Questions & Answers

I recently bought my first desktop computer and I am so excited! I am currently using the magic trackpad, the built-in on screen keyboard, and voice control. Is there anything else I could be using to make things more efficient? I am on my computer pretty much all day, and I'm always looking for ways to be more productive while simultaneously reducing my fatigue.

I'll soon start taking risdiplam and I didn't get surgery (don't know if I still can get it).

So I was wondering : given that scoliosis in sma is due to muscle weakness, did anyone of you notice some stabilization of scoliosis while on the drug?

E.g. alexa, smart bulbs, etc.

I am looking for some suggestions for direction
When reaching out to them, they advised me there was nothing they could do about my broken wheelchair. The parts have been discontinued and are unable to be obtained. The only course of action would be to get a new wheelchair. This was the worst news possible. I do not just rely on my wheelchair to move around, but I also use my wheelchair to be able to use my arms. I move my wheelchair to where I need my hands. So, my wheelchair functions… read more

So, this is a bit of a funny question, but I noticed on an SMA news forum a common complaint was the fact that many individuals with SMA said they looked much younger than their age and presumably treated like a child despite being an adult. I felt like this most of my life and only now that I am...well...old...have I only begun to view this as a positive and not a negative. Frankly, I never really connected my SMA with looking younger but now am wondering how common is this? Is it more a… read more