Hi I am a care provider for several boys who are non verbal and getting older (early teens)would like to hear from some others with boys who are verbal.One in particular went very quickly from being ambulatory to not walking at all.seems to have a lot of discomfort.Would love to have some feedback on what most boys this age find fristrating or painful.thanks!

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Hi becca,

My son is 17 and verbal. A couple of years ago, he broke his ankle after a fall and never walked after that. He said he was tired of falling all the time. I couldn't blame him. We didn't realize his ankle was broken because he never complained about it. It was swollen but that is par for the course with the DMD. Got him x-rays and a cast.

His biggest issue is with muscle contractures in the knees, ankles and elbows. He says it's not pain so much as a tightness that's uncomfortable. We talked to the physiotherapist and he was prescribed a special type of orthotic called: Gaitors which stretch out the muscles. He always says it feels better after he uses them.

I think he finds not being able to get dressed by himself so much anymore to be frustrating. More than that, he gets frustrated with watching other teens do what he cannot so I have to focus on what he can do.

That's all I can think of for now.
Marian
Thank you !we are all as a team so anxious to help these boys and their family.we need all the information we can get.

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