Lockhart family and others draw attention to rare, deadly disease

South Jordan • Doctors thought Becky Lockhart had a flu that would pass in a few weeks. It wasn't until the Utah House speaker was in New York and couldn't find the elevator in the hotel lobby that her family and friends realized something more serious was wrong.

Within weeks, her motor skills were failing, along with her reasoning, her speech and eventually her ability to swallow. She died in January of Creutzfeldt-Jakob disease, the most prominent case of a Utahn stricken by the extremely rare neurological disorder.

On Saturday, Lockhart's family and friends, and friends of other Utahns who have lost loved ones to the disease, gathered to bond, share their stories, release purple balloons and raise awareness of the mysterious illness, which strikes about one in a million people each year.

"When you know that someone else has gone through something it's easier to go through it, so this is an opportunity for us to share stories and just be with each other," said husband Stan Lockhart. "The other thing is, we want to increase awareness with Creutzfeldt-Jakob Disease. It's so, so rare, it's hard to get a diagnosis. … It takes forever to figure out what [it is]."

The brisk, windy Saturday morning walk in South Jordan was one of numerous similar walks around the country intended to draw attention to the disease.

Doctors don't know what causes the illness and the only way to definitively diagnose the disease is to perform an autopsy on the brain after the patient has died. It aggressively attacks the brain, affecting speech, thought and motor coordination. It is always fatal and there is no treatment that slows its advance. Typically, it claims its victims within just a few months or even weeks.

Linda Kitchen had worked 22 years at a private school and one day told her husband, Lloyd, that she was having difficulty remembering things.

A doctor gave her some written tests to test her brain function and on the second visit suspected she had CJD.

"It was the second visit, they walked in and said, 'You have a terminal disease and there's nothing we can do about it,' " Lloyd Kitchen recalled.

Linda Kitchen lived longer than most, but her condition deteriorated and for the last six months was dependent on help from others. In 2012, a year and a day after doctors diagnosed her ailment, she died.

"It started off with her speech, she couldn't remember words, she couldn't remember sentences," said her daughter, Jami Hokansen. "Her balance was off, almost like Alzheimer's symptoms and then it gradually progressed, her handwriting, her speech, her motor skills and it slowly deteriorated."

Ray Bills was 84 and fought in the Pacific during World War II. Creutzfeldt-Jakob claimed him quickly. After he started showing symptoms, his children took him to the Veterans Administration hospital and he suffered seizures.

They began a battery of tests and he improved temporarily, was up and walking around. But as the week progressed, he couldn't hold a spoon, couldn't swallow and within three or four days slipped into a deep sleep, said his daughter, Deanne Curtis.

"He was just an old cowboy, born and raised here" in South Jordan, said his son-in-law, Gary Curtis, who lives on the land where Bills grew up and walked with his wife to remember him.

Herb Katz was on the golf course last December, where he could be found five days a week, but was struggling with his game. He went home and told his wife that he thought he might have had a stroke and they went to the hospital where they started giving him speech and physical therapy.

He struggled with his speech and facts, but within a few weeks started developing other symptoms that were more severe, according to his son, Joe Katz. He developed paranoia and started having motor issues and hallucinations. They went back to the hospital where he was diagnosed with CJD. He died a month after those initial symptoms on the golf course.

Joe Katz said it happened so fast that the family didn't know what to do, but there is comfort in being with others who have been through the ordeal.

"And hopefully we can at least get the word out to other people so when they do get this diagnosis they know there are people they can turn to and at least ask questions," Katz said. "The time is probably short, but they can understand what's happening and get the perspective of people who have been through it, so they have some comfort."

gehrke@sltrib.com

Twitter: @RobertGehrke