Monthly Journal - May (2018)

Monday, May 28 Through Sunday, June 3 - I'm not really sure if my time management skills have gotten worse, but it seems like there are not enough hours in the day to accomplish everything that I want. I remember back when I worked a full time job and then taught my college courses at night. Even with a busy schedule like that, I seemed to have enough hours in the day to get everything done. Now, I feel like a dog chasing his own tail.

In last week's journal entry, I told you that BioNews Services hired me to produce two videos per month for one of their divisions, SMA News Today. Every two weeks, BioNews Services will send me an article that they want me to review. These articles deal with current SMA related news topics, and anything relating to SMA itself. After thoroughly reviewing these articles, I will produce a short video where I not only review the article with you, I also give you my perspective and opinions. Since I am getting paid for my services, all videos that I do for SMA News Today will be branded under their YouTube channel. This past week, I turned in my first video. Click HERE to view my first video that I did for SMA News Today. While on the SMA News Today YouTube channel, please be sure to subscribe to their channel like you did mine.

Since I spent the majority of this week working on not only my normal Sunday video, and the video for SMA News Today, I also started preparing for everything that I needed to get done before going to the 2018 Cure SMA Annual Conference during the second week of June. Unfortunately, due to my schedule, I was unable to go to work out with Laura this week. Most of you know how much I enjoy working out with Laura, so actually having to cancel out with her because of my busy schedule did not make me feel good at all. Come hell or high water, I will do my best not to ever miss another workout. This coming Thursday, June 7, I will go to work out during my normal time, then at 2 o'clock in the afternoon, Laura and I will meet with the certified representative who will be taking the measurements for my new wheelchair cushion. My insurance requires that a certified rep who is trained in measuring and fitting new equipment meet with me while I'm with my physical therapist. After all the measurements and paperwork have been filled out, my insurance company will also require Laura to sign off on the paperwork stating that she was present and that she observed the entire process. Hopefully, the company that I'm getting this new wheelchair cushion from will be able to provide me a sample of this wheelchair cushion for a few days so that I can try it out before actually placing the order. As I said last week, once you place an order for medical equipment, many of these companies will not allow you to return for a refund, so trying this cushion out for a few days, will help keep me from ordering something that ultimately will not work to help eliminate the pain in my right leg. If, after sitting on this cushion for a few days, I find out that it is the one I want, I will place the order and will probably receive it within two weeks.

In this week’s video, I discuss the results of a phase 1 clinical trial from AveXis, regarding their drug AVXS-101. Results from the first clinical trial of AVXS-101, a gene therapy for infants with spinal muscular atrophy (SMA) type 1, reveal dramatically improved survival as well as motor skills in most of the babies involved in the drug’s first clinical trial. The Phase 1 trial (NCT02122952) treated 15 infants with SMA Type 1, with the gene therapy called AVXS-101, developed by AveXis. This treatment consisted of a harmless virus that carried a functional SMN gene. The virus was injected into the bloodstream, and entered the central nervous system to deliver the gene. All children were 6 months old or younger; 12 of the 15 received a higher dose of AVXS-101, while 3 received a lower dose. I not only discuss the results of this phase 1 clinical trial, I also give my perspective and opinions as to whether or not this potential drug could possibly benefit those of us who are adults who have SMA. While these are just the results from their phase 1 clinical trial, promising results, even in the early stages such as this one, are important for all of us to pay close attention to. Click HERE to view my video. The article I used for my video has been uploaded to my website for you to view. Click HERE to go to my SMA Related Web Articles page to see the article as a web link. Click HERE to go to my Webpage PDF Files page to see this article as a PDF File.

I know that my schedule will be hectic the next couple of weeks, but after I finish with the SMA conference which is scheduled in two weeks, along with getting into the routine of creating videos for SMA News Today, I know that things will settle down. My hopes and prayers are that you had a fantastic week and I hope that your upcoming week will be better than the previous. Don't forget to do something for yourself this week that will make you a better person, and also, do something for someone else to make them a better person.


Monday, May 21 thru Sunday, May 27 - This week was an extremely busy week for me. The weather was absolutely beautiful in Dallas. I found myself wanting to get out and run errands so that I could soak up a little free vitamin D that the sun gives us for free. Overall, my physical strength and stamina are doing great and I've also noticed that my energy level is maintaining itself throughout the entire day. While I know that I'm getting stronger in my core strength, I don't get as fatigued and lethargic as I used to before starting my injections.

When I went to work out this week, Laura was on jury duty, so I worked out with her physical therapy assistant (PTA) Emily. Emily and I did all of my exercises, and my core muscles and my neck and shoulder muscles held up great during the entire workout. My neck and shoulder muscles would weaken and fatigue after about eight or ten repetitions of the exercises that we do to strengthen my neck muscles, but after resting for thirty seconds, those muscles recovered and I was able to continue with not only that particular exercise, I was able to continue the remainder of my exercises and finish out my entire workout. Last week, when these muscles fatigued, it made it very difficult for me to continue. This week, everything went great.

In this week’s video, I’m giving my subscribers and followers four updates regarding things that happened to me this week. In the first update, I’ll discuss my workout and how this workout was different than a workout that I had last week. In the second update, I discuss my new wheelchair cushion. Things are finally moving forward with regards to me getting a new cushion and hopefully, this will provide some relief that I need for my right leg. The third update will consist of information regarding the upcoming 2018 Cure SMA conference that will be held in Dallas in just a few weeks. Registration begins on Wednesday, June 13, and the event is scheduled to run through Sunday, June 17. In the fourth and final update, I explained a new YouTube channel that is expected to be up and functional in the coming weeks. A few weeks ago, I told everyone about SMA News Today, and their website where those of us with SMA can go and discuss different topics, answer questions from others and even ask questions that we need answers to as well. The company that owns SMA News Today hired me to produce two videos per month for their new YouTube channel. The information that I give you in this week’s video will provide further information as to how you can subscribe to their YouTube channel and get some great information regarding various SMA topics. Click HERE to view my video.

I hope everyone had a fantastic week and I hope that your upcoming week is better than the previous. Do something for yourself this week to make yourself a better person, and do something for someone else this week that will not only make them a better person, it will help them feel better about themselves. If you do this, trust me, it will definitely help you make yourself a better person.


Monday, May 14 thru Sunday, May 20 - If there had been a way for me to go back to sleep and have Monday, Tuesday and Wednesday turn out to be a bad dream, I would have gladly taken that option. On Monday and Tuesday, I spent the majority of the day talking to my insurance company regarding the purchase of a new wheelchair cushion. After my CT scan a few weeks ago, the test results revealed that I had severe muscle damage to my right hip. Due to the fact that I have lost a lot of muscle in both my right and left hips, I am now sitting on the bone and nerves in my right hip. This is causing my right leg, calf, ankle and foot to go numb on me. My doctor and my physical therapist, Laura, recommended that I get a new wheelchair cushion that would provide me better support. They recommended a cushion that has medical gel, because if I sit on this gel, it will redistribute the pressure on my right hip, which may relieve some of the pressure that is causing my problems. All day on Monday and Tuesday, I called different companies that handle this type of cushion, and nobody returned my phone calls. You would think that somebody is willing to take my money in exchange for a new wheelchair cushion, but I am finding that this is turning out to be a challenging task.

I usually work out with Laura on Thursdays, but she was going to be away from her practice beginning Thursday through the end of the week. Instead of going to work out on Thursday, I went on Wednesday. I was anticipating having a great workout, like I usually do, but this week's workout presented a few challenges that caused me to get discouraged. We were working on the muscles in my neck and shoulders, and we do four different exercises that focus on these particular muscles. In the exercises, Laura will stand behind me and put the palm of her hand on the left and the right side of my head. If her hand is on the left side of my head, she will push my head to the right. My job is to resist her from making my neck bend to the right. The second exercise is the same as the first, only she pushes my head to the left. This particular exercise helps to build the muscles on the side of my neck. The next exercise we do, Laura will stand on my side and place the palm of her hand on my forehead, and she will try to push my head back. While she's doing this, I have to keep my head straight and not allow her to push my head backward. These three exercises I can usually do without any problems. The exercise that I have difficulty with is when Laura will place the palm of her hand on the back of my head and she will push my head forward. I can usually do six to eight repetitions of this particular exercise before my neck muscles start to fatigue. Usually, after about a minute's worth of rest, my muscle will recover and I can continue my exercises. This week, when we worked on this exercise, my neck muscle did not recover as fast as it usually does, and this caused me to have difficulty with the rest of my exercises. This discouragement got to me and I felt like the rest of my exercises were just a waste of time. Laura told me not to be discouraged and that everything would be okay. She told me that I was just having a bad day and that next week it would be better. No amount of encouragement that Laura was given me seemed to help, because I let this difficulty that I was having take control of the rest of my day.

In this week’s video, I’m giving everyone an update regarding what I did last week. While I try to be as optimistic and upbeat as I can, I’m no different than anyone else. Sometimes, I let a few bad days dictate how the rest of my week will go. The message that I give in this week’s video is one that I gave in previous videos. The reason why I revisit this particular subject is because I myself, had to practice what I preach. It’s difficult for most of us to shrug off negative things that happened during the week. Since I’m no different than anyone else, I need to remember that for me to improve what happens to me during bad times is something that I have to take control of. Letting one negative thing dictate how the rest of your week will go is something we all need to work on. Two years ago, we as SMA patients, had little to look forward to. Now that we have one active treatment for our disease, and with more coming in the not so distant future, the light at the end of the tunnel is getting brighter for each and every one of us. I hope that my message can improve the way that you not only look at problems, but the way that you live your life.  Click HERE to view my video.

I know that this topic has been covered numerous times on my YouTube channel, but this is a topic that I think is important enough to return to every once in a while. My hopes and prayers are that each one of you had a fantastic week and I hope and pray that you will make this upcoming week better than the previous.


Monday, May 7 thru Sunday, May13 - It amazes me how fast a week can go by. Every day was filled with more activities than time to accomplish these tasks. I never understood how a 24-hour day can go by so quickly, not to mention the 168 hours that are in a week. As I mentioned last week, I am actively searching for a new wheelchair cushion that will help me with the pain and numbness that I'm experiencing in my right leg. Like last week, nobody returned my phone call regarding this wheelchair cushion. I'm actually believing that nobody wants my money, as strange as that may sound. I'm willing to spend the nearly $500 out of my own pocket to purchase this cushion, yet nobody seems interested in ordering and providing this cushion for me. I'm sure that I will find somebody in the next couple of weeks there is willing to take my money in exchange for this cushion. It used to be that companies were willing to work with you and help you in any way possible, but now, customer service has been thrown out the window.

Before I knew it, Thursday rolled around and it was time for me to go work out with Laura. When I got there, Laura had to perform her four-week reevaluation on my progress. After her evaluation, she told me that I have improved on every single exercise except for the one were I have to lean to my left side. While I didn't show a decrease in my range, I didn't show an increase either. Given all of the improvement, Laura was happy with my current status. We are now focusing much of our attention on the muscles in my neck. The muscle in my neck that keeps my head from falling forward is the muscle that I want to improve because if I can keep my head back while going down a steep ramp, this will provide me better support and balance. We are also doing new exercises where I lean forward, and instead of Laura pulling me back up to a seated position, she now has me resist from coming back to a seated position which forces the abdominal muscles to stay active for a longer period of time. She'll have me resist and tighten my abdominal muscles for 10 seconds, then she will let me relax for a second or two and then resist her pulling me back up to a seated position for another 10 seconds. We do this for a total of two minutes, and trust me, it's quite a workout. I'm very happy with the amount of progress that I've made over the past few months and I look forward to continued success.

Since I produced a mid week video on Wednesday, my Sunday video is going to be a little different. I’m going to be introducing everyone to a website that was introduced to me a few weeks ago. A gentleman by the name of Kevin Schaefer contacted me after he read an article on the Internet where someone discussed top bloggers who cover topics related to SMA. When Kevin contacted me, he told me about his story and he also introduced me to a website that he not only is actively involved with, he’s also a moderator for this particular website. This website is a great resource for those of us with SMA. This website allows us to not only answer questions from others who have SMA, it also allows us to ask questions that we may need answers to as well. I hope that all of my subscribers and followers to my YouTube channel will join this website and take advantage of all the great information that they have available for us. Trust me, you’ll be glad you did. Click HERE to view my video.

To finish out my week, I spent Saturday with my good friend Kristine and her family. Kristine's sister Kimber came to my house and drove me to Kristine's, but unfortunately, Kimber had to leave early. I spent the entire day with Kristine, her husband, her two sons and daughter and her new daughter-in-law. We didn't really do anything except sit around the house and spent time with each other. It was so relaxing to just be with them and enjoy their company. I'm finding that as I get older, we don't really have to keep ourselves busy to be entertained. Having the time to sit and catch up on past memories and to enjoy each other's stories, made for a relaxing day that I truly enjoyed. I hope everyone had a great week. I hope that you did something for yourself this week that made you a better person. I also hope that you did something for someone else this week that will improve their life. Remember, try to make a stranger smile each day, because if you can do that, you'll find that you yourself will also smile.


Monday, Apr. 30 thru Sunday, May 6 - The weather this week had a difficult time making up its mind what it wanted to do. The beginning of the week was sunny and warm, Thursday and Friday we had severe thunderstorms, and the weekend was absolutely beautiful. While the rainy weather put a damper on some of my plans, I was thankful to get the rain. Any time the good Lord wants to water my yard and save me some money on my water bill, I will gratefully accept it. I began taking full spectrum CBD oil this week hoping that it would help with the numbness and pain that I'm experiencing in my right leg. Many of the people that I spoke with regarding taking this oil told me that it would probably take three or four weeks before I noticed any difference. My legs felt pretty good this week, but there were still a few days where I noticed that nothing seemed to help. I began calling some of my local wheelchair repair and medical supply businesses looking for a new wheelchair cushion. Laura, my physical therapist, recommended that I look into a cushion manufactured by Jay. She recommended the Jay Active cushion, but as I started looking into this particular cushion, I learned that it was 4 inches thick. The cushion that I have been using in my wheelchair is only 2 inches thick, and when I tried 4 inch cushions in the past, I felt like I was sitting too high in my wheelchair. If I sit any higher than I am now, I feel like my balance and equilibrium are thrown off. After calling Sunrise Medical, they recommended the Jay X2 cushion. This particular cushion is only 2 1/4 inches thick, and it doesn't have a rigid bottom, which means that it will conform to my sling seat that I have in my wheelchair. Any cushion with a hard bottom will not work in my wheelchair because of the sling seat. After learning about this cushion, Sunrise Medical gave me the name of a few companies in my area that handled this particular cushion. One of the companies had gone out of business and surprisingly, the other two companies didn't seem very interested in trying to help me. I told them what I wanted and they said they would look into it and call me back. After waiting a few days, I figured neither one of these companies wanted my business. I'm sure I can find another company there will be more than happy to take my money. I'll begin calling other companies this coming week because I would like to get this cushion as soon as possible so that I could try it to see if it will provide me some relief.

As I was waking up on Thursday morning, I had barely opened my eyes when a crack of thunder rocked my house and damn near shook me out of bed. After getting dressed, I made my way to my home office and when I entered the room, I couldn't even see the back of my fence in my backyard because the rain was coming down so hard. I watched my rain gauge go from 1/100 of an inch to nearly an inch in less than 15 minutes. I was getting nervous that I wouldn't be able to go to work out with Laura because of the potential street flooding around my area. The rain began to let up before I was scheduled to leave and I was able to make it work out without any problems. Laura and I seemed to breeze through all of my exercises rather quickly on Thursday and I thought we were going to be done early, but to my surprise, she told me that she had a new exercise for me. Laura said that we were going to start working on the muscles in my neck because these muscles, while being strong enough for me to keep my head up and balanced properly, both she and I felt that by improving and strengthening these muscles, it would help me to be able to lean forward and be able to get back into a seated position. Right now, if I lean too far forward, the muscles in my back tend to give out, and if my head falls forward, it is virtually impossible for me to get back to a seated position. Laura began by standing on my left side and she put her left hand on my shoulder to stabilize me. She then put the palm of her right hand on the back of my head. She told me that she was going to try to push my head forward and my job was to keep my head straight and to not let her push my head forward. She set a timer for one minute and then she would try to push my head forward for 10 seconds, then she would let me relax for three seconds before pushing my head forward again for another 10 seconds. She kept repeating the same exercise for the entire minute. Again, standing on my left side, Laura put her right hand on my shoulder to stabilize me and she put the palm of her left hand on my forehead. She then told me that she was going to try to push my head backward and I was supposed to resist her. She would push for 10 seconds, trying to make my head go backwards, then she would let me rest for three seconds before repeating this motion for one minute. We did the same exercise where she would try to push my head to my left and to my right. After she finished, my neck was tired, but my muscles seem to recover quickly. She told me that over the coming weeks, we would not only increase the amount of time per exercise, we would also increase the number of repetitions. While increasing my core strength is important, having weak muscles in my neck will make it difficult for me to improve too much more than I already have. If I'm able to increase the strength in my neck, we can then begin doing more difficult exercises to improve my core strength.

In this week's video, I go over the agenda for the Cure SMA Conference that will be held in Dallas Texas in June. While Cure SMA has been hosting this conference for many years, this is the first time that I can recall them hosting it in my hometown. Since traveling is very difficult for me to do, I'm thrilled that they chose Dallas for this year's conference. As I go through the agenda, I also highlighted the events that I'm going to participate in. After going through the agenda, I then discuss good news from Cytokinetics Pharmaceuticals. Cytokinetics has decided to announce the results of their phase 2 clinical trial of their drug  Reldesemtiv. I give my opinion as to why I believe they have chosen such a large venue to make this announcement, and I also give my prediction as to what Cytokinetic's next move will be regarding their potential treatment. I truly believe that if you watch my video and listen to my message, you will be as excited as I am. Click HERE to view my video.

Even though I had a frustrating time trying to locate another cushion for my wheelchair this week, overall, I had a damn good week. Every day that I wake up without bugs and dirt on my face, I count my blessings. I hope you did something for yourself this week that made you a better person, and I also hope that you did something for someone else this week that not only made them feel better about themselves, hopefully, this also inspired them to become a better person. Make it a point each day this week to make at least one person that you don't know smile. You'll find that even if you're having a bad day, if you can make a stranger smile, you will find it easier to do so yourself.