Muscular Dystrophy suddenly becoming real - Mothering Forums
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#1 of 2 Old 04-14-2013, 08:43 AM - Thread Starter
 
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My oldest son is 14, and we've known that he has MD for about 8 years. His half-brother on his mom's side has a rare, aggressive infantile onset form, which led us to notice some of the more subtle signs when my son was young (facial palsy, winging of the shoulder blades). But it hasn't been until just recently that MD has actually affected his life. Suddenly his arms get tired and he has trouble washing his hair or changing a light bulb. He's having trouble with his ankle, and we ended up getting him a wheelchair at the zoo yesterday.

The hard part is really how this is affecting him emotionally. He's very independent, and now he has to ask for help. He's worried about appearing lazy. And he's afraid of ending up in a wheelchair all the time.

I just want him to know how much we all care and are happy to help him. At the same time, I don't want to make him feel like we think he's incapable. Luckily our family is very close, so I know we can get through the hard parts together.

Michelle, wife to DH, and momma to DD16, DS15, DS12, DS10, DD9, DD7, DS5, and baby girl born Christmas Eve 2013!
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#2 of 2 Old 04-15-2013, 07:51 AM
 
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I had a good friend in high school with MD. She was in a wheel chair full time- but had walked until she was 10 maybe? Then started using the wheel chair more and more and eventually full time. She was one of the most popular girls in school- and people tripped over themselves to help her. She had boyfriends and amazing parties at her house. She lived a very full life, even though she needed support from people who cared about her. She even drove this fancy little Miata with hand controls. Best of luck with your son, I am sure he knows how much love and support he has, even if he is going through a morning period. 

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