Monthly Journal - February (2018)

Monday, Feb. 26 thru Sunday, Mar. 4 - This past week as been filled with rain and sunshine. While the temperatures were warm throughout the week, the Dallas-Fort Worth Metroplex received over 5 inches of rain on Wednesday. While the rainfall has been nice, ENOUGH IS ENOUGH!!!! We need to dry out for a few weeks before the actual rainy season begins. Our severe weather usually happens from between mid-March all the way through the end of May. With the amount of rain that we have received over the last two weeks, I am somewhat antsy regarding what we could get over the next few months. My strength and stamina has been great this past week, and many of my family and friends have noticed that my voice seems to be stronger. A few weeks ago, I mentioned that I was not getting short of breath like I used to, and I've noticed this more and more over the past couple of weeks. I know that I feel better since I've been working out, so I'm sure it's a combination between the Spinraza injections and my physical therapy. Either way, I know I feel better and it's nice to know that other people are also noticing these changes.


On Thursday, I went to workout with Laura. I missed working out the previous week due to a stomach virus and inclement weather, so it'd been two weeks since I worked out with Laura. In last week's journal entry, I mentioned that Laura was wanting some Oreo cookies, so I went to the store before I went to workout with her and bought her a package of double stuffed Oreos. When I got there, I gave her the Oreos, but the workout was still intense. Even though I knew the workout would be the same, it put a smile on her face, so mission accomplished. She went ahead and phased out one of my exercises, the one where I leaned forward and she pulls me back toward the back rest of my chair using the black resistance band. She said that she felt I was getting stronger in my back, so I could continue this exercise at home, but since she's planning on adding new exercises to my workout, she felt that we needed to focus on the newer exercises. Even though I still work out at home, I feel that working out with Laura at her facility still gives me a more thorough workout. We will probably began some new exercises in the next couple of weeks, and when this happens, I will update everyone.


In this week's video, I introduce everyone to Cytokinetics Pharmaceuticals. I review their ongoing clinical trial for their treatment of Spinal Muscular Atrophy. Cytokinetics has teamed up with Astellas Pharmaceuticals to create another potentially exciting treatment for those of us who are suffering from Spinal Muscular Atrophy. Even though this trial for their treatment of SMA was scheduled to end in February 2018, it may be mid-summer 2018 before any statistical data is released regarding their findings. This drug is orally administered versus an intrathecal injection, and unlike most of the clinical trials currently in progress, this treatment is for adolescents, adults and seniors with Type II, Type III or Type IV SMA. Click HERE to view my video. This will probably be the last pharmaceutical company that I review for quite some time. While there are other pharmaceutical companies that are active in pursuing treatments for Spinal Muscular Atrophy, they have not progressed enough to take the next step to move their drug into a clinical trial status. When these other pharmaceutical companies move their drug into the clinical trial status, I will review them at that time, and pass along whatever information I find to my subscribers and my followers.


Next week, I will be getting ready to go in for my first maintenance dose of Spinraza. I am scheduled to go to the hospital on Monday, March 12. My injection is scheduled for 1 PM, and if everything goes well, I should be out of the hospital no later than 3 o'clock in the afternoon. A few of you sent me emails last week asking if I was going to do a video in the middle of the week giving an update after my maintenance injection. I will probably not do a video in the middle of the week because I want to wait until I get the test results back on my bloodwork and urinalysis, so I will probably just do a video that following Sunday giving everyone an update. I will send a message out to all of my followers on Twitter after my injection giving them an update, so if you haven't already followed me on Twitter, please do so. I hope that everyone has had a fantastic week and I leave you with two questions that my best friend used asked me:


1) What have you done for yourself this week that made you a better person?


2) What have you done for someone else this week that made them a better person?


If you can answer those two questions and feel good about your answers, you had a great week. Think about these two questions this week and try to better yourself each and every week. Keep a smile on your face and be thankful for what you not only have, but be thankful for what's to come.

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Monday, Feb. 19 thru Sunday, Feb. 25 - This has probably been one of the busiest weeks that I've had in quite some time. The weather, this week, has been filled with thunderstorms and torrential rains. In a four day period, we received over six inches of rain. The area of Texas that I live in, the Dallas-Fort Worth Metroplex, received enough rain to pull us out of our drought conditions and it gave us a surplus of nearly three inches of rain for the year. I'm actually somewhat nervous about what's in store for our area during the springtime. From March through May, we should pick up enough rain to fill our lakes and tributaries where hopefully, we will possibly avoid water restrictions for the remainder of the year. Only time will tell, but it's nice to see our lakes filling up. Since the majority of the week was rain filled, I had plenty of time to work on other tasks that needed to be completed. My physical strength and stamina have been great throughout the week, and it's now been a long time since I felt weak and somewhat lethargic. My right arm is strong and my core strength is improving each and every week. My first maintenance dose is scheduled for Monday, March 12, and I called the hospital to verify that everything was still set up and on schedule. I wanted to know the doctor that was going to be doing my procedure, but they told me to call back in a week when their schedule would be updated to reflect who was going to be doing my injection.


I was scheduled to go and work out with Laura on Thursday, March 22, but thanks to all of the inclement weather, I had to cancel. I was disappointed that I didn't get to go workout with her, but since we have no control over mother nature, I decided to play it safe. I also had a small stomach virus that had given me a bit of grief, so it was probably best that I didn't go out. Earlier last week, when Laura and I were working out, she was craving double stuffed Oreos, so Laura, if you're reading my journal, I will bring you some double stuffed Oreos on Thursday. A bit of advice for all of my subscribers to my YouTube channel: keep your physical therapist happy because if your physical therapist is happy, he or she may show mercy upon you during your workouts. You also understand that if Laura is reading my journal, the comments that I made about any mercy being shown, has been thrown completely out the window. Either way, as long as it puts a smile on her face, it's worth it.


I spent quite a bit of time this week working on my video for Sunday. In this video, I’m giving an update with regards to my physical therapy, how I’m feeling and what I’ve been doing for the past month. During the last month, my videos have kept everybody updated with regards to ongoing clinical trials for the treatment of Spinal Muscular Atrophy. The information that I gave in these videos demonstrates the amount of clinical trials that are upcoming regarding the treatments we can all look forward to. While these upcoming treatments may be up to two years away from becoming viable options for us, the future for SMA treatments is looking promising for all of us. In this weeks video, I also updated the pictures of my physical therapy and discuss not only the resistance bands that I’m using for my workouts, I also discuss the number of repetitions that I do for each one of my exercises. The increase in my strength that I am experiencing since beginning my core strengthening exercises is exciting, and I wanted to share this good news with my subscribers and followers. Click HERE to view my video. After I completed all of the editing, I received an email from Cure SMA. This email explained how Medicare and Medicaid were planning on changes as to who qualified to receive the Spinraza treatments. Eleven states, including the state that I live in, Texas, are having stipulations and requirements imposed by the Medicaid and Medicare funding board detailing who can qualify to receive the Spinraza injections. One of the stipulations even allows Medicare and Medicaid to remove someone from receiving their injections even after they have started, if they do not meet the requirements imposed by this new stipulation. Cure SMA is asking all of us to send an email to the representative that is responsible for making this decision. They are asking that we send an email detailing the benefits of Spinraza for those of us that are either on the treatment or for a family member or friend who is on the treatment. Since I had already completed and edited my video for Sunday, I put a preemptive message at the beginning of the video explaining that I was going to do another video for Monday that would address this issue. As a collective voice, we have every right to demand that there be no stipulations or restrictions put on anybody who has SMA and their rights to receive this treatment. When Biogen and Ionis created Spinraza, there were no stipulations as to who could and could not receive this potentially life-changing treatment. Since there were no stipulations and requirements when they developed Spinraza, there should be no conditions or requirements imposed by the Medicare and Medicaid funding board.


Be sure to check my website on Monday, because I will have another video where I explain what we need to do regarding the changes that Medicaid and Medicare are trying to impose upon those of us that are on the Spinraza treatments. Once I complete this video and upload it to my YouTube channel, I will provide a link in not only my journal entries, but they will also be available on the YOUTUBE VLOGS page of my website. I hope everyone has had a fantastic week and I hope that your upcoming week keeps you safe and that you continue to look forward to the future, because our future is getting better and better each and every week.


UPDATE: To view my video regarding the potential changes regarding Meficare and Medicaid coverage, click HERE

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Monday, Feb. 12 thru Sunday, Feb. 18 - Finally, after being forced to stay in the house for what seemed to be an eternity, I was able to get outside this week and enjoy some beautiful weather. A few weeks ago, Punxsutawney Phil was unable to see his shadow, so the great prognosticator said that we were going to get another six weeks of winter. If you go back and look at Phil's record, he's been incorrect 66% of the time. If you ask me, Punxsutawney Phil belongs in a crockpot with carrots, onions and cream of mushroom soup. I'm sure that after eight or ten hours, even Phil would be tender enough to serve to a family of four. Last week, I told everyone that Kimber and Kristine's mother, Carol, had to be admitted to the hospital for an infection in her colon. I'm glad to report that she was released from the hospital and she's back to normal. My physical strength was fantastic this week. My right arm was strong and my core strength seems to be improving each and every day. I have noticed that my voice is stronger and I feel like I am projecting my voice much better than I used to. I've also noticed that when I get some congestion in my lungs, my cough is a lot stronger and I'm able to clear my airway much easier. This coming Monday, I will have three weeks until my first maintenance dose of Spinraza. It's hard to believe that it's been nearly 3 months since I finished my loading doses. Like the old saying goes, time flies when you're having fun.


On Tuesday, I went to workout with Laura. There really hasn't been any change in my workout routine over the past couple of weeks. I'm still using the green resistance band for my side to side exercises. They seem to be getting a little easier each and every week, so I'm pretty sure it won't be long until I move up to the blue resistance band for these exercises. I'm still using the blue resistance band for my reverse back crunches and I'm using the black resistance band for my modified crunches. I took some updated pictures this week when I went to workout with Laura, and I will have these posted to my website and my Instagram account next week. Next week's video will be more of an update on my physical strength and conditioning, and I will be using these pictures for that particular video.


I spent the majority of this week researching Novartis Pharmaceuticals. Novartis currently has an ongoing clinical trial for their potential treatment of SMA. The reason why I chose to research Novartis was because they are addressing how the SMN2 gene is spliced. We all have copies of the SMN2 gene, and even though this gene does produce a protein, the protein that it does produce is weakened. Novartis is attempting to splice this SMN2 gene in a way where it will either produce a complete protein, or it will produce more of a protein than it would otherwise. Due to a mutation in the SMN1 gene, our bodies are having to rely on the protein produced by the SMN2 gene, and if Novartis can successfully splice this gene so that it can produce a full healthy protein, this could revolutionize the way SMA treatments work. Another advantage of this clinical trial by Novartis is that this is an oral medication. This clinical trial has been ongoing for a number of years and is not scheduled to end until late 2019. While this treatment is only for infants ranging in age up to six months, if they are successful, and can show promising results, my gut feeling tells me that this treatment would soon be available to those of us that have SMA Types 2, 3 and 4. Right now, Novartis is stating that the results so far from this particular clinical study seem to be promising. Click HERE to view my video.


When I first started researching these other pharmaceutical companies, I felt like it was going to be an uphill fight trying to get information. To my surprise, I have built a few relationships with these other pharmaceutical companies and they seem to be eager about sharing their results. Unfortunately, they can only share a small amount of information because their clinical trials are still ongoing, but I will keep calling them and I will work hard so that I can share this information with those of you who have chosen to subscribe to my YouTube channel and to follow me on my other social media accounts. My hopes and prayers for this week are that you keep a smile on your face and that you remain as excited as I am about what's in store for each one of us in the upcoming future.

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Monday, Feb. 5 thru Sunday, Feb. 11 - This week was extremely challenging for me because I felt like I was a dog chasing after my own tail. There weren't enough hours in the day to get everything done, and if you're anything like me, once you get behind, you tend to play catch-up for the rest of the week. Adding to my frustration rate was that the weather was absolutely beautiful for the entire week, yet I was unable to get outside to enjoy any of it. Tuesday, while I was working on my video, Kimber called me and told me that her mother had been admitted to the hospital earlier that morning. She was on her way to the hospital to see her mother, so she stopped by my house and picked me up so I could go with her. We spent the majority of the day at Baylor Hospital in downtown Dallas getting her mother stabilized and in her room. Luckily, as the week progressed, Kimber and Christine's mother, Carol, improved each and every day. While I was at the hospital with Kimber and Christine, I did notice one thing that was somewhat surprising. Usually, when I have to roll a long distance in my wheelchair, my right arm tends to get tired. Even though I am in an electric wheelchair, constantly having to push my arm forward to accelerate my chair foward used to make my right arm extremely weak, even after a short distance. When I was in the hospital on Tuesday, I had to roll through three different areas of the hospital to get to the emergency room where Carol was undergoing treatment. When I got to the emergency, it hit me that my arm was not tired and my energy level was extremely strong. After being released from the emergency room, they took Carol all the way across the hospital to where her room was located, and again, my arm held up without becoming fatigued or weak. While this may not seem like a major improvement to those of you reading my journal, this is a major improvement for me because this is the first time in nearly a year that I'm not getting fatigued while going a long-distance in my wheelchair.


When I got home on Tuesday afternoon, I had received a call from my workout center. They called to make sure that I was okay because I missed my workout. After checking my calendar, I realized that I completely forgot about my workout, so I called them back and rescheduled for Thursday. When I went to workout on Thursday, Laura and I got down to business and my workout seemed to be a little more intense than the previous weeks. While doing my reverse back crunches, Laura decided to try the black resistance band. Unfortunately, the black resistance band was a little too much for me to handle on this particular exercise, so we went back to using the blue resistance band. I was somewhat disappointed that I wasn't able to use the black resistance band, but Laura assured me that I was still making great progress in my conditioning and she felt that it probably would just be a few more weeks before I was able to use the black resistance band for all of my workout accept my side to side exercises. My side to side exercises are getting better each week, but it will be quite a while before I'm able to use the black resistance band for these exercises.


I spent the majority of the week researching Roche Pharmaceuticals. During my research, I started building a relationship with one of Roche Pharmaceutical's representatives, and I was able to get some good information on three of their ongoing trials that they currently have in progress. In my video, I go over each one of these individual trials and give detailed information on what we, as patients with SMA, can expect to see from this particular pharmaceutical company in the upcoming future. I also go over the clinical trials website and give a demonstration on how everyone can look up these ongoing trials, along with some of the changes that I've made my website which should make it easier for everybody to get the information that they need. My goal when making changes to my website are that I'm trying to get one central location for all of my information, and I believe that the changes that I made this week, will definitely help my subscribers and followers find the information that they are looking for. Click HERE to view my video.


Over the past couple of weeks, I have shown six different ongoing trials that are currently in progress. Five years ago, there was little hope that we as SMA patients had to hold onto, but now, there are multiple trials for new treatments that will soon become available for each and every one of us. As the light at the end of the tunnel becomes brighter and brighter for all of us, I'm hoping that the level of encouragement and excitement will become a part of our everyday life. We have so much look forward to and our future will show that all of us are going to be the recipients of something great. Keep a smile on your face and have a wonderful upcoming week.