Hi and congrats on getting Evrysdi! I didn’t realize there was an age limit, that’s nuts.
I know the anxiety well. Starting with possible side effects to the question of how much hope is reasonable, what can you expect to improve.
Historically, I’ve always had constipation but my body’s first defense is nausea. You never know with a new Rx so I planned on staying home with backup help. We left the transfer sling for my Hoyer lift under me as that would eliminate one time consuming step if there was a mad dash to the bathroom. It’s demoralizing when you don’t make it to the toilet in time.
One day, two days, nothing dramatic.
Had some nausea, tried taking the Rx at least 1/2 hour before food on an empty stomach and clear sailing from then. I’ve always been restless and prone to migraines, didn’t notice any significant changes there.
What I haven’t seen is anyone talking about the emotional process. The overwhelming anticipation and underwhelming reality DeAnne mentioned.
I was about 10-12 years old when I verbalized that I was not going to get better, that a “progressive neuromuscular disorder” only had one prognosis: slow decline without any real brakes. The sun rises in the east, the earth is round and SMA does not improve. Allowing yourself to hope for change means risking crushing disappointment. And then I peeled a tangerine, something I had not been able to do for 2 years. My doctors mentioned the volume of my voice had risen. These small changes mean the progression has paused and they’ve found ongoing improvements.
What’s been most impactful for me has been focusing on what I can control. I’m very deliberate with my food choices, I meditate daily, and am engaged in projects. Keep in mind, these are strategies that have worked for me but your mileage may vary.
The purpose of fear is to point out dangerous terrain, to keep you alive. You’re asking those who’ve gone before.
We get it.
We’ve lived it.
We got your back.