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My Weekly Journal – 05/13 Through 05/19
Monday, May 13, Through Sunday, May 19 – What an unbelievable week. The only time that I left the house this week was when I went for physical therapy on Tuesday. The majority of the time I was back in my home office working for BioNews Services. We are eagerly anticipating the approval of AveXis’s drug candidate ZOLGENSMA. We know that the announcement will probably come before May 31, but we are hopeful that this announcement will come during the upcoming week. We also received exciting news regarding an article that was published by BioNews Services. In this article, it states that AveXis has submitted additional information from their clinical trials regarding the IT, or intrathecal delivery of their drug candidate ZOLGENSMA. While we understood that the initial acceptance of ZOLGENSMA would only be for infants with Type 1 SMA who were 9 months of age or younger, we are learning now that AveXis is asking the FDA to broaden the label to include children with Type 2 SMA who are 5 years of age or younger. If the FDA approves this request by AveXis, and broadens the label to include this new set of patients, this treatment will be available to a wider patient population. My hopes are that if the FDA broadens the label like AveXis is asking for, those of us who are adults who have SMA Type 3 and 4, will possibly be able to receive this treatment earlier than we thought. While nothing is definite as of yet, the excitement level has been ramped up a few notches.
This past week, when I went for my workout with Emily, she and her assistant, Vicki, transferred me from my wheelchair to the therapy table. This was the first week in nearly 2 months that I was able to do my workout with Emily and Vicki. They used to set me on the edge of the therapy table so that we could work on my balance exercises, but since my balance is improving, Emily is now having me sit on a cushion that makes it much more difficult for me to gain my balance and remain in an upright sitting position.After positioning me on the cushion and after I gained my balance, Emily stood behind me and Vicki stood in front of me. Emily began pushing me forward, backwards and from side to side, and sitting on this cushion made this exercise much more difficult. Emily didn’t have to push me near as hard to make me lose my balance. We worked on this for nearly 15 minutes, and by the time we finished, my abdominal muscles were screaming. Overall, Emily and Vicki said that I did a great job and that it would get easier as time goes on. After finishing my balance exercises, Emily and Vicki laid me down on my back and Emily began working on the range of motion and stretching exercises on my legs, knees, ankles and feet.Along with stretching my legs out straight, Emily is now sitting on the table and placing the heel of my foot on her shoulder. She then places both of her hands on the upper portion of my thigh, just behind the knee cap. She will then pull my leg as straight as possible, which really works the hamstring muscle. After stretching my legs out, Emily places my feet flat on the table and begins pressing down on my knees. This not only brings my foot up toward my body to correct some of the dorsiflexion, but it also stretches the calf muscle and the Achilles tendon. This particular exercise is not overly enjoyable, but it really stretches these muscles and tendons out, and I can tell after I finish my workout, these muscles feel much better. Emily is also bringing my knees up toward my chest, and then pulling my knee in a downward position, which really stretches the muscle along the side of my hip. This is a great exercise, and I can tell you, my hips have never felt better. After doing these particular exercises, I’m pretty much pain-free for the rest of the week.While I only do my videos for my YouTube channel every other week, I’m producing another video this week because of the news regarding ZOLGENSMA. Click HERE to view my video.I’ve updated the flash briefings that I do for BioNews Services. Click HERE to go the flash briefings.I hope that all of you had a fantastic week. Do something for yourself this upcoming week that will make you a better person. God bless you and I’ll see you soon. -
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