Painful Memories
My wife Shirley died in 1989 of
Creutzfeldt-Jakob Disease (CJD).. We had been married 48 years.
It was horrible. The Creutzfeldt-Jakob Disease devastated her
brain. In just two to three months Shirley went from ordinary
walking, to walking with a cane, to a walker, then a wheelchair.
She was dead within seven months.
She didn't know she was dying, but she didn't deserve to die that
way. Sometimes she would start shaking - her whole body would
shake - and there was no way to stop it. She'd try to talk to me.
I could see she knew what she wanted to say, but it would come
out gobbledygock..
She was correctly diagnosed, but there was no treatment.
She died a year after spending three weeks on the United Kingdom
island of Jersey visiting friends. First I saw Tom Brokaw talking
about Mad Cow Disease on the news and then I read about it in
Today's News-Herald. Now at least I know where she caught this
disease. All the time I never knew.
The rare disorder was confirmed by autopsy report after Shirley's
death. We had to be sure it wasn't something our four children
would inherit.
I learned a great deal about CJD from the National Organization
for Rare Disorders in New Fairfield, Conn.
My wife had carpal-tunnel syndrome surgery in 1989. That seemed
to trigger the disease. Shortly after the surgery she said,
"Look at my hands, they're wonderful." We then decided
to go to a mall that day.
She said to me, 'Am I walking to the right? I feel like I am
walking to the right.' And that was the beginning of it.