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My Weekly Journal – 12/03 Through 12/09
Monday, December 3, Through Sunday, December 9 – This was a long, stressful, somewhat arduous week. I had to change my workout with Laura from Tuesday to Thursday because I had to go to my pulmonologist on Tuesday to visit with his pulmonary nurse. This small change in my schedule seem to throw everything off and this week just didn’t feel right. I’m not saying that anything went wrong, it just seems funny to me how such an insignificant change can alter how you feel throughout the week. It could be that I’m overthinking this, but then again, it may not be. (Dammit, I think I’m overthinking it.)When I went to see my pulmonologist’s respiratory nurse on Tuesday, I took my new cough assist machine with me so that she could set everything up and show me exactly how she wanted me to use it. When the representative from the healthcare store came out to my house to deliver it to me, he set it up with the specifics that they received from the doctor, but Katherine, the respiratory nurse, had me go through a few treatments with the machine and she reset some of the numbers to make these treatments more effective and beneficial. The inhale portion of the exercise forces air into my lungs and my job is to relax and take as deep of a breath as possible. This goes on for a total of 5 seconds, and then I get to rest for the next 5 seconds until the next cycle begins. The first time that I tried this when they brought the machine to my house, this was somewhat painful to do because I didn’t know how to do it properly. Katherine taught me the proper way to do this exercise and after doing a few cycles with her watching, I can tell you that the inhale therapy that this cough assist is giving me is going to really help expand my long strength and capacity. After doing a few of these therapy cycles in front of Katherine, I could tell that I could take a deeper breath, and it really felt good. I will continue to use this on a daily basis as instructed by Katherine until I go back in for my next appointment in April. Katherine also set up the cough assist portion and took me through a few cycles. She told me that they did not want me to use the cough assist on a daily basis. She told me to only use the cough assist whenever I felt I was getting congested or if I felt that I was having trouble coughing up some of the phlegm and mucus that was collected in my lungs. So far, I have not had to use the cough assist, but when I start feeling congested, I will definitely use it. She told me that if I do have to use the cough assist, to be sure to end my therapy with a couple of sessions of just the inhale portion so that I can make sure that my lungs are expanded as far as possible.Since I had to go to my pulmonologist’s office on Tuesday, I had to change my workout with Laura to Thursday. If you remember in last week’s journal entry, I told you that Laura wanted me to start coming on Tuesdays instead of Thursdays because her Physical Therapy Assistant, Emily, would be available on Tuesday to work with her during my exercises. Since I wasn’t going to transfer to the therapy table this week, changing my schedule to Thursday wasn’t really a big deal. When I got there, Laura and I began working on my core muscles using the resistance bands. I worked on my crunches, reverse crunches and side bending exercises using the resistance band. We then worked on my isometric exercise where Laura puts the resistance band around my back and tries to pull me forward. My job is to keep my back against the back rest of my wheelchair. This isometric exercise really works my back and abdominal muscles, and we do this for a total of 2 minutes. Trust me, after 2 minutes, my abdominal muscles were screaming. After this, we use the resistance bands to work the muscles in my neck. Laura is no longer using the palm of her hand to push my head forward. She is now using the yellow resistance band for this portion of my neck exercises. The yellow resistance band is the one with the least amount of resistance and I am struggling with this exercise. I find it much more difficult to use the resistance band during this portion of my neck exercise, but, with time, and as this muscle increases in strength, these exercises will become easier. My workouts with Laura usually last about an hour, and by the time we completed all my exercises, my one hour workout seemed to have only lasted minutes. It surprises me how fast my time goes while I’m doing my workout with Laura. I guess I’m so busy that the old adage that says “time flies when you’re having fun” can be considered a true statement.In this week’s video, I go over the exciting news that was released on Monday, December 3, 2018 on the Cure SMA website. The FDA has accepted Avexis Pharmaceutical’s Biologics Licensing Application, (BLA), regarding their drug AVXS-101. This is the first step in the possible approval to bring AVXS-101 to treatment status for those of us who suffer from SMA. Not only did the FDA approve Avexis Pharmaceutical’s BLA, they also gave Avexis Pharmaceuticals Priority Review designation. The FDA granted Biogen Pharmaceuticals Fast-Track status for their drug Spinraza. Priority Review designation is essentially the same as Fast-Track status. Now, instead of this treatment being available to us between July and August 2019, we can see this treatment becoming available as early as late April to May 2019. Given the positive results that Avexis reported during their clinical trials, I see no reason for the FDA to deny Avexis Pharmaceuticals in their attempts to bring this drug to treatment status. AVXS-101 is now known as ZOLGENSMA. In the description of my video, there is a link to the entire article that was published on the Cure SMA website on Monday, December 3, 2018. Click HERE to view my video, and be sure to click on the link in the description field to view the entire document from Avexis Pharmaceuticals.I hope that all of you had a fantastic week and I hope that you do something for yourself this upcoming week that will make you a better person. God bless you and I’ll see you next Sunday. -
1 Reply
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I can relate. Little schedule changes and added appointments can throw me off too. Don’t worry, it’s not just you.
Keep us updated on your cough assist treatments. That machine took some time for me to get used to, but I’m grateful for it.
Hope you have a great, less stressful week ahead!
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