In this week’s video, I’m discussing how routine Spinraza is in my life. When all of us started our Spinraza treatments, there were a myriad of questions that needed to be asked and answered. After completing my 10th Spinraza injection, I started thinking how this treatment has become routine, and it’s just another day in my life.
In this week’s video, I’m discussing how difficult it may be for some of us with SMA to find a physical therapist. The majority of physical therapists have probably never worked with a patient with SMA, and the fear of the unknown, can make it difficult to find one that’s willing to work with you. I share my knowledge with regards to finding a physical therapist, and I also discuss my lecture that I did at U.T. Southwestern Medical Center’s School of Physical Therapy. I had the honor and privilege of talking to the doctorate students who are about to graduate either in December of this year, or May 2020.
In this week’s video, I’m discussing some exciting news from Biogen Pharmaceuticals, regarding their Spinraza treatments. Biogen is considering increasing the dosing amounts of their Spinraza treatments. Currently, those of us who receive our Spinraza injections, are receiving 12 mg, and in this new study, called DEVOTE, Biogen is considering increasing the dosing amount of our Spinraza treatments by over 100%, and in some cases, over 400%.
In this week’s video, I’m discussing some very important hip and leg exercises that I’m doing during my physical therapy each week. Since being diagnosed with severe muscle and nerve damage in my right hip and leg, these exercises that I’m talking about, along with the video that I did for my physical therapist, will show how we do these exercises, and the benefits that I’ve seen since starting these particular exercises.
In this week’s video, I’m sharing my message of hope. I’m comparing the past to the present, and the present to the future. In a recent email from one of my subscribers, they asked how I remained optimistic while living with a deadly disease, and my answer, as simplistic as it is, is an answer that I hope all of you take to heart.
In this week’s video, I’m sharing information that was given during the recent Cure SMA webinar, where they gave some great updates regarding Zolgensma. I focus on the 2 clinical trials from AveXis Pharmaceuticals, and I also give my answer as to whether or not I’m going to switch from Spinraza to Zolgensma when it becomes available to those of us that are adults.
This website was created by smajourney51 and its developer, Michael P. Morale. The name smajourney51 and its corresponding logo are not to be used in any other website, YouTube channel or any other social media account without the express written consent of smajourney51. No videos on the smajourney51.com website or the smajourney51 YouTube channel are to be used in any other website, YouTube channel or any other social media account without the express written consent of smajourney51. All links, videos, graphics, personal opinions and advice are meant for informational purposes only. Subscribers and followers to my website, YouTube channel, Facebook page, Twitter account and Instagram account should consult their personal physician for any medical advice. The information that I provide in the above listed social media sites are my own personal opinion, and should not be used by any of my subscribers and followers when making medical decisions.
Copyright © 2019 smajourney51-All Rights Reserved.