My story begins in April 2006. My mother began showing personality changes. A woman who was usually outgoing and loving and served as the pastor of her church for 19 years became withdrawn, depressed and forgetful.

My mom was suspected of having 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.

We had been married 43 years, and I had been retired for 12 years in 2005 when I became Fumi’s main caregiver for about a year and a half.

On May 18, 2005, we had plans to celebrate one son’s 40th birthday and our older son’s graduation with a master's after returning to school for a mid-life career change. About 3:00 p.m., our neurologist asked us to see her as she had news on lab tests and a diagnosis.