Monthly Journal - October (2018)

Monday, October 22, Through Sunday, October 28 - Finally, after nearly 3 weeks of rain, we actually saw the sun for the first time in quite a while. The only day that it rained this week was on Wednesday, and while the majority of the days were cloudy, there was enough sun to start drying out my yard and flower beds. I felt extraordinarily strong this week and my energy level was through the roof. I don't know if I'm anxious about getting my next injection into weeks, or if this is just pent up energy that's been building in my body since the rain started back toward the beginning of the month.


I usually go for my workouts on Thursday, but last week, Laura asked me if I would come in on Friday because she and her staff were going to be dressed up for Halloween. When I went in for my workout on Friday, Laura was dressed up as Maleficent from the Disney movie Sleeping Beauty. Laura's physical therapy assistant Emily, was dressed up as Scar from The Lion King. As you can see in the picture just to the left of my journal, my workout on Friday was a little freaky. When I got there, Laura had to perform her four-week reevaluation on me. This reevaluation involves taking multiple measurements while I do certain exercises so that she can determine whether my strength level has increased or decreased, and she can also tell if my range of motion has improved. This reevaluation normally takes about 30 or 40 minutes, so by the time we finished, we only had time to do a few of my core exercises. We worked on my abdominals and we also worked on my neck muscles. Beginning next week, Laura will transfer me out of my wheelchair back to the therapy table and we will resume our normal exercises. Along with the stretching exercises that we do for my quadriceps, hamstrings and the muscles in my calves, we will also resume the flexing exercises in my feet and toes. Laura said that she was also going to start working to improve my range of motion when I look to my left and to my right. She wants me to lay flat on my back and she will manipulate my neck to stretch these muscles so that I can improve my range of motion when I looked from side to side. Laura did mention that the swelling in my feet and my ankles had gone down considerably over the last couple of weeks, so we are both hoping that the swelling will continue to go down, which should make next week's exercises much more tolerable for me.


In this week's video, I discuss how my workout went this past week, and I also give my tips and tricks on what to do before you go in for one of your procedures. This week when I went to workout with Laura, we spent the majority of the day doing my reevaluation. Since this took the majority of the time for my workout, we only had time to do a few core exercises. Laura and her staff were all dressed up for Halloween and my work out definitely had a spooky feeling. My tips and tricks that I give before going in for one of your procedures will hopefully make this easier and less stressful for you. While these tips and tricks are my own, I believe everyone could do what I’m doing, which will help you avoid getting sick before going in for one of your injections.  Click HERE to view my video.


Please checkout my Instagram site for new pictures. Click HERE to view my Instagram site.


I hope that all of you have had a fantastic week and I hope that you 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, October 15, Through Sunday, October 21 - What an unbelievable week this was. Four months ago, I was praying for rain. Now, I am praying for it to stop. The North Texas area has received so much rain over the past three weeks, it'll take at least three weeks for the ground to start drying up. My yard service hasn't been able to mow my yard for the last 2 weeks due to the amount of rain, so to say that my grass is eyeball high to a giraffe, would be an understatement. Overall, my week went very well. My muscle strength and my energy level is as high as it's ever been and I feel terrific.


On Thursday, I went to workout with Laura and her two physical therapy students Katherine and Lauren. This was the last week that Katherine and Lauren will be at Green Oaks Physical Therapy. For the past six weeks, they have been working side-by-side with Laura as we do all of my exercises. Watching them learn from Laura has been a great deal of fun, and having them participate and actually working hands-on with me, has been a great pleasure. Seeing their enthusiasm and their willingness to help, proves to me that they will be extremely successful physical therapists. They only have a few more rotations to go before they graduate next December, and I wish both of them nothing but the best. Katherine and Lauren, if you're reading this journal entry, thank you for all your help and good luck in your future endeavors. On Thursday, Laura, Katherine, Lauren and myself met with the ATP with the wheelchair company so that he could perform all of his measurements for my new wheelchair. He had to do this during my workout with Laura, because a physical therapist must oversee and approve everything that he does with regards to the measurements of my new wheelchair. I normally workout from 1 PM to 2 PM, but on Thursday, we spent this hour working with the ATP taking all my measurements. After this, I did my workout from 2 PM to 3 PM. After transferring me to the therapy table, Katherine and Lauren worked on all of my stretching exercises for my quadriceps and my hamstrings, and they also did all of the flexing exercises on my feet and my toes. Even though we didn't get to do an entire hour of physical therapy because of the time it took to take the measurements for my new wheelchair, we did get in a good workout, which included all of my exercises that I do for the muscles in my neck. A few of you have sent me emails asking me why I admire Laura as much as I do. What many people do not understand is that usually, physical therapists work with two or three patients at a time. They get somebody started on an exercise, then they go to another patient and work with them to get them started on another exercise, and then they float back and forth between their patients, overseeing and making sure that they're doing everything correctly. Laura spends the entire hour dedicated only to me. She can't have me start an exercise and walk away. She has to stay with me and work through the exercises with me so that I can complete each and every workout routine and exercise. I know this makes it tough on her to dedicate the entire hour to me, but she never complains and she always finds time in the week so that I can continue my therapy. Since my physical therapy will probably continue for the rest of my life, any physical therapist that works with me is going to have to do the same thing that Laura does. I hope this explains the reason why I admire Laura the way that I do, because without her, and all of her staff, I would not be able to do my physical therapy like I'm doing now.


In this week's video, I go over what happened with me during the past week, and I also share exciting news regarding Avexis pharmaceuticals. Avexis just announced this past week that they are seeking FDA approval for their drug AVXS-101. With the success of their clinical trials, they are seeking FDA approval to go from clinical trial status to an actual treatment, similar to what Biogen did with Spinraza. I share part of an email that I received regarding this topic, and I also link the entire article in the description in my video so that my subscribers and followers can go and view the entire article for themselves. I also detail the results of my appointment with my pulmonologist that occurred on Tuesday. I explained the tests that they ran on me along with my new cough assist machine that the pulmonologist is going to prescribe for me. Click HERE to view my video.


I hope that all of you have had a fantastic week and I hope that you do something for yourself this upcoming week that will make you a better person. I hope that you had a great week and I hope that your upcoming week is better than the previous. God bless you, and I'll see you next Sunday.

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Monday, October 8, Through Sunday, October 14 - This week was one of those weeks where I wanted to trade in my minivan for a boat. Since the beginning of September, the Dallas-Fort Worth Metroplex has seen over 16 inches of rain, and this weekend, we are expected to get another 4 to 6 inches of rain, making September and the beginning of October the wettest two months that we have seen him since the early 60's. Given that we had so much rain this week, I spent the majority of my time working on YouTube videos for my personal channel along with the YouTube channel for BioNews Services, the company that I work for. As much as I love staying in and hibernating in the comfort of my home, I would really love to see the sun come out and dry a lot of this moisture up. I hadn't been able to get my yard mowed in the last two weeks because it's been so wet. Unfortunately, the forecast for the next seven days is calling for more rain and much colder temperatures.


Since I had a conference call for work scheduled for Thursday, I had rescheduled my workout with Laura for Tuesday. Sunday evening while laying in bed, the weather forecast called for heavy rains all day Tuesday, so on Monday morning I called and rescheduled my workout for Wednesday. When I went to work out on Wednesday, Laura and her physical therapy students, Katherine and Lauren, continued the same exercises that you saw in last week's video. I purchased a different slide board and brought it with me to work out. Laura's slide board was made of plastic. Even though I was wearing pants that would make it easy for me to slide in, the plastic caused quite a bit of friction, which made it very difficult for Laura to transfer me. I purchased a slide board that was made out of wood, and when we used it this past week, Laura, Katherine and Lauren found it much easier to transfer me from my wheelchair to the therapy table. Once on the table, I sat unassisted, without any support on my back or my sides, for a total of fifteen minutes. In the video that I did last week, I sat unassisted for just over five minutes, so this week was a definite improvement. After transferring me from my wheelchair to the therapy table, I found it much easier to gain my balance, and while I was sitting unassisted, I worked on leaning to my left and to my right and regaining my balance so that I could sit back up in a neutral position. While I sat there, Laura, Katherine and Lauren began sitting down next to me and then getting up, which through my balance off quite a bit. Every time that they set down, the therapy table would move just a little bit. This small amount of movement in the therapy table made it difficult for me to keep my balance, which is exactly what they were trying to do in the first place. I felt my abs firing constantly which helped keep me balanced. While sitting there, we watched the video that I produced last week and Katherine and Lauren said that they were going to use this video in their class to show the other PT students what they were doing with me in case any of them ever encountered a patient that had the SMA. I told them that they would probably be seeing more patients with SMA, given the fact that there are so many of us that are now on active treatment with Spinraza. I didn't realize that I had been sitting there fifteen minutes until after we finished watching the video, and Laura, Katherine and Lauren were all surprised at the amount of time that I was able to maintain my balance. As we were reaching the fifteen minute mark, I started to get tired and found myself starting to lose my balance. Overall, we were all quite surprised at the amount of time that I was able to stay in this upright position. After we finished watching the video, Laura and Katherine laid me down on my back and began my stretching exercises. Laura told me that my range of motion, just over the past three weeks, has improved quite significantly. While there are those that only find achievements after seeing large amounts of improvement, my achievements are measured in inches. Hearing your therapist tell you that they see significant changes can definitely put a smile on your face. I was quite proud of the fact that my range of motion had improved that much. The only difficulty that we had was when we started working on my feet and toes, flexing them back up toward my body. In last week's video, I told everyone that this was the most difficult part of my therapy so far. I received a few questions from subscribers in my email last week asking me why my feet and my toes were so sensitive. If you watched last week's video, you'll notice that I have significant swelling in my feet and my toes, and I point this out in this week's video. Laura recommended that I purchase some compression stockings. I've been hesitant in doing this because they are so difficult to get on, but Laura told me that she would put them on me when I come to work out on Thursdays, and after wearing them for 4 to 5 days, I could remove them and she would put them back on every time I come to work out. With this being said, I purchased some compression stockings and I will take them with me on Thursday when I go to work out. By getting some of the swelling out of my feet and my ankles, this will not only make this part of my physical therapy easier, it will probably make it much more tolerable as well. Next Thursday will be Katherine's and Lauren's last week to work with me. While I'm definitely going to miss the both of them, I know that they will be successful physical therapists after they finish all of their school and they pass their boards.


In this week's video, I'm giving my subscribers an update on what happened with me during this week, and I also talk about my plans for next week. On Tuesday, I'm going to see a pulmonologist. During the 2018 Annual Cure SMA conference, one of the classes that I attended spoke about how those of us with SMA can improve our lung strength. The instructors talked about the advantages of seeing a pulmonologist, so I made an appointment to go see one. This doctor is located at UT Southwestern Medical Center, the same place where I'm receiving my Spinraza injections. This pulmonologist specializes in patients with SMA, so I know that he should be aware of my disease and know some of the challenges that I am facing regarding my breathing. I'm hoping that this doctor will prescribe a cough assist machine for me which will help me expel some of the build up of phlegm and mucus that is gathering in my lungs. My recent hospitalization for pneumonia made me realize just how important getting a cough assist machine will be. When I start feeling congestion, I can use the cough assist machine to help me get rid of all of this buildup, which will hopefully keep me out of the hospital with another case of pneumonia. Click HERE to view my video.


Since I'm working full time for BioNews Services, every once in a while, I get a chance to do a podcast interview with individuals that are active within the SMA community. I interviewed Shawn Stewart during this podcast interview. Shawn had an SIC port implanted in his body. He uses this Subcutaneous Intrathecal Catheter port so that he can receive all of his Spinraza injections. During my interview,  Shawn describes his SIC port in great detail and gives the listeners the advantages of having this port when it comes to receiving your Spinraza injections. Even though this is still an experimental device, more and more doctors are agreeing to implant these ports in their patients. Currently, when I go in for one of my treatments, they must transfer me from my bed to a fluoroscopy table, and they must use fluoroscopic guidance during my procedure. I also have to receive a small amount of lidocaine to numb my back before the procedure begins. With this SIC port, patients no longer need any fluoroscopic or CT guidance and they no longer need any anesthesia for the procedure itself. By using the SIC port system, the cost of the treatments will significantly go down because there is less medical procedures that are having to be performed on the patient. Click HERE to listen to my podcast interview.


I hope that all of you have had a fantastic week and I hope that you 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, October 1, Through Sunday, October 7 – This was probably one of the best weeks that I’ve had in a long time. It just seems that everything fell into place and nothing went wrong during the entire week. It kinda makes me wonder what next week is going to be like? Oh well, we’ll just wait and see. The weather was beautiful and I got the opportunity to go outside a few times and soak up some vitamin D.


When I went to work out with Laura on Thursday, she had her two physical therapy students with her. Lauren and Katherine worked with Laura during my workout. When I got there, Laura and her students transferred me from my wheelchair to the therapy table. Once on the table and in a comfortable position, I sat completely unassisted for five minutes. I had no side support or back support during this process. Many SMA patients are unable to sit unassisted, and by doing this during my workout, my abdominal muscles are put to the test. These muscles are constantly firing to keep me balanced and I was excited that I was able to do this without too much difficulty. After this, Laura and her students laid me down on my back and they began working on my hamstrings, quadriceps and knees. Stretching my legs and working these muscles actually feels very good. These muscles do not give me too many problems during the day, but as the day comes to a close, my hamstrings do tend to get a little tight, and so the muscles in my calves, so by working these muscles, were hoping to not only stretch them, but hopefully I won’t experience the tightness that normally happens. Also, by stretching my legs, we are also stretching the ligaments and tendons in my knees. Both of my legs have a negative degree of bend, and we are hoping that these exercises will help my legs to straighten out and to be able to lay flatter than they do now. The next exercise that we worked on involved my feet and my toes. I normally have a pretty high tolerance for pain, but you can throw my high tolerance of pain out the window when it comes to working with my feet and toes. These are the most sensitive areas on my body, probably because I don’t use them. Either way, the enjoyment that I had while stretching my legs was rudely interrupted by the pain of my feet and my toes being stretched backwards. Stretching my feet and my toes back toward my body is also painful because I have quite a bit of swelling in my ankles and my feet. The swelling is caused from not wearing feet rest while sitting in my wheelchair. I’m hopefully getting a new wheelchair in a couple of months, so I know that I’m gonna have to wear feet rest to avoid this problem in the future. If you watch my video, you’ll see the grimace on my face as Laura and her PT students work to stretch the muscles in my feet and my toes. After completing all of my stretching and my leg exercises, Laura and her students transferred me back to my wheelchair and we began working on my neck muscles with the resistance band. Since I’m still having a little difficulty with the muscle that controls my head from falling forward, Laura doesn’t use the resistance band on my neck muscle for this exercise. Instead, she places a towel in her hand and then places her hand on the back of my head and pushes my head forward. We do this for as long as I can tolerate it, but we always do at least two minutes worth of this particular exercise. Laura did make a comment that this particular neck muscle seems to be getting stronger because she said that she was having to push my head forward with a little bit more force this week than she had in my past workouts. This made me feel pretty good because I can actually feel this muscle getting a little bit stronger. After this muscle gets a little bit stronger, we will move to the resistance band for this particular portion of my neck exercises just like we do for the other neck exercises.


In this week’s video episode, I’m taking my subscribers to workout with me. Laura allowed me to take pictures while we worked on all of my stretching exercises. I put all of these pictures together in a video detailing what exercises we are doing and why we are doing these particular exercises. I’m very proud of this video because I feel I have come a long way in my physical therapy. I’m even surprised at some of the results that I’ve seen after working on the stretching exercises for only a few weeks. My video details which muscles I am working on, and it also gives a step-by-step pictorial example of each exercise. Click HERE to view my video.


Please checkout my Instagram site for new pictures. Click HERE to view my Instagram site.

I hope that all of you have had a fantastic week and I hope that you do something for yourself this upcoming week that will make you a better person. God bless you, and I’ll see you next Sunday.