Second dose!

This afternoon, I received my second dose of Spinraza. I went to the hospital a little early, to do lab work, and then headed down to the neuro clinic. Honestly, there's not much to say about the actual treatment time - the drawing blood in the lab felt more traumatic than the needle in my back. I think that is mostly due to the shunt/reservoir placement, which makes access so much easier. Plus, I have a really wonderful neurologist! It went smoothly and took less than five minutes, I was in no pain, and I'm feeling good this evening.

People have been asking me if I feel any different yet, and I can't honestly say that I do, in terms of strength and mobility. I wasn't really expecting to this soon, though, and I'm trying not to over-analyze any bursts of energy as part of the healing. I think the work that is happening right now is the slowing down and stopping of the progression of the disease... which in my imagination looks a lot like Superman stopping a plane crash:

Pretty insanely epic, though hard to clinically measure or physically feel. However, I will let you know if I notice my superpowers evolving in the future! ;)

I was remembering that when I was in the neurosurgical unit at the hospital, there were quite a few doctors, nurses, and other medical professionals who knew very little about, or had very little experience with, SMA... which at first seemed weird, since it is, afterall, a neuromuscular disease. But then I realized that it's probably because there hasn't been a neurological treatment for SMA until now. Before Spinraza, SMA patients were primarily seen by orthopaedic specialists, because the main plan of care involved physical therapy... and even that was focused on children, not adults. I haven't had formal physical therapy in fifteen years. This new drug is really going to shift some things in the medical world!

Today, my doctor said that the neurosurgeon who placed my shunt is getting ready to do the same procedure on another adult SMA patient soon, and they are even talking about building a special program at the hospital to provide this option to other similar patients. Can you imagine?? And I got to be the first one! They must be pleased with the results, if they want to do it more. I feel so honored to be a part of blazing that trail.