I also float or am just sitting down somewhere. So validating to know others experience the same. Always thought it was just me.

no not too bad. I like that if I am sweaty, I can just get a new pillowcase rather than having to wash and change the cushion cover.

So I have recently tried a new hack because I am tired of all my skirts and pants getting ripped. I bought a set of black cotton pillowcases and lay one over my cushion before getting in the chair. Then my care providers use the pillowcase to move me where I need to go. So far it has been working well.

I have been on Risdiplam for about 6 months now. I didn’t really have any of the side effects with it but I feel like I might be getting slightly weaker. I have also been having hand spasms. I am going in for an assessment in January to hopefully see. I don’t feel like I had this kind of issue with Spinraza. The doctors also say it could take… Read more

I was told I was a 2.5, whatever the means. It is so arbitrary. It just goes to show that there are some things even the “experts” don’t know even if they try to classify it.

I had to go through this a few years back and it was tough for sure. Mentally, it took a toll on me. But it is one of those things that I had to realize was out of my control. I have to accept that I will always need personal care providers (at least until robot technology advances enough to fill this need – fingers crossed). Therefore,… Read more

I have been watching it mostly for the representation, which I think is great. The show is ok otherwise. But the son is definitely my favorite part.