Diagnosis

My mom was suspected of having Creutzfeldt-Jakob disease (CJD) in June 2006, only a couple days after she was admitted to the hospital. I received a call from her several days prior and she was worried something was wrong with her. A week earlier, a high school classmate of hers had passed away, and she thought there might be something wrong with her as well. This was strange since my mom never complained about being sick. After she was diagnosed and we spoke with family and friends, we realized many symptoms had presented approximately a month to two months prior to the diagnosis. She was forgetful, she would lose blocks of time, and she was beginning to repeat behaviors having not remembered she had already done them. She would also do things that were out of character both at work and at home.

I was at a conference at Indiana University in Bloomington in June 2006 when I received a call from my dad that mom was in the hospital, but they didn’t know what was wrong with her. When I spoke to her on the phone, she seemed slightly out of it. I asked her if she wanted me to come back home to Florida, and she said “yes” (I was living in Los Angeles). I had expected her to say, “no,” but when she said yes, I was on a plane the next morning.

Her doctor, who is absolutely amazing, believed fairly quickly that she presented symptoms of CJD. Later, we realized how fortunate we were that he diagnosed her so rapidly since sometimes there is a delayed diagnosis with this rare disease. He told us the outcome would be grim, but he was conferring with other doctors to get a second opinion. Unfortunately, the other doctors suspected this as well, but we wouldn’t be able to get a better diagnosis or treatment unless we went to specialists out of town.