I’ve had Covid the last 2/3 weeks, so I’ve had a lot of fatigue. My mom’s freaking out because she has MD (FSHD) too, and knows what this means for us, but I’ve been able to move around, just not as much as normal and I’m not back to exercising yet. I try to make sure I don’t degenerate any faster than normal even when I’m sick, but it’s a… Read more

I definitely understand how you feel – I get frustrated with myself and my MD when I fall or trip, and I let myself feel angry for a bit because I can’t snap out of it right away.

I spend a lot of time when these things happen reminding myself that this is something in my life I can’t control, and that honestly helps mean a lot. I do try to… Read more

We both have FSHD. I know she likes to have some decor up, but she’s stubborn about asking people for help even though family/friends would help if she asked. When I’m at home for Christmas, I usually do a lot of it and ask my siblings (none of them have MD) to help me with the things I can’t do. She just hates asking for help.

The same thing has happened over the years at my parents’ house because my mom just can’t do some things anymore, like decorating a tree, and my dad doesn’t care to do it. They have a prelit one that my mom loves, and they don’t decorate it anymore. They also don’t put out most of the other decor at this point. When I’m home, I do as much as I… Read more