Youtube VLOGS - Most Recent Videos

In this week’s video, I’m changing the format as to how my future videos will appear on my YouTube channel. I’m going to try to make my videos a little bit more freestyle and less scripted in hopes to make my videos more enjoyable to watch. While I’ll still do videos containing PowerPoint presentations, some of my videos will just be me speaking to you one-on-one at a more personal level. This gives me the ability to answer some of your questions that you send me in my email and it also allows me to just be myself. In this week’s video I’m answering two questions from users. The first question deals with why I feel we are all lucky to be living in the United States and have the ability to take the Spinraza treatments. In the second question, I answer why I am so adamant and enthusiastic about taking physical therapy. Another issue that I discuss is more on the personal level. Someone very close to me told me that I don’t smile enough in my videos, and I address this with a little humor and the promise that I’ll try to smile more in my future episodes. 

In this week’s video, I’m going to be giving you my tips on hiring a caregiver. Whether you are hiring a caregiver to be with you for a few hours each day, or if you are hiring a live-in caregiver that will be with you 24 hours a day, this is something that most of those who are affected by SMA will have to face at one time or another in our life. This process can be extremely frustrating, and my presentation will give you some tips on what you need to look for when you are searching for that one particular person that will help you in your day-to-day living. While these tips are the ones that I use when searching for my caregiver, please keep in mind that everyone will have different requirements, and this is something that you need to sit down and discuss with your family and friends before starting this process. 

In this week’s video, I’m discussing exon 7, and how this affects those of us with SMA. This is a topic that not many individuals know about, yet, this is one of the key reasons why those of us who have SMA are battling this devastating disease. While there is not a lot of information readily available on the Internet regarding exon 7, researchers and scientists have known about this for quite some time, and this is a subject that I believe all of us need to be more aware of. This is one of those topics that is better explained by someone who has a better working definition as to how exon 7 works, so I also provide a link to a YouTube video that goes into greater detail on not only exon 7, and why this information is so important for us to know about.  This video link is in the description field of my video, and can also be found on my website by clicking on More, then selecting Helpful Links.

In this week’s video, I’m going to discuss the link between spinal muscular atrophy and ketoacidosis. A case report finds spinal muscular atrophy patients can be more prone to a life-threatening metabolic imbalance called ketoacidosis, which causes the blood to become acidic. Ketones normally are produced during periods of sugar shortage (fasting, starvation, intense exercise) as the body starts to break down fat for energy. If ketones are produced and accumulate too quickly in the blood and urine, they become toxic and eventually lethal. When ketones are produced, they are consumed mostly by muscle fibers. In people with reduced muscle mass, such as in SMA, ketone consumption is lower, promoting ketoacidosis. In addition, muscle atrophy reduces the supply of amino acids (building blocks of proteins) as a source of energy and the body shifts toward the breakdown of fats and producing ketones. 

In this week’s video, I’m going to discuss how early Spinraza treatments improved the outcomes of children with SMA. A recent study performed in Germany, reported substantial increases in the amount of SMN2 protein in children who were administered Spinraza treatments early in their life. I go over the results of this study, explain how this study works, and the benefits that were achieved. I’m asking everyone who watches this video to please take time out of your day to contact your local congressman, senators, and the governor of the state in which you live, and urge them to include SMA in all newborn screenings. Currently, there are approximately four to six states that currently test newborns for SMA. We need to express our feelings and let those, who have the power to make these changes, understand that we want SMA to be part of newborn screenings in all fifty states. If we make our voices heard, we can accomplish this very important task. Please do your part by writing a few letters, so that we can be a voice for those who are too young to speak for themselves. If you live outside the United States, you too can make a change in the country that you live in. Given the amount of children that are born with SMA each year, this is a global issue that will require a global response from people like us. 

In this week’s video, I’m going to discuss hydrocephalus and spinal muscular atrophy. Some doctors in the European Union, otherwise known as the EU, are questioning as to whether or not hydrocephalus should be listed as one of the possible side effects of Spinraza (nusinersen). While there have not been any reported cases in the United States of patients contracting hydrocephalus while on active treatment with Spinraza, there had been five reported cases of hydrocephalus in the European Union. Biogen posted a community update, giving their opinions on this particular topic. A link to the article can be found in the Supporting Links section, and can also be found on my website by going to the Helpful Links section. 

To view all of my videos, click on the link below.

Podcasts - Most Recent

In this podcast, I’m going to be reading an article that was written and published on the Muscular Dystrophy Association website on July 5, 2018. I would like to read this article verbatim because the information that I’m about to share with you, is something that I feel everyone needs to know, especially for those you that are trying to have children. The title of this article, SMA Added To National List Of Disorders To Screen For At Birth, was written by Kristin Stephenson. Please remember that everything that I’m about to read you, is coming verbatim from the article itself. 

 In this podcast, I’m going to answer a couple questions that my subscribers have sent me through my YouTube channel or my email account. The first question that I answer involves whether or not I think the frustrations that I went through while getting approval to begin my Spinraza treatments was worth it. The second question that I answer involves whether or not I have noticed any changes to my physical strength and conditioning after beginning my treatment’s. These two questions were asked by multiple subscribers, and I felt doing a podcast would be the best way for me to share my responses to these very important questions with everyone. Please be sure to listen to the end of the podcast, because I explained in great detail as to the reasons why Biogen Pharmaceuticals mean so much to me. Their commitment that they have shown me, is the reasons why I am able to go through this life-changing treatment. 

In this podcast, I'm giving everyone an update with regards to my second maintenance dose of Spinraza. On Monday, July 9, 2018, I went back to UT Southwestern Medical Center to receive my injection. I detail everything that happened to me during the procedure, and I also detail what happened when I hit the proverbial brick wall the evening after my injection. I give my suggestions as to what to do, if you find yourself in the same situation that I was in. While this was one of my most successful maintenance dose injections, I learned a valuable lesson on what to do when you hit a stumbling block regarding one of the side effects of the treatment.

This will be part two of a two-part series where I discuss the events that occurred during the 2018 Cure SMA Annual Conference. Please listen to Podcast #8 before listening to Podcast #9. I hope you will take time out of your day to listen to them because what I’m going to be explaining, I hope will impact you as much as it impacted me. What follows, are my thoughts and feelings that I went through during this two-day event. Sit back and listen to part two of this podcast as I detail day two of this conference.

This will be part one of a two-part series where I discuss the events that occurred during the 2018 Cure SMA Annual Conference. These next two podcasts will be a little longer than most, but I hope you will take time out of your day to listen to them because what I’m going to be explaining, I hope will impact you as much as it impacted me. What follows, or my thoughts and feelings that I went through during this two-day event. Sit back and listen to part one of this podcast as I detail the emotional roller coaster that would define day one of this conference for me. 

Part two of this podcast series will be available in a few days. 

In today’s podcast, I want to share some of the feelings that I’m going through as I prepare for the 2018 Cure SMA Annual Conference. Cure SMA holds these conferences every year, and this will be the first year that I can remember that this conference is going to be held in my hometown of Dallas Texas. While I’m excited about going to this conference, I’m also a little nervous and even scared as to what I’m going to see. Trying to justify my anticipation is going to be difficult, because I have always lived my life to the best of my abilities and accepted those challenges that came with having spinal muscular atrophy. Everyone living on the face of this planet can be defined by how they live their life and the attitude in which they live it. I’ve worked hard in my life to not let spinal muscular atrophy define who I am. For those of you who are able bodied, meaning those of you who can walk, your life is defined by your education, athleticism, brainpower, and other definitive descriptions that others labeled you with. For those of us that are in wheelchairs, we get labeled with the term handicap first, many times before we have a chance to give a better definition of who we really are. In an earlier podcast, I told everyone that when I was young, I was very uncomfortable about being around other handicapped individuals because I didn’t want society placing a label on my life that would define not only who I was at that given point in time, but also would define who I would become in my later years. It wasn’t until college that I completely accepted not only who I was, but it was also at this time that I realize that if anyone was going to put a label on me, it was going to be me that would do this. 

To listen to all of my podcasts, 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.