Carly’s story
Like Paul, Carly also lives with myotonic dystrophy. She also had symptoms for many years before diagnosis, but her symptoms are very different. At age 30, Carly has difficulty with her speech, excessive sleepiness, and dyslexia, and she is beginning to have heart complications. “I can sleep 20 hours straight and still wake up tired,” she says.
Carly works full time at a bakery where she’s on her feet and lifting things all day. She’s exhausted when she leaves, but she’s grateful for work that comes with health insurance and other benefits. “I definitely think that my work keeps me going. If I was sitting around all day, it wouldn’t keep me as fit as I am,” says Carly.
Carly knows that things may change for her in the future. “I think I go back and forth between denial and acceptance. It affects everyone differently, so I may never have the same kind of issues. So, it is scary, but it isn’t, because nobody can tell me what it will look like.”
Carly enjoys the abilities that she still has and does things like zip-lining with her dad. Life with myotonic dystrophy requires careful planning and compromise but is not without joy.
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