Monthly Journal - January (2019)


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.

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, 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.