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Agroskater250 karma

Hi,

I know you have hearing aids and so on, is that related to FOP or what? Is there other effects like that unrelated to muscles if so?

Can you feel the muscles calcifying where it's noticeable right away or is it just progressively less motion slowly over time?

While I'm sure this is a big part of your life is there anything you'd like people to know about you outside of this?

Since so few people have this is there a community where you're able to talk to other people who have FOP, kinda as a support network of like individuals?

Agroskater104 karma

Yep, that's me.

TIL that's how ears work, and I'm sorry to hear that, hopefully the aids help enough that you're relatively uneffected.

You mentioned flare-ups, can you elaborate what that feels like? It's hard to imagine but I figure similar to the muscle soreness?

Agroskater62 karma

Thank you for taking the time to answer my questions and everyone else’s.

I got so much love and respect for you man, you’re way tougher than I am

Agroskater59 karma

So during that timeframe do you try to position yourself into more favorable ways to help mitigate the way that it leaves you?

Or is that too difficult (I figure over time this is something you have less control over)