Jackie - On my bad days, I would sometimes scoot down stairs when I was a kid - when I got older, I would never do that, but I was very strong, so my grip on the banisters, even when it looked casual and incidental, was like steel! And I also was "clumsy" (I had no point of reference, so presumed it was my fault), so if I was ever in a position of needing to scramble DOWN a hill or anything uneven or unstable, I would either do it on my tush, or else in such a way that my center of gravity was as low as possible, to anticipate falls.

I know you didn't ask, but I would urge you to encourage your daughter to be as open and nonchalant about her Becker's as can be. If I had known that I had a "real" condition, and could have given a name to it, I think I might have felt a lot more free to take a few chances doing things that I refused to allow myself, because I didn't want to be embarrassed. It became kind of an over-riding issue in my life, not to embarrass myself with my supposedly non-existent condition. I appreciate how kids with CP, and other conditions more obvious than ours, are raised to celebrate what they CAN do, not dwell on what they can't. Lois

Type of Myotonia: MC- Becker's type

Country: USA

Yes, we do encourage her to be open about it. She does not seem embarrassed at all by it. She just tells people she has a muscle thing if she has problems and they say oh. Sometimes they ask her more about it and other times they just take that as an explanation.

Thanks so much for all the great help.
-Jackie

Type of Myotonia: Becker's

Country: USA