Hi,
Definitely let us know if/when you have an update!
There aren't many people on this thread. I never got any response to my posts once I discovered this forum half a year ago, so it can feel lonely having this rare condition.
The back brace made me stand maybe an inch more upright, which was semi-pointless. Also, I lost weight, so it no longer fit anyway. But I really hope it will help you! We're all different.
I confess that I'm still shy about going out walking in my neighborhood with my "cool" red byACRE, but I'm trying to get over myself. So I can relate to what you're saying. (And btw, I'm older. Nothing like an old fool?) I think a big part of my problem is being afraid that I'll look vulnerable and weak. Phooey on that. But it's a bummer dealing with recognizing you have an obvious disability, probably especially if you remember a time when you looked more "normal".
Walking is really important to our health and feeling of independence, etc. So I hope you'll be able to get out and do that.
Having your face facing the floor/ground can limit your social interactions. That's no good! So use whatever you need to to pull yourself a bit more erect, so you won't become a hermit.
Do take care of your wrists.
Wishing you all the best!
Hi comeback, love your outlook! Finally had my neuro appt. Was nice to actually be believed for once and have a clear plan on figuring this out. I’ve got an EMG and a muscle biopsy ahead of me with further tests if needed. How are you doing with the Camptocormia? Was very interesting to see another post about the vibration plate. Never thought of that! Oh - and happy new year to everyone 🙂