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.
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.
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.
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.
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.
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.
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
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.
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.
Monday, Mar. 26 thru Sunday, Apr. 01 - This is probably one of the worst weeks that I've had in quite some time. Still suffering from some of the issues with my enlarged prostate, mother nature decided that it was time for me to start suffering from allergies. I just made a comment to a friend of mine nearly a month ago that I never suffered from allergies. I guess I spoke too soon. All week long, my nose ran like a marathon runner, and my eyes were bloodshot for the majority of the week. I knew this had to be allergies because when I woke up on Thursday morning, my solar panels in my backyard were covered in a green film, which turned out to be pollen. I spent the majority of the week with Kleenex shoved up my right nostril to keep my nose from running. While I know that I looked like a strung out crack addict, this was the only thing I could do to keep myself functioning for the week. The only relief that I received was when I went and laid down, but since I couldn't stay in bed all day, I just figured that if people were going to stare at me, I might as well give them a good reason to do so.
I went to workout on Thursday with Laura. When Laura came back to the waiting area to get me, she looked at me and grinned and asked if I was okay. I told her that I wasn't sick, I just had really bad allergies and that the doctor told me that I could still go to work out. After getting a big laugh out of seeing me with tissue shoved up my nose, we began our work out. I didn't realize just how weak I was, because getting through my work out was extremely difficult. Laura could tell that I was getting frustrated, but she told me to relax and that even though I didn't feel good today, next week would be better. I told her that I felt like I was not only wasting my time, but I was wasting her time as well, and I didn't like doing this. She assured me that my difficulty in doing my exercises was because my body was sick, and that next week would be a different story. I went ahead and finish my exercises to the best of my ability and I'm hoping that next week is going to be much better.
In this week’s video, I’m giving another update regarding Cytokinetics and their drug Reldesemtiv. While last week’s video also discussed an update for Cytokinetics, this week’s update involves my discussion with one of their doctors, and I also discuss the fact that this would be the best time for all of my subscribers and followers to call their doctor regarding Reldesemtiv. Cytokinetics finished their phase 2 clinical trial around the middle of March, and I’m asking my subscribers and followers to call their doctors because now would be the time to discuss the options of possibly being able to participate in the upcoming phase 3 pivotal trial if Cytokinetics takes it to this level. We may still be two or three months away from this phase 3 pivotal trial, and if you start speaking to your doctors now, they’ll have time to review this pivotal trial and possibly get you enrolled to participate in it. Click HERE to view my video
I'm hoping that all of you had a wonderful week. We're getting closer and closer to seeing many more treatment options for Spinal Muscular Atrophy. I'm hoping that each of you take my advice and speak to your doctor this week. I want everybody to be proactive instead of reactive, and this means taking time out of your day this upcoming week in speaking to your doctor and getting their opinions on whether or not this new option is going to be right for you. Have a blessed upcoming week.
Monday, Mar. 19 thru Sunday, Mar. 25 - This week, the weather was absolutely beautiful. I can finally see winter exiting stage left, and spring time weather making its grand entrance.
Toward the end of last week, I started noticing that I was having a little difficulty urinating. The pain level went from a two all the way to an eight before I decided to go to the hospital to find out exactly what was going on. All of my bloodwork came back normal, but the doctor who examined me did say that my prostate was somewhat enlarged and is probably causing me to feel the way that I was feeling. They wrote a prescription for a liquid antibiotic and another prescription for Flomax. After being on my prescription for a few days, my symptoms became less severe and by the end of the week, I was feeling back to my old self.
I went to workout on Thursday with Laura. We did all of my usual exercises, but this week, Laura added more repetitions to my side inflection crunches. As I stated last week, these are crunches that I do going from a seated position to my left and to my right, instead of going straight down in front of my body. These side inflection crunches are difficult to do, but these will help build my oblique muscles which will help me maintain balance and control while sitting in my wheelchair.
I worked all week on my video where I give everyone an update with regards to Cytokinetic's phase 2 clinical trial. If you go to the pharmaceutical companies drop-down menu at the top of this page, select Cytokinetics Info to see the update that I gave along with my personal opinion as to what this update means. Click HERE to be taken to that particular webpage. I give good information in this week's video regarding Cytokinetics phase 2 clinical trial. This is the first update that has me believing that we may have an opportunity to participate in multiple treatment options. Click HERE to view my video.
Monday, Mar. 12 thru Sunday, Mar. 18 - I have been anticipating this week for quite a while. Since finishing my loading doses back in November of last year, waiting for months to begin my maintenance doses has been an exciting time because I knew that this would be a new chapter in my life. My only fear was that the weather would not cooperate and would make it difficult for me to get to the hospital, but thankfully, the weather was absolutely beautiful the entire week.
On Monday, March 12, I woke up early in the morning anticipating what would be a great day. I arrived at U.T. Southwestern Bill Clements University Hospital around 11 o'clock in the morning. I knew that I was a little early, but I was hoping that they were ahead of schedule and that they would take me a little earlier than my scheduled time. To my surprise, they did take me a little early. When they took me to my room, they immediately did my bloodwork and urinalysis, then they got me out of my wheelchair and put me in my bed. My procedure was scheduled to begin around 1 o'clock in the afternoon, but due to a delay with another patient that was in the fluoroscopy suite that I was supposed to go in, my procedure didn't began until 2 PM. After positioning me on the fluoroscopy table and making sure that I was in a comfortable position, the doctor came into the room. The doctor that normally performs my procedures was not the doctor that came into the room. My doctor was working at another hospital, so Dr. Scott was the one who was going to perform my procedure. Dr. Scott's student doctor began to numb my back with the lidocaine. While injecting the lidocaine into my back, the needle on the syringe came unscrewed, and lidocaine spewed out and got all of us wet. When this happened, I immediately began laughing and Dr. Scott asked me what was so funny. I asked him if he remembered watching the Carol Burnett show back in the early 70s. He began laughing and asked me if I was talking about the skit with Tim Conway and Harvey Corman. While some of you who are reading my journal may not understand what I'm talking about, you can click HERE to watch the skit that I'm referring to. After injecting the lidocaine into my back, Dr. Scott began the procedure. While inserting the needle into my central nervous system, Dr. Scott accidentally tapped a nerve which sent a burning sensation from my left foot all the way up my left leg and it settled in my left butt cheek. While wincing from the pain, I asked Dr. Scott if he was holding my left butt cheek in his hand. This immediately resulted in laughter from not only the two doctors that were in the room, but also from the nurses and the other medical staff. Dr. Scott informed me that what I was feeling was the reaction from him tapping the nerve with the needle and that the burning sensation that I was feeling would subside. Luckily, this unusual sensation that I was feeling did subside within a few minutes. Both of the doctors did notice that there was a little blood and my cerebral spinal fluid, but Dr. Scott told me that this was because he hit that nerve and that the blood was nothing to worry about. As they withdrew more cerebral spinal fluid, the amount of blood did lessen and eventually, the CSF became clear. After removing the cerebral spinal fluid from my central nervous system, Dr. Scott injected the Spinraza into my spinal cord without any further complications. Once the procedure was over, Dr. Scott put a Band-Aid on my back and helped the medical staff role me back into my bed. I was then taken to my room, and after laying flat on my back for one hour, I was allowed to go home. Late Tuesday afternoon, I started suffering from a severe headache and quite a bit of nausea. The medical staff told me when I began my treatments, that if I started getting headaches after any of my injections, the best thing for me to drink would be black coffee. Since my headache was not going away on its own, I made some coffee and drank one large cup. I also took some activated charcoal tablets to help with the nausea. After about two hours, the coffee and the activated charcoal tablets kicked in and I started feeling much better. I'm not really sure if my headache and nausea was caused by the procedure itself or if this was something that would have happened to me anyway. While this may have been my first small setback with regards to any of the procedures that I've gone through in the past, I count my blessings that I knew what to do to help remedy these two issues.
On Thursday, I went to work out with Laura. Last week, my workout was cut short due to my abdominal muscles cramping up on me. This week, my workout went as planned and Laura even added a new exercise to my workout routine. Instead of doing crunches where I lean forward, she has me going from a seated position and leaning to my left and to my right. We only did fifteen repetitions on each side because this was a new exercise, and she didn't want me to start cramping. Next week, we will increase the number of repetitions and slowly work our way up to around two sets of fifty.
I spent the rest of the week working on my Sunday video. In my video, I discuss some of the issues that occurred while I went through my maintenance dose which I explained in the earlier paragraph of my journal. We, as patients, understand the seriousness of our procedures, but it’s also nice to know that we can interject a little humor at the right times to lessen any complications that we may encounter. Having a positive attitude is something that I’ve talked about in many of my videos, and my last procedure, I decided to practice what I preach. Click HERE to view my video.
Last week, I told everyone the two questions that my best friend used to ask me. The first question was what have you done for yourself this week that made you a better person? The second question was what had you done for somebody else this week that made them a better person? This week, I made myself a better person by going through my first maintenance dose. Regarding the second question, I helped a friend who is going through a very difficult time in his life by just being there and listening. The only thing that he needed was someone to talk to so that he could share his feelings. Having known this person for nearly thirty years, I gave him a chance to not only expresses his emotions, I was also able to give him some advice and just be there for him as a friend when he desperately needed someone to talk to. My hopes and prayers are that you did something for yourself and for someone else this week that not only improved your life, but also improved theirs. Keep a smile on your face and have a wonderful upcoming week.
Monday, Mar. 5 thru Sunday, Mar. 11 - This week has been absolutely beautiful with regards to sunny days and warm temperatures. I'm slowly starting to see the winter weather being tucked away on the bookshelf for another season. While I look forward to springtime weather, the storms and severe weather that accompany the beginning of springtime makes many of us who live in tornado alley somewhat nervous. I guess that's why we have no control over mother nature, because if we did, we would probably find a way to screw it up. My homeowners insurance and my automobile insurance is paid up, so I guess the only thing left to do is to throw my hands up in the air and just accept whatever is dealt to us. I'm scheduled for my first maintenance dose of Spinraza on Monday, March 12. It's hard to believe that it's been four months since my final loading dose. Usually, the hospital will call me on Thursday before my Monday procedure, but this time, they waited until late in the afternoon on Friday before they verified my appointment. This had me a little nervous, but once I received their call, I took a deep breath of relief. When they called, I verified that the same doctor who performed my loading doses would also be performing my first maintenance dose. It's nice to have the same doctor for each injection because you know that they already understand your particular medical situation, and it's a relief knowing that I will not have to explain my limitations to another set of doctors and nurses.
On Thursday, March 8, I went to workout with Laura. When I got there, she had to reevaluate me for my insurance. She normally reevaluates me every four weeks, which is what my insurance requires. Overall, my measurements with regards to how far I can lean forward and how far I can lean from side to side improved. The first set of measurements will measure how far I can lean forward and from side to side without feeling like I'm going to fall out of my wheelchair. The second set of measurements measure how far I can lean forward and from side to side and still be able to get back into a seated position in my wheelchair without assistance. As I stated, both of these measurements improved within the four-week time span. After finishing her reevaluation, Laura and I began doing my exercises. Before we started my crunches, my abdominal muscles tightened up on me, causing some severe cramping in my stomach. Laura just told me to complete these exercises at home. I think I got a bit dehydrated and that's what caused the abdominal muscles to cramp the way they did.
During the week, I worked on my Sunday video. In this video, I discuss three important topics. First, I share my thoughts and feelings as I go in for my first maintenance dose of Spinraza. Second, I do a brief review over the pharmaceutical companies that we’ve been talking about for the past month. Finally, I share a new feature that I added to my website. A few of you have requested that I send you a copy of some of the PowerPoint files that I used over the last month, so instead of sending these files individually as attachments in my email, I created a section on my website where you can download this information for yourself. Please watch until the end, because I also share a very important message with all of you. This message, if taken to heart, can have a profound impact on not only your life, but the lives of your family, friends and those who are most important in your life. Click HERE to view my video.
I hope this week has been a good one for all of you who subscribe to my YouTube channel and follow me on my other social media accounts. This upcoming week is going to be a good one for me because I start a new chapter in my life as I began my maintenance doses. While some people would dread the fact of having to get a lumbar puncture three times a year for the rest of their lives, I look at it as not only a new chapter in my life, I look at it as a life-changing experience that could dramatically shape the way I live my life. I've always been the type of person that looks at the glass as being half full, but now, the glass is slowly filling up. The only thing that stands in my way is my attitude, and I refuse to let that be a factor that will cause me to fail. My prayers are that each one of you have a fantastic upcoming week. As I said in my video description, please watch the entire video because at the end, the advice that I give is something that I have found to be motivational and somewhat spiritually uplifting. God bless each and every one of you.
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In this week’s video, I discuss the REALITY of what Spinraza and Evrysdi ACTUALLY do for those of us with SMA.
I discuss my thoughts regarding these treatments, and I also discussed how hopeful we should all be with regards to Scholar Rock’s new treatment known as apitegromab.
This potential treatment will be the first of its kind because it will be a muscle targeted therapy, that will be used in combination with Spinraza, and other possible treatments.
Be sure to read Emily's latest article: