I can't tell you how happy I am to be able to say there are only three days left of me in this brace. The frustration and anger just builds every day that I wear it. I tried to make perler bead crafts tonight, and it worked out pretty well, but I was struggling the entire time to lay the beads right. Add to that the frustration of setting up a fish tank in braces, and getting all of my clothing hung up as well. To be honest I just want to take them off and not put them back on, but I have to keep going for the sake of research.
Using the mouse for my computer is very difficult without the use of my wrist. I struggle to text and have to hit one letter at a time instead of fully using both my thumbs. It's extremely hard and very frustrating beyond belief. Like I said, I'm looking forward to taking them off and passing them down to the next member of our group.
~Krisen
Have you considered that many individuals with FOP also have locked jaws that significantly impacts dietary intake? Depending on where a jaw froze, one might run the risk of choking or be restricted to a liquid (or soft food) diet.
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