I got to meet with my Biogen counselor today for the first time in person. He was in town to meet with some doctors at the hospital, and took some time to meet me at my favorite coffee shop.
While I sipped on my chai latte, he asked if I would mind sharing some of my history with him. Most of the patients he works with are infants, so he can't talk with them directly, and there isn't much to their life story yet. It made me realize again that I am in a small percentage of SMA Type 2 adult patients who are currently pursuing this treatment. So I happily shared my story, including a lot of what I wrote in my previous blog post.
Then he asked me about my treatment goals: "What results do you hope to see through this drug?" That's what I call the million-dollar question, and I told him about my struggles with having so little information.
He explained to me that the reason there aren't solid answers about results is that every SMA patient's weakness progresses differently. Even looking at the difference between my brother Kevan and I, who are close in age and are from the same immediate family and have the same diagnosis - we have had very different manifestations of our weaknesses, and have our own unique abilities as well as struggles. Thus, we would have different responses, and different response rates with the drug.
He said that a good first-step goal is to stop the progression of the disease. This is the top priority! If the progression stops, I can stabilize and maintain my current abilities. From there, I could have new goals for rebuilding and restoring lost strength. I would create a timeline of my weakness, and work out goals in reverse. For example, what could I go 6 months ago that I can't do now? So for me, my hands and throat are the areas I've experienced the most recent weakness in, so they would be the muscles I would work to restore first.
That conversation really helped me! At least now I have some initial goals. Now, if I could just get started with the treatments...