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My Weekly Journal – 02/25 Through 03/03
Monday, February 25, Through Sunday, March 3 – As bad as the previous week had been, this past week was a complete 360° turnaround. Everything fell into place and for some reason, nothing earth shattering happened. My job with Bionews Services is keeping me extremely busy and I couldn’t be happier. The owners of the company came to Dallas on Tuesday, and they came by the house and we had a few hours so that we could sit and talk about future plans for the company and potential growth opportunities for my division. I’m now their Director of Multichannel Content, and I oversee all audio and video products that we produce throughout the company. While my plate is full, you will never hear me complain about being too busy. I know people who complain about their jobs and they hate the people that they work with, but you will never hear that coming out of my mouth. The owners of the company are aggressive with their growth plans, and making me an integral part of this company has proven to me that hard work does pay off.
When I went in for my workout with Emily on Tuesday, we worked on all of my core strengthening exercises. Everything seems to be going great with regards to physical therapy, and it seems that my exercises are getting easier each and every week. While I know I have a long way to go, the feelings that I am experiencing with regards to strength are exciting. As soon as one exercise gets to be too easy, Emily comes up with another one that challenges me. I’ve been lucky to have Laura and Emily as my therapists. Next week, Emily and Vicki will transfer me from my wheelchair to the therapy table and we will work on my balance exercises. Emily is going to start using a therapy ball as part of my balance exercises. She will place the therapy ball on my side, and while my arm is on the therapy ball, I have to lean to one side and come back into a neutral sitting position. This really works the core muscles along with the muscles in my neck. While we did this exercise nearly 2 weeks ago, we will begin multiple repetitions on both my left and right side beginning next week. Emily told me that she is also going to put the therapy ball in front of me, and have me lean forward and come back to a neutral sitting position as well as using the therapy ball on my left and right side. As I said earlier, as soon as I get comfortable with one exercise, they hit me with a new one. This continually challenges me and I can tell that my core strength has definitely improved. Next week when I go in for my workout with Emily, I will take pictures of us doing these new exercises, and I will put these pictures together in a video on my YouTube channel next Sunday. Along with working out, I’m also preparing to go back to UT Southwestern Medical Center for my eighth injection of Spinraza. My appointment is for Monday, March 11. I will discuss this in greater detail in next Sunday’s video.In this week’s video, I discuss a question that many of us are going to be facing in the coming months. With the potential approval of ZOLGENSMA from AveXis Pharmaceuticals, in May or June of this year, those of us on Biogen’s drug, Spinraza, will be faced with the decision as to whether or not we should forgo the Spinraza treatments and began ZOLGENSMA, or remain on Spinraza. In my video, I give you my opinion as to how I feel regarding this potentially life-changing decision, and I share my thoughts on how I’m going to approach this decision. Click HERE to view my video.
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 next Sunday.
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4 Replies
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Great points about deciding between Spinraza and Zolgensma in the future. Like you, I’m good with Spinraza and am not in any rush to switch. I’ll keep an eye out to see what happens, but as it stands I’m not looking to. Thanks for bringing this topic up.
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Think I’ll stick to doing pt vicariously through you, ha ha.
As far as switching from Spinraza I still feel that other options are a ways out for us ol’ timers with SMA. Spinraza has been out for two years already. That’s not to say if something better comes along I wouldn’t hesitate to jump ship. Spinraza has given me a new lease on life. There are a lot of “ifs” though. If administration was easier with similar results I would probably go for it in a heartbeat. I would much rather treat the underlying cause as Zolgensma does. Will it be effective in adults? I see this as a good roundtable discussion. I’d be in if you’d ever want to discuss it further.
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The big difference for me between Spinraza and Zolgensma is that Zolgensma (at least so far) is a one time injection, no maintenance doses every 4 months. Not having to do an intrathecal injection every 4 months is worth it if everything else was the same. Every time you do one there’s a chance for complications that have nothing to do with the drugs themselves. I’ve had good and not so good injections already and would like to not have to worry about doing them again. Zolgensma might even be able to be injected just into a vein, no intrathecal injection at all, since it can cross the blood-brain barrier.
Also, Zolgensma, if I’m understanding it right, doesn’t seem to depend on how many copies of SMN2 you have whereas Spinraza works better the more you have. In the trials, Spinraza patients will 3 copies did considerably better than those with 2. I have 3 copies so Spinraza works pretty good for me, but if you have 2 or less, Zolgensma will probably work better.
But ultimately it’ll come down to whatever our insurance decides for us.
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DeAnn – I am exactly like you. I think for the time being, I will probably stay with Spinraza because I have seen some positive results. Once it becomes available to adults with SMA Types 2 and 3, and they have the Intrathecal delivery perfected, I’m still going to sit back and wait to see how others do on this treatment before making a decision to switch. If they show promising results, and these results would be better for me, then I would consider switching.
Lupa – ZOLGENSMA is going to be a one time injection for infants with SMA Type I, that are 9 months and younger. AveXis is currently in clinical trials for the Intrathecal (IT) delivery for those of us that are older. Infants are receiving their dosing through an IV, but, if it does get perfected for those of us that are older, it will probably be via an Intrathecal injection versus an IV. The reason why they are doing an IT delivery for adults is that the drug has to get past the blood/brain barrier. They can accomplish this through an IV for infants because of their smaller size, but adults like us, will have to have an IT administered treatment directly into the central nervous system. Another thing that you need to keep in mind, is that this is going to be a one time dose for infants, but that doesn’t necessarily mean that it will be a one time dose for those of us that are adults. That’s one of the things that they’re testing for during this clinical trial. They may find out that those of us that are adults may need more dosing, but until they finish the clinical trial, this is purely speculation on my part.
I also agree with your assessment regarding the number of copies of the SMA2 gene that you have. ZOLGENSMA is a gene therapy, whereas Spinraza is not. There will definitely be some differences between the two, and I am very hopeful that once they get past through the FDA for an IT delivery, we will probably see some outstanding results in adults like us.
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