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In this week's video, I’m going to discuss my 3rd maintenance dose injection of Spinraza, scheduled for Monday, November 12, 2018. I’m going to be giving details as to how I prepare for the procedure, and also discuss the typical routine that I go through with each injection. After this, I’m going to show a brief one minute video that I created from the pictures that we took when I went in for my workout this past week. Laura is working on the muscles in my neck to not only improve the range of motion with regards to rotation in my neck, she’s also working on improving the amount that I can bend my head from side to side. I also review my results from my previous reevaluation that was done on September 30. The numbers that I give in this video regarding the rotation and side bending motions in my neck should improve over the course of time, as we loosen these muscles to allow me better rotation.
In this week's video, I answer two very important questions that my subscribers sent to my email. The first question involved whether or not those of us that are on active treatment with Spinraza will be able to take the Avexis drug, AVXS-101, if and when it gets passed by the FDA to become a treatment similar to Spinraza. The second question asked why AVXS-101 was only going to be available for infants with Type I SMA. They wanted to know if AVXS-101 was going to be available for those of us with SMA Type II and Type III in the future. After answering these questions, I give an update with regards to my physical therapy with Laura, and the new exercise that she’s doing to improve my range of motion in my neck when I look to my left and to my right. I also detail my plans for the upcoming week as I get ready to go back to U.T. Southwestern Medical Center’s William P. Clement University Hospital to receive my third maintenance dose injection of Spinraza, scheduled for Monday, May 12th.
In this week's video, I discuss how my workout went this past week, and I also give my tips and tricks on what to do before you go in for one of your procedures. This week when I went to work out with Laura, we spent the majority of the day doing my reevaluation. Since this took the majority of the time for my work out, we only had time to do a few core exercises. Laura and her staff were all dressed up for Halloween and my workout definitely had a spooky feeling. My tips and tricks that I give before going in for one of your procedures will hopefully make this easier and less stressful for you. While these tips and tricks are my own, I believe everyone could do what I’m doing, which will help you avoid getting sick before going in for one of your injections.
In this week's video, I go over what happened with me during the past week, and I also share exciting news regarding Avexis pharmaceuticals. Avexis just announced this past week that they are seeking FDA approval for their drug AVXS-101. With the success of their clinical trials, they are seeking FDA approval to go from clinical trial status to an actual treatment, similar to what Biogen did with Spinraza. I share part of an email that I received regarding this topic, and I also link the entire article in the description in my video so that my subscribers and followers can go and view the entire article for themselves. I also detail the results of my appointment with my pulmonologist that occurred on Tuesday. I explained the tests that they ran on me along with my new cough assist machine that the pulmonologist is going to prescribe for me.
In this week's video, I'm giving my subscribers an update on what happened with me during this week, and I also talk about my plans for next week. On Tuesday, I'm going to see a pulmonologist. During the 2018 Annual Cure SMA conference, one of the classes that I attended spoke about how those of us with SMA can improve our lung strength. The instructors talked about the advantages of seeing a pulmonologist, so I made an appointment to go see one. This doctor is located at UT Southwestern Medical Center, the same place where I'm receiving my Spinraza injections. This pulmonologist specializes in patients with SMA, so I know that he should be aware of my disease and know some of the challenges that I am facing regarding my breathing. I'm hoping that this doctor will prescribe a cough assist machine for me which will help me expel some of the build up of phlegm and mucus that is gathering in my lungs. My recent hospitalization for pneumonia made me realize just how important getting a cough assist machine will be. When I start feeling congestion, I can use the cough assist machine to help me get rid of all of this buildup, which will hopefully keep me out of the hospital with another case of pneumonia.
In this week's video, I'm taking my subscribers to workout with me. Laura allowed me to take pictures while we worked on all of my stretching exercises. I put all of these pictures together in a video detailing what exercises we are doing and why we are doing these particular exercises. I'm very proud of this video because I feel I have come a long way in my physical therapy. I'm even surprised at some of the results that I've seen after working on the stretching exercises for only a few weeks. My video details which muscles I am working on, and it also gives a step-by-step pictorial example of each exercise.
All of the podcasts and roundtable discussions that I do for BioNews Services can be found by going to their website and by going to the SMA News Today forum. I urge all of my YouTube subscribers and followers and anyone who is following my journey to please subscribe and follow the SMA News Today social media accounts. SMA News Today is a great resource for anyone wanting to learn and to share information regarding Spinal Muscular Atrophy. Please use the following links to get to their social media accounts:
In today’s episode, I’m sharing a roundtable discussion between myself and one of my coworkers with BioNews Services. Kevin Schaefer is the Community Editor for BioNews Services, and he’s also the Forums Moderator for the SMA News Today Forum. Kevin and I are both full-time employees with BioNews Services. This roundtable discussion was produced for our employer, BioNews Services. Kevin and I are doing this roundtable discussion to let our listeners learn a little bit more about the two of us on a more personal level. Kevin and I are planning on doing a monthly roundtable discussion where we discuss a certain topic relating to Spinal Muscular Atrophy. While the roundtable discussion that you’re about to listen to is quite lengthy, future episodes will be shorter in length because instead of talking freely and off-the-cuff, we’ll have a certain topic that the conversation will be focused around. I hope you enjoy this podcast interview that we did and if you have any questions, please leave me a message below the podcast itself.
In today’s podcast, I would like to read an article that was released from Avexis pharmaceuticals on October 18, 2018. Avexis pharmaceuticals is in the process of filing for FDA approval for their drug known as AVXS-101. For quite some time now, Avexis has been going through clinical trials of their drug AVXS-101, and some of the results that Avexis has received from these clinical trials have been dramatic to say the least. This filing for FDA approval is just another example of what I’ve been speaking about for the past year. I’ve been saying that we, as SMA patients have a lot to look forward to and I’ve also stated many times that I felt like there would be multiple treatments that would become available sometime within 2019. I’m going to be reading verbatim from this article, and I will also link this article in the description of my podcast so that you can click on the link and view the article for yourself.
In this podcast, I’m doing my first podcast interview for BioNews Services. I was recently offered a full-time position with BioNews Services as their Forums Director. Every once in a while, I get to do podcast interviews with individuals who are active within the SMA community. Anytime I do a podcast interview for BioNews Services, I will include them in my SoundCloud account for those who are following me in my podcast series. In today’s interview, I am speaking with Shawn Smith. Shawn recently had an SIC port implanted in his body so that he could receive his Spinraza treatments. SIC is an acronym that stands for Subcutaneous Intrathecal Catheter. This port is being tested on SMA patients to see if this would make it easier for us to receive our treatments that we must go through for the rest of our lives. Shawn gives first-hand knowledge of this SIC port, and also gives valuable information for those of us who are considering talking to our doctors about this medical device.
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.