Gastro intestinal issues. For nearly my entire life, I would get terrible stomach aches. I eat like a bird, so it wasn't from over indulging. I went to so many specialist, was told repeatedly it was 'all in my head', took supplements, probiotics, changed diet numerous times...spend forever in the bathroom. It was only after coming across a tiny article ...probably on here...that I ever saw any mention of it being an effect of SMA. Not a single doctor of the myriad of doctors ever mentioned this as a possibility and it is something family members don't understand as it doesn't seem directly related to muscle weakness. Is impossible to explain to people too.

The slow progression of the disease. So slow you don’t realize that you are losing muscle strength until one day no matter how many times you try you can no longer do that thing you used to be able to do that was difficult.

Walking, or being able to walk without support

In one day, I couldn't standup no more the next day from the toilet. I have tried several times during the day, but with no luck, unfortunately I had to learn and except for what it was...

I think the hardest part for me is being able to do something normal to go. You can’t do something or it’s very difficult and people look at you strange.