No Change is a Good Thing
Today I’m recouping from my annual neurology visit and assessments. Even though it doesn’t seem like it should be that taxing, it takes a lot out of me. The two hour travel time each way is the worst. Going forward I’m glad it’s only once a year. Last year I got away with a tele-visit, but this year my neurologist wanted updated pft’s. That means in person it is. Leaving at 9 a.m. we arrive back home at 5 p.m. just in time to give Horton his supper.
I’m still not quite sure what the purpose of a neurologist is except to prescribe treatments. In fact I hadn’t seen one in years until Spinraza came about. I did get to show off my robotic arm, so there was that. Our main discussion yesterday though revolved around continuing treatment. Although I like Spinraza better I don’t feel the difference is enough to warrant switching back. Now that my stomach issues are being managed for the most part continuing risdiplam/Evrysdi makes sense. I feel the main difference is Evrysdi provides consistency. While Spinraza gave me more of a noticeable boost it isn’t maintained consistently.
My suspicion confirmed with the pulmonary function tests and physical therapy assessment, not much has changed in the last couple of years. Of course I’d love to see leaps and bounds improvements, but that’s not how SMA works. Maintaining where I’m at is a win in my book. Who knows what next year will bring. Folded paper watch out.
Do you find neurology appointments beneficial? Where are you in your treatment journey? Do you prefer one or the other? I’m curious about Zolgensma too. Obviously it’s not currently an option for me, but I’m wondering if parents have been happy with that treatment option.