Palestine death attributed to CJD

April 12, 2001 Athens Review (Texas) by Paul Stone

PALESTINE - In a matter of three short months beginning late last year, Mack Gore painfully watched as his wife, Irene, was transformed from an active, retirement-aged woman to a helpless invalid unable to communicate or dress herself.

"Her last (square) dance was September 25 and three months later she was essentially brain dead," Mr. Gore said this week. "That's pretty fast."

On March 10 of this year, Irene Gore - who had lived in Palestine since 1966 when she moved here with her husband - died at the age of 64 in a local nursing home.

The cause of death listed on Mrs. Gore's death certificate is Creutzfeldt-Jakob Disease (CJD), a rare, fatal brain disorder which causes a rapid, progressive dementia and for which there is no cure or treatment.

Although CJD is caused by a transmissible agent, the disease is not considered to be contagious in the traditional sense.

"The Creutzfeldt-Jakob Disease occurs about one out of every one million people," said local cardiologist Dr. Robert F. McFarlane, who signed Irene Gore's death certificate, listing CJD as the cause of death. "With 19 or 20 million people in Texas, we should have about 19 or 20 (cases)."

Julie Rawlings of the Texas Department of Health's main office in Austin said CJD was given "reportable" disease status by her agency in 1998, following "a cluster of CJD in northeast Texas" in 1997.

In '97, Rawlings said there were seven confirmed cases of CJD in her agency's Region IV, which extends to Oklahoma, Arkansas and Louisiana, while being connected by Paris, Palestine and Carthage.

"We never found anything," Rawlings said about the concentration of cases in northeast Texas. "We asked enough questions to fill a 70-page questionnaire ... You name it, we probably asked it. Again, we didn't come up with anything significant."

Since becoming reportable in 1998, there have been a total of 23 confirmed CJD cases in Texas, Rawlings said, adding last year's data is not totally complete.

While there is no debate among members of the medical community about the cruel, inevitable effects of CJD, its relationship to bovine spongiform encephalopathy (BSE) - or what is commonly referred to as "mad cow disease" - is more unclear.

Since his wife's health began its rapid decline last fall, Mr. Gore has become educated on diseases such as BSE and CJD - which are grouped under the heading transmissible spongiform encephalopathy (TSE) - via the Internet. He understands terms such as new variant CJD, which experts believe has been responsible for the human deaths in Europe, and classic CJD, which is what his wife apparently died from.

Mrs. Gore's medical history was not without setbacks. She had open heart surgeries in 1979 and 1998 and briefly battled colon cancer in between. But McFarlane, who treated the woman for more than 15 years, described her as vivacious until the rapid disease caused her death.

"She was in her 60s," McFarlane said, "but appeared to be in her 40s."

McFarlane said Mrs. Gore came to him last August, complaining of "just feeling funny." The local cardiologist said he discovered a cardiac arrhythmia and prescribed appropriate medication.

A short time later, she still "wasn't acting herself ... Her personality seemed to be changing," McFarlane recalled.

Mrs. Gore, who was cared for by other specialists in addition to McFarlane during the final months of her life, would soon have difficulty performing simple addition and telling time, the doctor said.

With it now apparent that Mrs. Gore's mental facilities were declining, McFarlane initially thought she might be suffering from Alzheimer Disease, a progressive, degenerative dementia which, like CJD, includes loss of memory, understanding and judgment.

However, while Alzheimer's progresses at a steady pace, Mrs. Gore's condition was going downhill almost by the day.

"She was close to being a total vegetable," McFarlane said. " ... She was almost foaming at the mouth. She was just so out of it, just so unresponsive."

About two weeks before last Christmas, Mr. Gore said his wife's Tyler doctors informed him that they believed she was suffering from CJD. A definitive diagnosis of CJD requires a brain biopsy which is invasive, costly and risky. Such a procedure was not performed on Mrs. Gore.

While the form of CJD which claimed Mrs. Gore's life and mad cow disease are distinct in his opinion, "The end result is the same," McFarlane said.

"I can't even speculate where it came from," McFarlane said.

Before the onset of his wife's CJD, the Gores would load up the RV for a couple of months during the winter and head to the Rio Grande Valley to play with the snowbirds. Summers meant traveling to New Mexico and Colorado to escape the intense Texas heat.

Both locally and on the road, they were avid ballroom and square dancers and members of the Dogwood Squares club. They were active, enjoying the final act of their lives together.

In September of last year, however, life as they had known it throughout most of their adult existences began to change. It was then that Mrs. Gore began complaining of blurred vision. She had an eye examination and, within a month, laser surgery was performed with few results.

Mr. Gore would soon come to find out his wife's vision problems were the direct result of CJD, a disease that as recently as seven months ago he had likely never even heard of.

By early October, Mrs. Gore was having short-term memory loss. She was referred to a neurologist, Mr. Gore said.

On Oct. 25, 2000 - one of many dates during this personal nightmare that Mr. Gore quotes from memory - a retina specialist told the couple that Irene Gore's eyes were fine. The problem was the result of her brain not processing signals properly, they were told.

Less than 20 days later, Mr. Gore said his wife was becoming "considerably disoriented," on one occasion asking, "This is not our car. Why do we keep changing cars?"

While the couple was at home, Mr. Gore said his wife would imagine other people were there, sometimes speaking to them.

By Nov. 17, Mrs. Gore did not know where her kitchen was. Five days later, she could no longer feed herself. By Nov. 26, she was confined to a bed.

On Dec. 12, Mr. Gore said doctors told him they believed his wife had CJD.

"It's just like somebody's brain just melts away in two months," McFarlane said. " ... It's just a horrible, very dramatic, relentless, untreatable illness."

On Dec. 20 after being hospitalized for three weeks, Mrs. Gore was transferred from Trinity Mother Frances Hospital in Tyler to a local nursing home where she died almost three months later on March 10.

Mr. Gore admits there are more questions perhaps than answers concerning how his wife got CJD, but pointed out that she received 12 pints of blood during her December 1998 open heart surgery at a Houston hospital.

However, McFarlane said CJD is not thought to be transmitted through blood transfusion [There is a growing body of evidence that TSEs may indeed be transmitted via blood; see for example a recent review article in the Journal of Laboratory & Clinical Medicine "Blood infectivity and the prospects for a diagnostic screening test in Creutzfeldt-Jakob disease." 137(1):5-13, 2001 Jan.--BSE coordinator], saying instead it is believed to be transmitted through the brain, spinal fluid and the eyes.

Also, Mrs. Gore had a calf valve placed in her heart in 1979, Mr. Gore said.

"She had been carrying around bovine material for 20 years," Mack Gore said.

While admitting it's a far-out theory, Mr. Gore said perhaps the "prions" in his wife's calf valve got loose and infected her brain.

What seems to bother Mr. Gore the most, however, is that the U.S. government has steadfastly maintained this country has never had a case of mad cow disease. Maybe not, the retired mechanical engineer says, but that is nothing more than semantics in his mind.

"That's splitting hairs as far as I'm concerned," Mack Gore said. "It's stuff that needs to be ironed out and presented to the public."

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