Youtube VLOGS - Most Recent Videos

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. 

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. 

While I normally do not do videos during the middle of the week, I decided to go ahead and uploaded this video as soon as possible because it deals with a negative experience that one of my subscribers had during their first maintenance dose of Spinraza. With their permission, I’m going to detail what happened to them so that if you are ever in the same circumstance as they were, you will know exactly what to do. The PowerPoint presentation that I do in this video is only six slides and six minutes in length. My subscriber agrees with me that this video needed to go out before my usual Sunday video, because they wanted to make sure that nobody else went through what they went through. 

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. 

In this week’s video, I reviewed the results of my CT scan that was performed last Wednesday, April 25 at Baylor Scott & White Hospital in Irving Texas. When the doctor called with the results of the CT scan, he told me a little good news followed by a lot of bad news regarding what he saw on the results of the scan. While the bad news is in no way life-threatening, these were not the results that I was hoping for. Over the next couple of weeks, I will have to make some lifestyle changes and look into more seating options so that I can hopefully eliminate some of the pain that I’m going through. Also, in this week’s video, I’m now shooting in 1080p resolution which will hopefully clear up some of the blurriness in my YouTube videos. I give my subscribers and followers a choice of either 720p or 1080p resolution. Make sure you give me your opinion in the description of the video so that I know which one you like best. 

In this week's video, I give my subscribers and followers an update with regards to what's happening in my life, including my upcoming CT scan and my visit to my neurologist that occurred earlier this week. My CT scan is scheduled for next Wednesday, and I will include the results from this test, along with what doctors plan on doing if they find an aneurysm in my leg in next week's video. I received some exciting news from my neurologist regarding my physical strength, and I'm excited about sharing this information with those of you that follow me and subscribe to all of my social media accounts. 


In my third podcast, I gave you a little information about myself and some of the things that I go through on a day-to-day basis. In this podcast, I wanted to go a little deeper and explain how I not only accepted the reality of my life, but how I address some of the fears in my life. We all have certain issues that we have to face, and coping with these fears will allow us to continue moving forward with our lives. While I address a couple of fears that I’ve had to deal with in my life, these are just a few of the things that I’ve had to confront in order to bring peace into the decisions that I have to make each day. It would be very easy for our fears to overwhelm us and take control of how we live our life, but if you can address these fears, you’ll be surprised at the amount of peace and comfort it will bring into your life as well. 

This episode is entitled Making Today Better For Tomorrow. We’re all guilty of having bad days, including yours truly. But, have you ever had one of those days where you just wanted to crawl back into bed, go to sleep and wake up to realize that you were just having a bad dream? The problem with having a bad day, or a string of bad days is that no matter how hard you try not to have them, they are just as predictable as death and taxes. No matter who you are, we are all destined to have a bad day every now and then. The problem with having one bad day is that having this one bad day can infiltrate and manifest itself into a life of its own. This one bad day can easily become two or three bad days, and if this happens, you can easily find yourself ruining the entire seven days of the week. What happens in the past is in the past. You cannot, no matter how hard you try, change what happened yesterday or the day before. You can however change your today to determine your tomorrow. There’s an old adage that states that you catch more flies with honey than you do with vinegar. The same can be said about our attitude. A positive outlook will have a better chance at success than an attitude of defeat or failure. 

Hey everyone, welcome back to the smajourney51 podcast. In today’s episode, I want to take a few minutes to introduce myself and give you a little background information regarding my life. In my introductory podcast that I did the other day, podcast # 1, I told you that my podcasts were going to be a complement to my YouTube channel were I’m chronicling my journey as I go through the first FDA approved treatment for Spinal Muscular Atrophy, or SMA.  

In this podcast, I'm introducing myself to those of you who are listening. I have been an active YouTube developer for the past two years, and over the next month or two, I'm going to begin a series of podcasts that will allow you to follow me as I chronicled my journey while going through the first FDA approved treatment For Spinal Muscular Atrophy. (SMA) 

To view more of my videos, please click the link below.

Youtube Playlists

This is a collection of every video I have produced on my Youtube channel. These videos are in descending order. 

This is a collection of the videos I produced using my GoPro Hero 5 Black camera. These videos are in descending order. 

This is a collection of the videos I produced concerning practical problems.  These videos are in descending order. 

This is a collection of the videos I produced as I went through my four loadind doses of Spinraza.  These videos are in descending order.

This is a collection of the videos I produced as I go through my maintenance doses of Spinraza. These videos are in descending order.