Today, during our third visit to Texas Neurology, my doctor and I documented my baseline vitals, bloodwork and physical tests, and I learned how to self-inject the ALS trial medication into my belly and gave myself my first shot!
This was the culmination four months of back and forth emails, phone calls, and assessment visits. No lie, I’ve been a bit nervous and anxious about having to self-inject, but in the end it was easier than expected.
After completing more paperwork this morning, the research doctor–Dr. Nasri–assessed my baseline lung and muscle function, the latter feeling more like a boxing match! He then sent me to the lab for bloodwork, where ten vials of blood were extracted. As I walked back in the exam room, Dr. Nasri had a brand new back pack waiting for me, and five boxes of pre-filled syringes for daily self-injection. My heart started beating a little faster.
After reviewing the instructions with Dr. Nasri, it was time to do the deed. The disposable syringe has a pretty short needle and is designed for patients to self-administer, so right away my anxiety was reduced. I lifted my aloha shirt over my belly and went for it, and within a few seconds it was done. No pain or discomfort (or photos of that bare-belly moment!).
While I’ll never know if I’m on the active drug or the placebo, it feels good knowing I have taken the first real step in helping science find a cure for this terrible disease, making this long journey worth it.
Oh yeah, the breakfast after was pretty great too.