do what we have to do to maintain our mobility and freedom.


In next week's video, I will be detailing the differences between Biogen's treatment known as Spinraza, versus AveXis's treatment known as ZOLGENSMA. I will talk about what each one of these treatments do in our body and the differences between how these treatments work with regards to those of us with SMA. Now that we have 2 treatments for SMA, there are probably quite a few of you who are wondering what the differences between these 2 treatments are, and my video next week, will hopefully explain these differences and clear up any confusion that you may have.


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

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Monday, May 20, Through Sunday, May 26 - This had to be one of the most fulfilling weeks that I've had in the past 2 years. Not only did everything fall into place, the FDA finally approve ZOLGENSMA from AveXis, as the 2nd FDA approved treatment for those of us with spinal muscular atrophy. This historic announcement will dramatically improve the lives of thousands of children with SMA. We knew that the FDA would approve ZOLGENSMA for infants that were 9 months of age or younger with Type I SMA, but we also knew that AveXis had submitted additional data and information to the FDA in hopes that the FDA would broaden the label to include older children. When the announcement took place on Friday, May 24, 2019, the label said that ZOLGENSMA would be available to infants and toddlers up to the age of 2 years old, irregardless of the subtype of SMA they had. This incredible announcement basically turns a death sentence into a possible normal life for thousands of children around the world with spinal muscular atrophy. We are hopeful that ZOLGENSMA will be available to those of us who are older in the future, and while we believe that this will be the case, they still have quite a bit of testing to go through regarding those of us that are older. ZOLGENSMA will be administered intravenously to infants, and will be administered intrathecally to toddlers. Intravenous delivery of ZOLGENSMA to infants is possible because this treatment can get past the blood brain barrier in these little babies. The intrathecal delivery to toddlers will be administered directly into the central nervous system, similar to how we receive our Spinraza treatments. They chose to do intrathecal delivery for toddlers to ensure that there would not be a blood brain barrier problem. We are also thankful and blessed that this treatment has been passed through the FDA, and with the future of potential treatments being strong, our future is getting brighter each and every day.


This past week, when I went for my workout with Emily, she and I worked on my core strengthening exercises. We not only use the resistance bands, we also did isometric exercises on my core muscles and my neck. The resistance bands and isometric exercises that we are doing has not only increased my core strength, it is also the key reason why I am able to work on my balance exercises every other week. Without a strong core, I would not be able to sit on the therapy table and improve my balance. This goes to prove that months of core strengthening exercises has paid off. If any of you reading my journal entries are thinking about working on your balance, make sure that you focus on your core strengthening first. With a strong core, your balance exercises will be much easier and you will find success much quicker than you would without strengthening your core first. Next week, Emily and Vicki will transfer me from my wheelchair to the therapy table. We will first began with my balance exercises, and I will also be sitting on a cushion, which makes these exercises much more difficult. Sitting flat on the therapy table is not difficult for me to do now, so by sitting on this cushion, it not only throws my balance off, it forces my core muscles to work for longer periods of time. After my balance exercises, Emily will work on my range of motion and flexing exercises on my knees, legs, ankles and feet. We will also be taking pictures while doing these balance exercises next week, because Emily will be producing her 2nd article for the SMA News Today HCP site. After Emily writes her article, she will send it to me and I will post it to the HCP site, along with the pictures, and a short video detailing my balance exercises. I will share the pictures with you next week on my website.


In this week’s video, I discussed the recent approval from the FDA of AveXis’s drug known as ZOLGENSMA. The FDA made the official announcement on Friday, May 24, 2019, making ZOLGENSMA the 2nd FDA approved treatment for those of us who suffer from spinal muscular atrophy. I not only discuss the FDA approval of ZOLGENSMA, I also share a document that was written by SMA News Today regarding this historic announcement. Click HERE to view my video.


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

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Monday, May 13, Through Sunday, May 19 - What an unbelievable week. The only time that I left the house this week was when I went for physical therapy on Tuesday. The majority of the time I was back in my home office working for BioNews Services. We are eagerly anticipating the approval of AveXis's drug candidate ZOLGENSMA. We know that the announcement will probably come before May 31, but we are hopeful that this announcement will come during the upcoming week. We also received exciting news regarding an article that was published by BioNews Services. In this article, it states that AveXis has submitted additional information from their clinical trials regarding the IT, or intrathecal delivery of their drug candidate ZOLGENSMA. While we understood that the initial acceptance of ZOLGENSMA would only be for infants with Type 1 SMA who were 9 months of age or younger, we are learning now that AveXis is asking the FDA to broaden the label to include children with Type 2 SMA who are 5 years of age or younger. If the FDA approves this request by AveXis, and the FDA broadens the label to include this new set of patients, this treatment will be available to a wider patient population. My hopes are that if the FDA broadens the label like AveXis is asking for, those of us who are adults who have SMA Type 3 and 4, will possibly be able to receive this treatment earlier than first thought. While nothing is definite as of yet, the excitement level has been ramped up a few notches.


This past week, when I went for my workout with Emily, she and her assistant, Vicki, transferred me from my wheelchair to the therapy table. This was the first week in nearly 2 months that I was able to do my workout with Emily and Vicki. They used to set me on the edge of the therapy table so that we could work on my balance exercises, but since my balance is improving, Emily is now having me sit on a cushion that makes it much more difficult for me to gain my balance and remain in an upright sitting position. After positioning me on the cushion and after I gain my balance, Emily stood behind me and Vicki stood in front of me. Emily began pushing me forward, backwards and from side to side, and sitting on this cushion made this exercise much more difficult. Emily didn't have to push me near as hard to make me lose my balance. We worked on this for nearly 15 minutes, and by the time we finished, my abdominal muscles were screaming. Overall, Emily and Vicki said that I did a great job and that it would get easier as time goes on. After finishing my balance exercises, Emily and Vicki laid me down on my back and Emily began working on the range of motion and stretching exercises on my legs, knees, ankles and feet. Along with stretching my legs out straight, Emily is now sitting on the table and placing the heel of my foot on her shoulder. She then places both of her hands on the upper portion of my thigh, just behind the knee cap. She will then pull my leg as straight as possible, which really works the hamstring muscle. After stretching my legs out, Emily places my feet flat on the table and begins pressing down on my knees. This not only brings my foot up toward my body to correct some of the dorsiflexion, it also stretches the calf muscle and the Achilles tendon. This particular exercise is not overly enjoyable, but it really stretches these muscles and tendons out, and I can tell after I finish my workout, these muscles feel much better. Emily is also bringing my knees up toward my chest, and then pulling my knee in a downward position which really stretches the muscle along the side of my hip. This is a great exercise, and I can tell you, my hips have never felt better. After doing these particular exercises, I'm pretty much pain-free for the rest of the week.


 While I only do my videos for my YouTube channel every other week, I’m producing another video this week because of some exciting news regarding AveXis’s drug candidate ZOLGENSMA. We have received information that AveXis has provided additional information to the FDA, and have asked the FDA to broaden the label of their potential new drug therapy. The initial request was for SMA Type 1 infants, who were 9 months of age or younger. Now, AveXis is requesting that the label also include children with SMA Type 2, who are 5 years of age or younger. Since this is exciting news for all of us who have spinal muscular atrophy, I thought I should produce another video to keep everyone updated with regards to the latest news. Click HERE to view my video.


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

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Monday, May 6, Through Sunday, May 12 - It seems as if each week tends to go by faster and faster. I was hoping that this week would follow suit. To my surprise, it did. While I usually spend the majority of the days in my home office, on Wednesday, my house was swarmed with carpenters putting down nearly $4000 of new carpet. I had my house built in 2000, so I guess it was time for some new carpeting. A few weeks ago, someone rear-ended my caregiver while she was driving my van. While there wasn't a great deal of damage done to my van, it was still in the shop for 5 days. The insurance company provided me with another accessible van that we can use while mine was being repaired, but since it only took 5 days to get my van repaired and back to me, I never had to use it. My caregiver told me that my 2006 Toyota Sienna minivan drove better than the 2016 Dodge Caravan that they gave him as a loner. Suffice it to say, I was glad to get my van back in the garage where you belongs. One day turned into the next and before long, my week was over. 


This past week, when I went for my workout with Emily, she performed her 4 week reevaluation on me. The only thing that went wrong during this reevaluation was the measurements on my feet and ankles. My left foot, the one that I injured a few weeks ago, actually got better, and my right foot, was a little bit more swollen than what I would've liked, and the test results were not as good. My strength tests were much better with regards to my core muscles, so overall, I was pleased with the results. I'm back on my hydrochlorothiazide, and will stay on this until I get the swelling in my feet and ankles down to a more manageable level. After performing our reevaluation, Emily and I worked on my core strengthening with the resistance bands and isometric exercises. Now that Emily's physical therapy students are gone, I will resume working out with Emily, and her assistant Vicki. While I enjoyed working out with her student therapists, I've missed working out with Emily. You get used to working out with someone, and you don't really realize how much you enjoy their company. It is been a few months since I saw Emily's assistant, Vicki, because I was working out on Wednesdays, and this was usually her day off. Vicki said that she was excited that I was back on my Tuesday schedule, and I'm looking forward to my workout this coming week. When I go for my workout with Emily and Vicki next week, they will transfer me from my wheelchair to the therapy table, and we will do all of my normal balance exercises along with the stretching and range of motion exercises. Instead of sitting on the therapy table, Emily is now placing a therapy cushion under me. This is the type of cushion that they use for patients who have had foot injuries and are rehabilitating their ankles and feet. Two weeks ago, she had me sit me on this cushion, and it made my balance exercises much more difficult. By the time my balance exercises were over, I was sweating like a stuck pig. Maintaining my balance on this therapy cushion was a lot more difficult, and it definitely gave my abdominal muscles a great workout. Emily said that it would get easier over time, and I'm sure it will. My balance has definitely improved, and my core muscles are a key reason to my success. Emily did say that she was going to focus a lot more attention on the Achilles tendon's. She does this by placing my foot flat on the therapy table, and by stabilizing my foot with one hand and pressing down on my knee with another hand, this not only stretches the calf muscle, it also stretches the Achilles tendon. We had been working out my left Achilles tendon quite a bit due to my injury that I sustained a couple weeks ago, and she said that's probably the reason why my reevaluation on my right foot was not as good as my left foot. Emily almost had a sheepish grin on her face when she said that she was going to pay more attention to the Achilles tendon on my right side, so I'm sure that my workout on Tuesday will be one that I'll remember for quite some time. To be honest with you, I'm actually looking forward to it.


In this week’s video, I discussed the latest with regards to AveXis’s drug ZOLGENSMA. While there is not an exact date as to when the FDA is going to make their announcement, I do share a little information that I received about a possible date, along with discussing what’s been happening in my life for the past 2 weeks. Click HERE to view my video.


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

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Monday, April 29, Through Sunday, May 5 - This past week, I spent quite a bit of time working on the Achilles tendon in my left foot. If you read my journal entry last week, I told you that I almost snapped my ankle, when I got it caught in a doormat in my podiatrist's office. I was actually surprised at how quickly my ankle started feeling better, given the fact that I came close enough to doing damage that could've required surgery to correct. Overall, my week went well, and this upcoming week is filled with events that will definitely keep me busy.


This past week, when I went for my workout with Emily, this was the last week that she would have her physical therapy student Derrek to work with me. As soon as I got there, Derrek and Emily transferred me from my wheelchair to the therapy table, and we began doing my balance exercises. Three weeks ago, when I went through my 4 week reevaluation, Emily told me that she was going to change up the way that we did my balance exercises. She told me that my balance was getting better, so instead of sitting flat on the therapy table, she was going to have me sit on a cushion that they use for balance exercises for people that have had a foot injury. While I laughed at her when she brought the cushion over to show me, I thought to myself, how hard could this be? Well, my questions were answered. They put the cushion on the therapy table and transferred me from my wheelchair and got me centered on the cushion. As soon as they were trying to help me gain my balance, I realized just how much more difficult this was going to be. It took me a minute, but I finally got my balance and I can tell you from first-hand experience, this definitely made the exercise much more difficult. With Emily in front of me and Derrek behind me, Derrek began pushing me forward, backwards and from side to side. Sitting on the cushion did make it much more comfortable on my hip, but by making it more comfortable on my hip, this meant that we were going to work longer on the balance exercises. After nearly 15 minutes, and after I was sweating like a stuck pig, we decided it was time to lay me down on my back and began the range of motion and flexing exercises on my legs. My abdominal muscles definitely felt this new exercise, but Emily just smiled at me and told me that it would get easier as time goes on, and that she was already thinking of other exercises to do to make it more challenging for me. While Emily is an excellent physical therapist, she's definitely not going to take it easy on me, which, is probably exactly what I need. My flexing and range of motion exercises went well, and we incorporated a new exercise in my flexing that involved an exercise called a figure 4. If you look at the photograph just to the left of my journal entry, you can see what this exercise looks like. This really works the muscle that runs along the side of your hip, and while it is uncomfortable to do, this particular exercise has really helped to stretch that muscle out, and it make both my hips feel much better. Next week, I will go through my next 4 week reevaluation, and then we will start the process all over again. For the past 2 months, I've been going to my workouts on Wednesday. I did this so that Emily's physical therapy students could work with me. Now that both of them are gone, I will go back to my normal schedule which is on Tuesdays. I'm actually glad to go back on Tuesdays, because Emily's assistant, Vicki, will be working with me again, and she's a lot of fun to work with.


I've updated the flash briefings that I do for BioNews Services, and will begin working on my next video, which should be up on my YouTube channel next Sunday. Click HERE to go 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 Sunday.


TOP OF May 2019

Monthly Journal - June (2019)

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Monday, June 24, Through Sunday, June 30 - This was probably the first week in quite some time that everything fell into place just like I wanted and expected it to. While I only left the house on Tuesday for my workout with Emily, the majority of the time I was in my home office working on projects and flash briefings for BioNews Services. I'm truly blessed to have this job, and I'm extremely thankful for it. I know too many people in this world that don't want to work, and expect everything to be handed to them on a silver platter. I was lucky that I had parents who instilled a good work ethic and me, but I guess that's the difference between being raised in the late 60s and early 70s, versus being raised in the millennial era. I'm not saying that all millennial's are like that, but let's face it, if you don't want to work for a living and expect everything to be handed to you, you probably are a millennial baby.


This past week, when I went for my workout with Emily, she and her assistant Vicki transferred me from my wheelchair to the therapy table and we did all my range of motion and flexing exercises, along with my balance exercises. When they first got me on the table, and after getting properly positioned on the cushion, Emily stood behind me and Vicki stood in front of me. I thought that Emily was going to use resistance bands on my therapy, but she changed my balance exercises up just a little bit to throw me off guard. Along with doing the perturbations, where she pushes me forward, backwards and from side to side, she also shook the table with her leg. Not only was it difficult for me to get my balance when she pushed me, having the table shake underneath me made it extremely difficult to get my balance. I lost my balance more during this past week than I ever had, which actually brought a smile to Emily's face. She said that she could tell that I was working much harder to keep my balance while the table was shaking, and this really did a number on my abdominal muscles. After laying me down on my back and doing my stretching and range of motion exercises, Emily worked on the muscles in my neck. After we finished, Emily and Vicki set me back up on the edge of the therapy table, and we use the yellow resistance band for my side to side exercises.


One of the topics that I'm going to be talking about in the coming weeks will be trying to get the airline companies and the FAA to change their procedures with regards to allowing those of us in wheelchairs to be able to remain in our wheelchairs while we fly. This is a topic that I'm researching quite heavily, and it's a subject that makes me very angry. Why should we, individuals that are combined wheelchairs, have to go through the trouble of transferring from our chairs to an airline seat, along with taking the risk of the airline company damaging our very expensive electric wheelchairs. To me, this is a complete waste of time and totally unnecessary. If this is the subject that angers you, I'm hoping that you watch my video in a few weeks where I discuss this in great detail.


Next Monday, July 8, I will go back to UT Southwestern Medical Center's William P Clement's University Hospital, to receive my 9th Spinraza injection. (5th maintenance dose injection) I'm excited about the upcoming procedure, and look for everything to go as smoothly as the previous procedures. I will quarantine myself the week before to stay away from anybody or anything that could possibly get me sick, so I'm looking forward to spending some quality alone time, with the exception of going to physical therapy. Nothing could stop me from going to my therapy session.


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 soon.

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Monday, June 17, Through Sunday, June 23 - 2 weeks ago, everything moved in slow motion. This past week, everything seemed as if it was in fast-forward. I'm trying to get a couple weeks ahead of all my flash briefings for BioNews Services, because in 2 weeks, I go back to UT Southwestern Medical Center, in Dallas Texas, for my 5th maintenance dose injection of Spinraza. I'm 99% sure that everything will go great, but given that that leaves 1% open for discussion, I tend to play on the safe side.


This past week, when I went for my workout with Emily, she and I worked on my core strengthening exercises. We did the normal exercises with the resistance bands and we also worked on the same isometric exercises. By doing core strengthening exercises one week, and then working on my range of motion and flexibility during the 2nd week, this ensures that I'm getting a good workout at both the core level and in my legs. Next week, Emily and Vicki will transfer me from my wheelchair back to the therapy table, and we will once again start the range of motion and flexibility exercises, along with working on my balance and the muscles in my neck.


In this week's video, I give my subscribers and followers 4 key tips to follow when going in for a Spinraza injection. These 4 tips that I talk about in my video are the tips that I follow when I go in for one of my injections, and since the majority of my injections have gone smoothly, I'm hoping that these 4 tips will help you during your next Spinraza injection. Click HERE to view my video.


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

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Monday, June 10, Through Sunday, June 16  - This past week, everything fell into place like it should have, but the week seemed to have gone in slow motion. Each day was normal with regards to my normal work routine, but the more that I wanted the week to come to an end, it was like everything was moving at a snails pace. It seems funny to me how one week will go so quickly, and the other week will just drag on and never come to an end. Even though the we felt as if it was moving extremely slow, I muddled through and made it without any major problems or difficulties.


This past week, when I went for my workout with Emily, she and Vicki transferred me from my wheelchair to the therapy table. My normal workout routine starts out with my balance exercises, once I get positioned on the therapy table. Now that Emily and Vicki are having me sit on a cushion, it takes just a little bit longer for me to get positioned properly, but it seems to be getting easier each and every time that we do it. Normally, Emily will be behind me and Vicki will be standing in front of me. Emily usually starts out by pushing me forward's, backwards and from side to side, and these type of exercises are called perturbations. This act of throwing my balance off, forces me to utilize my core strength to remain in an upright seated position. Last week, if you read my journal entry, I said that Emily and Vicki were going to start using resistance bands to increase the difficulty level of these particular exercises. Once I gained my balance on the cushion on the therapy table, Emily did start out doing her normal perturbations, but after about 5 minutes, she switched over to the yellow resistance band. With Emily standing behind me, she placed the yellow resistance band around my chest. I thought we were going to do isometric exercises, where she pulls me backwards and I would have to maintain my balance and sit straight up. Instead, Emily had me work my core strength by doing crunches. After leaning forward just a bit, Emily would start pulling back on the resistance band, trying to bring back up into a neutral sitting position. I would then sit back up as straight as possible, and then lean forward utilizing my core strength to pull against the resistance band. At first, this was extremely difficult, but after doing this for a couple of minutes, I found it to be a great workout for my abdominal muscles. We worked on this for about 10 minutes. At one point during these exercises, I leaned a little bit too far forward and lost my balance. Luckily, Vicki was standing in front of me, and she grabbed me before I fell. Even though I know that Vicki is front of me, it was still quite scary to lose my balance, and a huge sense of relief was felt when she grabbed me. After sitting me back up into an upright position, both Vicki and I looked at each other, and I wished I would've had a picture of this moment. We both looked extremely shocked, but relieved that nothing bad happened. Emily grabbed me by my shoulders and was apologetic, because she was unable to grab onto me. This is when the true test of trust comes into play. I trust both Emily and Vicki to not let me fall, and this trust level increases each and every week. After working with the resistance band for about 10 minutes, Emily and Vicki laid me down on my back, and Emily began the range of motion and stretching exercises on my hips, legs, knees, ankles and feet. After this, Emily worked on my neck muscles by rotating my neck to the left and to the right. This particular exercise feels very good, because it stretches the muscles in my neck and my trapezius muscles that run from my neck to my shoulder. To finish my exercises, Emily and Vicki set me back up on the therapy table, and we used the yellow resistance band on my side to side exercises. Emily sat on the therapy table to my right and put the resistance band around my left shoulder. After this, I leaned just a little bit to my left, and Emily began providing resistance with the band, which would pull me back up into an upright position. My job was to lean to my left and push against the resistance band, which worked the oblique muscles. While Emily was sitting on my right side, Vicki was there on my left side, making sure that I would not lose my balance. After doing my right side, Emily transferred to my left side and we worked by having me lean to my right. After this, Emily and Vicki transferred me back to my wheelchair and my workout session was over.


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

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Monday, June 3, Through Sunday, June 9 - With last week being as busy as it was, this week, was the complete opposite. Other than my daily work for BioNews Services, the only time that I left the house was when I went for my workout with Emily. Other than that, I've been secluded in my home office, with the door shut recording flash briefings and podcasts. I can actually say for the first time in a long time, that I miss human interaction. It's funny how fast the week went, because spending days recording articles that are newsworthy along with editing these files and putting everything together, takes quite a bit of time, and this time went much faster than I thought it would.


This past week, when I went for my workout with Emily, we did my 4 week reevaluation. Emily took all of the measurements that we needed for this reevaluation in about 30 minutes, so we had the remainder of the hour to work on core strengthening. Overall, my reevaluation went very well. I posted my reevaluation results for the past 2 months on my website.  The part of the reevaluation that excites me the most is how much I'm able to stretch my legs out. When I first started, my right leg had over a -40° bend. Now, my right leg is it -19°, and my left leg is it -21°. This is quite an improvement since I began. The rotation in my neck seems to be better, and I'm able to look further to my left and to my right. Even though these numbers may not change dramatically from week to week, this is not necessarily meant to be dramatic changes. Most people with SMA get weaker as they get older, and with getting weaker, they lose the ability to rotate their neck and to function as the use to. The purpose of these exercises then we go through are meant to maintain my numbers and to possibly improve. As I said, my numbers may not be getting dramatically better, but they are at least improving and slow increments. Click HERE to view my test results. Next week, when I go for my workout with Emily, she and Vicki will transfer me from my wheelchair to the therapy table and we will do the range of motion and flexing exercises on my hips, legs, knees, ankles and feet. While I enjoyed every aspect of my physical therapy, transferring to the therapy table is the part of my therapy that I really enjoy the most. Next week, instead of me just sitting on the cushion on the therapy table and having Emily push me forward, backwards and from side to side, she's going to begin using the yellow resistance band so that we can do more isometric exercises to improve my balance. While sitting on the cushion on the therapy table, Emily will stand behind me and put the yellow resistance band around my chest. She will then slowly begin pulling me backwards, and my job will be to maintain my balance and stay in a neutral sitting position. Emily will also stand in front of me and put the yellow resistance band around my back, and pull me forward toward her. Again, my job will be to remain in an upright neutral sitting position. While this sounds easy, it doesn't take a lot to throw my balance off while I'm sitting on this cushion, so I know that these exercises are going to provide a great challenge along with a great workout on my core muscles. I actually made the suggestion to Emily a few weeks ago, and she said that this would really be a great challenge for me. As my balance and my core strength improves, we will move from the yellow resistance band, the one that has the least amount resistance, to the other colored resistance bands that provide a greater amount of resistance. While this may take some time, I can truly see benefits with my balance and my core strength, so I'm looking forward to this new exercise.


In this week's video, I go over the key differences between AveXis's treatment known as ZOLGENSMA, and Biogen's treatment known as Spinraza. Surprisingly, there are quite a few differences between these treatments and how they react in our bodies. While ZOLGENSMA was the 2nd FDA approved treatment for SMA, it's actually the first gene therapy that has the FDA stamp of approval. These 2 treatments that I talk about in my video, give those of us with SMA a great deal of hope for our future. In the description of my video, I provide a link to a YouTube video that I found nearly a year ago that goes into great detail regarding how Spinraza repairs the SMN2 gene. This is a fascinating video that I think all of you will enjoy watching. Click HERE to view that video. I also provide 2 other links from articles that BioNews Services wrote regarding the FDA approval of ZOLGENSMA, and another article that discusses what ZOLGENSMA does in our bodies. Click HERE to view the article regarding the FDA announcement, and click HERE to view the video that discusses how ZOLGENSMA works. Click HERE to view my weekly video. The next therapy coming down the pipeline is Risdiplam, and I'm going to go into great detail regarding this potential treatment in the next few weeks. While there may not be a possibility of a combination therapy between ZOLGENSMA and Spinraza, the likelihood of a combination therapy between Spinraza and Risdiplam may be something that we can look forward to. Risdiplam, like Spinraza, works on the SMN2 gene, and there is quite a bit of talk around the grapevine regarding these 2 therapies working together to provide benefits for those of us with SMA.


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

TOP OF Jun 2019