I am writing this on August 15, 2019, and I just received word from my doctor that I received insurance approval for a year of Spinraza. Without getting too technical, this is essentially a treatment that will ideally help people with my condition, Spinal Muscular Atrophy, slow the progression of our always increasing muscle weakness, and maybe even began back a little bit of function and strength. The results vary obviously from person to person, but I am incredibly excited to be able to have the opportunity to move forward with this treatment. My mind is racing right now with about a million different things, so I apologize if this post seems rather disjointed compared to my normal style where I tried to organize my thoughts a little bit more coherently.
First, I am not an overly emotional person as a general rule. No, I did not cry when I got off the phone with my doctor. But, I will tell you that I did feel a little bit of emotion. SMA is an interesting condition because you are fully aware of what is going on with you. Every year, you lose a little bit of muscle strength. That’s just the way it is. In general, I wouldn’t say that my ability to perform my everyday functions has changed all that much for a long time. Yes, I need help with a lot of things. At the same time, I’m still able to help myself eat, drive my chair, use my computer, be at work relatively independently, and generally navigate the world with plenty of help, but with a semblance of independence.
Understanding that SMA is a progressive condition, I have to admit that I have wondered when it stops or how far it goes. I drive my chair every day a lot. My muscles are very capable of doing that, and like most muscles for anybody, you lose the ones that you don’t use. I use those muscles quite often, so I don’t know that I would ever lose them, but it is a very real concern for someone with SMA. I don’t dwell on this, but I would be lying if I said I never think about that type of thing.
To think that there is a treatment that might help me remain roughly where I am right now is surprisingly encouraging. Of course, I would love to see my muscles improve. I would love to gain more functionality. Who wouldn’t? That said, I don’t think my life is all that bad right now. I am content with where I am at, and even if Spinraza does nothing more than maintain my level of status quo right now, that would remove something that I seriously have worried about.
Another thing that it is really weird to think about is that there is even a treatment for SMA. It is not a cure by any means, even if applied to infants at a very young age. I am trying to be realistic and not expect anything insanely amazing to happen as a result of this medicine. At my age, the results are most likely maintenance with perhaps a little bit of improvement, but there is plenty of room for a placebo effect and confounding variables in that little bit of improvement.
However, I have lived the past 28 years without the prospect for any type of meaningful treatment. You obviously do what you can. I get stretched out every day. We go to the swimming pool to try to help my flexibility and mobility. I know some people do much more intensive physical therapy regimens than I have ever done. However, all of this largely delays the inevitable, knowing that the decline is going to continue at 3%-5% every year. Not to come back to this point again, but it blows my mind to think that there may be a potential option to remove this reality from my mind. That is what I have been feeling for most of the afternoon and night. It really is a paradigm shift from where I am used to being.
Frankly, it is making me look at SMA differently. Again, I’m not delusional. I know my life will probably change very little if any from the results of these injections. I know that. But that’s the point. Change for someone with SMA is almost always negative. You very rarely, if ever, get better. The fact that change can be slowed and ideally held at bay is unbelievably huge. It is something that I don’t know that people without SMA can necessarily wrap their heads around. The closest comparison is probably the reality of aging. As people get older, they know that, even if they do everything they can to try to stay in shape and live a healthy lifestyle, the reality of old-age will eventually begin to wear out their muscles and reduce their functionality.
Imagine how you would feel if there was something that would be able to help you fight off the effects of aging? It is not a great parallel or anywhere near exactly the same, but maybe this can help you understand a little bit more how I feel about this prospect that I may be able to maintain my strength rather than lose it as rapidly as I do. It is a big deal.
I guess that is my most immediate gut reaction to this development. Obviously I’m grateful to have the opportunity to begin making plans for my initial loading doses. We still have some work to do to figure out how it is going to be applied and injected into my spine. Yes, I still am not a fan of needles for anyone who was wondering. I’m not looking forward to that part. But, this gives me a sense of potential stability. I value stability an awful lot in most areas of my life, but up until this point, the possibility of SMA being stable was virtually nil. I am pretty good about accepting that reality most of the time. I don’t dwell on it very often because it is something that is so removed from my control that there is really no reason to actually worry about that. That said, now thinking about the impact that this medicine may have, it is reopening these thoughts in my mind.
I would love to have some additional strength to do something with. I don’t know what I would want to do, but it would be very useful. However, there is definitely something even deeper at play here. It is an understanding that something could happen to me which is unbelievably good and changed my life by making my life so that it changes less. How weird is that? That’s the contradiction I feel grateful to be considering tonight.