One Day at a Time

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by Kevin Schaefer |

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At the time of this writing, I’m halfway through my Spinraza (nusinersen) loading doses. As I mentioned in a previous column, I’m receiving mine through the neck instead of doing the standard spinal tap injections. It’s certainly not for everyone, but it’s worked great for me.

Since starting this process, people have been asking me if I’ve noticed any changes related to my physical strength or capabilities. I know there are a lot of people who have been following my story who want to see results right away, and I just want to remind everyone that the effects of the drug vary on a case-by-case basis. Especially with SMA adults, it’s difficult to determine what kind of impact it will have.

So far, I can’t say I’ve noticed anything major in terms of movement or increased function. My upper-body strength is the same as it was before the first injection, and since it’s so early in the process, I have plenty of time to witness developments.

I did, however, experience a surge of energy the weekend after my first loading dose. The injection was on a Thursday, and I was at NC Comicon the next day moderating a panel. Normally, when I go to conventions or any kind of all-day function, my energy runs dry pretty quickly, and I usually crash as soon as I get home. This time, however, I felt wired both days that I was at the con, and even after I got home I stayed up for a couple of hours reading and watching Netflix.

Keep in mind that both days were jam-packed with panels, catching up with friends, meeting comic creators and media guests, watching the Wesley Snipes cinematic classic “Blade” on the big screen, and answering questions about my JACO robotic arm. The nice thing about all the medical equipment I use is that I don’t need to dress up to look like a cyborg at conventions.

It may seem trivial, but an energy boost of that magnitude is a big deal for me. My biggest concern going into this whole process was that the injections would drain my energy and force me to take things slowly throughout the loading dose stage. I also heard many of my SMA friends say that they experienced pretty grueling spinal headaches as a result of the injections. Needless to say, this was something I didn’t want to deal with.

So far though, I’ve not dealt with any major fatigue or headaches. I’ve been drinking more liquids than usual to try to prevent this, especially Mountain Dew and other caffeinated beverages. Between this and taking it easy on injection days, I’ve been able to maintain a solid energy level. This is huge, and I’m relieved that the whole process hasn’t interfered with my work and social life. I had a great Thanksgiving with my family, and I’m even being more intentional about seeking a romantic relationship. Yes, I finally succumbed and joined one of those online dating sites. I’ll talk about my experiences there in another column.

Right now, I’m just taking things one day at a time. It’s the holiday season and my calendar is pretty full in December, but more importantly, “Star Wars Episode VIII” is nearly upon us. By the time I go in for my third loading dose, I’ll only be thinking about what Luke will say to Rey on the mountaintop, who Snoke is and what the deal is with these Porg creatures. No amount of drugs will keep me from speculating about the future of the Star Wars saga, and I’m thankful that after two injections of Spinraza I’m keeping my priorities straight.


Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.


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