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Michelle’s Story

Michelle is a freelance editor and writer based in Philadelphia, PA who describes her uncle’s symptoms and progression of CJD in her essay “Tangles,” published on her Story.

Right around my uncle’s sixty-third birthday, in April 2013, he started to have trouble with his balance. We were celebrating his birthday at my parents’ house, and my mom noticed how he suddenly seemed to be walking “like an old man.” He began having difficulties at work and had a minor car accident. He went to several doctors and specialists and a rehabilitation facility, but no one knew what was going on. He got rapidly worse over the next few weeks with abilities vanishing each day. One day he could speak, the next day no more. One day he could make eye contact, the next day that was gone, too. It was horrifying, but we held on to hope that a diagnosis would show how to help him get better and we would get him back.