Monthly Journal - January (2018)

Monday, Jan. 29 thru Sunday, Feb. 4 - This has been an extremely busy week. Along with my daily responsibilities around the house, my research into  AveXis' treatment AVXS-101 has taken up quite a bit of my time, but this is time well spent to make sure that we are all up to date on future treatments for Spinal Muscular Atrophy. The only bad thing about keeping myself busy with this research is that I haven't had time to go outside and enjoy the beautiful weather. With my luck, I'll have a week where I'm not so busy but the weather will not be suitable for any outdoor activities.


My physical therapy is going great. I went to workout on Thursday with Laura, and when I got there, she pulled a fast one on me. When she put the green resistance band around my chest to do my crunches, before I started, she told me to wait and she removed the resistance band. She got up and walked over to the area were all of the resistance bands are located and she cut a link of black resistance band. As she was walking toward me, she had a sheepish looking grin on her face, and I knew from the look in her eyes, I was not going to like the outcome. As she approached me, she told me that we were going to use the black resistance band for my crunches. I knew that arguing with her would be futile, so I kept my mouth shut and did what she wanted me to do. When she put the black resistance band around my chest, she had me lean forward and she started to apply tension, pulling me back toward the back rest of my wheelchair. I then began doing my crunches and surprisingly, I was able to do them without too much difficulty. Since my core strength has improved, Laura decided that it was time to increase the number of reps that I'm doing for each exercise. I am now doing 4 sets of 22 on my crunches and my reverse crunches, and I'm doing 4 sets of 20 on my side to side exercises. I am using the black resistance band for my crunches, and the green resistance band for my reverse crunches and my side to side exercises. After we finished working out, I asked Laura how she thought I did on my crunches since we moved to the black resistance band, and she told me that I did surprisingly well. She said that she thought I would have more difficulty doing these since we moved up to the black resistance band, but she said that my overall core strength had improved enough, that she thought that it would be best to use the most resistance as possible to really work the abdominal muscles. By the time we finished, I could definitely tell that we used higher resistance during the exercises, but after about two hours, my abdominal muscles felt great.


In last week's video, I began my research into AveXis and their two ongoing trials for SMA. While I thought the video came out with some good information, I decided to call AveXis because I wanted to speak directly to one of their representatives to try to get more information to share in this week's video. I spoke to one of their reps for about 30 minutes, and while they were unable to give me any statistical data regarding the ongoing trials, they did give me a press release that they had sent out recently that gave some excellent information on three upcoming trials that will begin this year. Two of the trials are expected to begin early to mid 2018, and one of the trials is scheduled to begin at the end of 2018 or the first quarter of 2019. The rep that I spoke with was extremely agreeable in sharing information, and we traded contact information. I will call her once a month or maybe once every couple of months to see if she has anything that she would like to share, and they told me to call any time that I had a question and they would be more than happy to try to help spread the message about their upcoming therapies. In this week's video, I answer some questions that were given to me by some of my subscribers and followers, either through  my email or under video #127 that I did last week, along with a brief recap of the information that I went over in last week's video. I then go into detail about three upcoming trials that are scheduled for this year. While all of the information that I share in this video regarding the upcoming trials is copied verbatim from the AveXis press release, I feel this is exciting information that my subscribers and followers will enjoy hearing about. The next one or two years is going to be an exciting time for all of us, and I hope those who are reading my journal are as excited as I am. Click HERE if you would like to view my video.


I have also made some changes to my website that will help organize all of the information that we will be discussing. I have created a drop-down menu where I'm going to keep all of the information that we speak about regarding pharmaceutical companies and their plans for new SMA treatments. This drop-down option will give me the ability to keep all of this information organized into one central location, which should make it easier for anyone visiting my site to find the information that they need. I'm also planning on doing the same kind of drop-down menu for my journals, again, trying to keep all of the information in one central location. If you have any suggestions for improvements, please feel free to send me an email. To send me an email, just click on the HOME option and scan down toward the bottom. From my home page, you can send me a message without having to go into your own personal email.


I greatly appreciate everybody visiting my website and I hope that each and every one of you have had a fantastic week. I know that I say that we have a lot to look forward to in the future, and I try to say this as much as possible because I truly believe that the future of SMA treatments is going to shock all of us. Take care of yourself, your families and your loved ones. I hope you enjoy this week's video and remember, keep a smile on your face.

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Monday, Jan. 22 thru Sunday, Jan. 28 - This is the first time in quite a while that we had a solid week of beautiful weather. The temperature in the Dallas-Fort Worth Metroplex usually doesn't have large temperature variances, but for some reason, this January has been abnormally colder because of the arctic fronts coming down from Canada. Either way, I have enjoyed this week's weather much more than the previous weeks.


Since I no longer have to worry about getting preauthorized by my insurance company to go to physical therapy, I've been going once a week. My workouts are going well, and Laura seems to be pleased with my progress. We tried a new exercise this week where she wrapped the red resistance band around one of my shoulders and then tried having me rotate that shoulder. Due to my spinal fusion and the rods that are in my back, I was not able to perform this particular exercise. I was a little disappointed in the fact that I was not able to do this exercise, but as in life, you continue to move forward, even with an occasional disappointment. Laura is now using the blue resistance band for all of my core exercises except for the exercises that I do from side to side. My left side seems to be getting a little stronger, so Laura started using the green resistance band for these exercise. The muscles in my sides are a little underdeveloped, and will take longer to strengthen. The only thing that I can think of that could explain why these muscles are underdeveloped, would be that those of us that sit in wheelchairs, usually do not move from side to side as much as we do leaning forward and backwards. The armrests of our wheelchairs generally keep us from moving side to side, so these muscles do not get the work out that our abdominal and oblique muscles get on a day-to-day basis. Either way, I'm still going to work hard to get these muscles built up to where I have the ability to lean from side to side if I'm trying to reach for something, or I'm trying to re-position myself in my chair.


In last week's video, I told everyone that I was going to start investigating other pharmaceutical companies that were planning on bringing their SMA treatments to all of us in the coming future. This week, I spoke about AveXis and their treatment which they call AVXS-101. AveXis is a gene-based pharmaceutical company, and they are focusing quite a bit of time and money in getting their treatment approved and through the FDA process. They had planned on having this treatment available sometime this year, but due to circumstances that they do not discuss, the rollout of this treatment is now scheduled for the first quarter 2019. While I know that the majority of new treatments that are coming down the medical pipeline will be at least a year or longer before they could be available to us, I believe this is the time that we need to take to learn about new treatments that could possibly affect all of us in the not so distant future. Click HERE if you would like to view my video. I spent the majority of the week researching this new treatment and I not only speak about it in my video, I also included a couple of articles in the HELPFUL LINKS page, and in the SMA RELATED WEB ARTICLES page of my website.

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Monday, Jan. 15 thru Sunday, Jan. 21 - It's amazing how fast a week can go. It seems that on Monday, I blinked my eyes and it was already Sunday. This past week, or at least the first part of it, was spent in the house because of the cold weather. On Wednesday, the weather finally started warming up and most, if not all of the ice, was finally melting off the roads which made it safe enough to get out of the house.


My workouts are going great, and my overall stamina is maintaining at a high level. It's been nearly six months since I started my Spinraza treatments, and nearly four months since I started my workouts. Laura is slowly increasing the amount of resistance during my workouts. When I went to workout with her on Thursday, we were using the red resistance band for my side exercises. The red resistance band is one step up from the yellow resistance band that I started with when I started on my core exercises. After doing a few of my side exercises with the red resistance band, Laura told me that we were going to go ahead and go to the green resistance band for the remainder of these exercises. I had already completed my first set of twenty using the red resistance band, so I completed the last forty of my side exercises using the green resistance band. The last forty with the green resistance band were definitely more difficult than using the red resistance band, but I was able to complete the exercises with very little difficulty. Since I had missed a week of working out with Laura, she was pleasantly surprised at how well I did these exercises. While I'm still weaker on my left side than I am on my right, my left side is making progress and I can definitely tell the difference while I'm sitting in my wheelchair during the day. My crunches and my reverse crunches are done using the blue resistance band, which is one step up from the green resistance band. We started using the blue resistance band two weeks ago and while these crunches are much more difficult to do, the more resistance that I can use, it will help these muscles build at a quicker pace. At the end of my workout on Thursday, Laura cut me a blue resistance band that I can use during my workouts at home.


Last week, I told everybody that I was taking my YouTube channel in a different direction, and this week, I worked on the video which further explains my reasoning. SMA has received more attention over the past year than it ever has. During this past year, I focused all of my attention on Biogen and the Spinraza treatments that we are all going through. While I'm still going to be focusing much of my attention on Biogen and their plans for the future regarding our treatments, I feel that it's necessary to start focusing on some of the other pharmaceutical companies that are going to be introducing treatments for SMA in the not so distant future. I will be focusing some of my attention, over the next couple of months, on different pharmaceutical companies, and I will be trying to gather information regarding future treatments from these companies, and what we, as SMA patients can expect to see. While most of these other treatments may be a full year away, now is the time that we need to start gathering the information so that when the time comes, we can start talking to our doctors about whether or not these treatments will have any impact on us.


In my video, I tell everyone that we all have a lot to look forward to in the future, and thanks to Biogen, our futures are much brighter today than they were this time last year. Biogen has given many of us a new lease on life. Click HERE if you would like to view my video.


I hope that everyone is staying healthy and safe during these winter months and I hope and pray that you will continue to support me as I start focusing some of the attention of my YouTube channel in a different direction.

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Monday, Jan. 8 thru Sunday, Jan. 14 - This past week, like last week, was pretty uneventful. The weather in the Dallas-Fort Worth Metroplex has fluctuated from 18°F all the way up to nearly 70°F for the entire week. Being born and raised in the Dallas area, cold temperatures and I do not see eye to eye. As the colder weather sets in, my hands become very stiff and it's very difficult for me to be able to use my hands with any functionality. Usually, when it's this cold, I will stay in the house and hibernate like a bear. By the middle of the week, temperatures began to warm up and I was able to join the human race outside of my house.


My workouts are going well, but due to the fact that my insurance company did not get back with Laura until late in the week, I was unable to go to work out this past week. I did get one bit of good news that shocked me and Laura. Laura sent my prescription in with her reevaluation of me at the end of the previous week, and my insurance responded back on Wednesday of this week telling us that I no longer had to get a prescription and or preapproval from my insurance company anymore for my physical therapy. Laura's receptionist told me that my insurance company told them that as long as Laura deemed my therapy as medically necessary, I would be able to continue without getting any further approval. Laura's receptionist told me that this was the new policy for Medicare Gold through Human. The only time that I would have to get another prescription for physical therapy would be if I decide to take a break from my current therapy and then resume my therapy a month or two later. Since I have no plans of taking a break, this is one less thing that I will have to worry about.


My physical strength is still good, especially given the fact that I feel that I haven't lost any strength that I gained over the past couple months. I spent the majority of Saturday creating and editing my video that will be available on my YouTube channel and my website later today. In my video, I talk about facing reality with optimism. Over the course of my life, I have found quite a few people who are very negative with regards to their situation. I talk about the advantages of being optimistic while facing the reality of what those of us with SMA must live with. To me, this is not a challenging task, but to those with a negative viewpoint about their lives, this is very difficult. In my video I talk about not only facing reality with optimism, I also give an update to my physical strength and workouts and I also discuss dreams versus reality. I hope and pray that those of you that are reading this journal will enjoy the video because it's one that I consider to be very important not only for myself, but for those who have subscribed my YouTube channel and follow me on my other social media accounts. Click HERE to view my video.


In next week's video, I'm going to be dropping a bombshell with regards to where I'm taking my YouTube channel and I will also further explain why I have decided to do what I'm going to do. While my videos will still be an update as to my physical condition and how I'm doing, I'm planning on taking my channel in another direction which will involve Spinal Muscular Atrophy, but the topics that I will be discussing, I think, will be of great importance to those of you who watch my videos.

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Monday, Jan. 1 thru Sunday, Jan. 7 - This past week was pretty uneventful. While Monday, Tuesday and Wednesday were below freezing, the weather for the rest of the week turned out to be really nice. As I've gotten older, I've noticed that the colder temperatures tend the make my hands very stiff, so wintertime is definitely not my favorite time of the year. 


I did my workout at home during the week using the green resistance band to work on my abdominals, obliques and back muscles, and the red resistance band for my side-to-side exercises. When I went to workout with Laura on Thursday, we used the blue resistance band for my reverse crunches and for my back exercises. I could really tell the difference with the blue resistance band because it was much harder to do these two exercises without having to stop and rest.  I'm still using the red resistance band on my side-to-side exercises because these muscles are still a little weaker. I am noticing that after my workouts at home and with Laura, my abdominal muscles are usually a little sore, but this soreness usually goes away within a couple of hours. The only bad thing that happened this week was when I went to work out on Thursday, the physical therapy center had experienced a sewage backup and the entire facility smelt like .... (fill in the blank.. Hint, rhymes with hit). I guess one good thing about this, was it made me want to finish my work out quicker than normal. Laura just smiled and said that it was twice as bad the day before, so I should count my blessings that my appointment wasn't for Wednesday. Laura did agree that I could do my breathing exercise at home, so I wouldn't pass out from the "aroma" in the air.


As I was going through my emails this week, I had quite a few subscribers request more detailed information with regards to the exercises that I'm doing each week. While most of you said you enjoyed the video where I recorded me and Laura doing my exercises, some of you wanted to know a little bit more in-depth information on not only the exercises that I'm doing with the resistance bands, you also wanted to know more about the other exercises that I did not show or discuss in the workout video. With this in mind, I created a PowerPoint presentation that will hopefully answer all of these unanswered questions. I go over each exercise that I'm doing, I tell what muscle groups that each exercise is working, and I also state how many repetitions I'm doing with each exercise. Click HERE to view my video.


I fully understand that I am the last person in the world that should be doing a workout video. I am not a beautiful model, nor am I a musclebound athletically built fitness jock, but let's face it, I never told anyone that I was on the cover of GQ magazine. I am just your average balding, beer bellied, middle-aged geriatric guy who's trying to spread the message about the importance of physical therapy.