Youtube VLOGS - Most Recent Videos

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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. 

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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. 

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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%. 

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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. 

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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. 

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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. 

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

Youtube Playlists

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

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

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

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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.

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