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From: TSS ()
Subject: A light in the darkness, One family's journey through CJD
Date: October 23, 2005 at 7:11 am PST


SUNDAY OCTOBER 23, 2005 TWIN FALLS, IDAHO




Photo courtesy of Owen Bennett
Jo Ann Bennett was a healthy, active woman marketing her homemade Nature's Best Soap at local craft fairs before becoming ill last fall. She died in February shortly after being diagnosed with Creutzfeldt-Jakob disease.


A light in the darkness
One family's journey through CJD
By Sandy Miller
Times-News writer

TWIN FALLS -- She loved her lighthouses. Eight months after her death, a miniature of a lighthouse still greets visitors at her front door. Her lighthouse dishes are in their same places in her kitchen cabinets. A lighthouse lights the way in a painting in her living room.

"It was said several times that she was a lighthouse," said Owen Bennett, her husband of 47 years. "We went through the storm of CJD, but the light was still shining even then."

Jo Ann Bennett was 63 years old when she died in February after being diagnosed with Creutzfeldt-Jakob disease, a fatal brain-wasting disease carried by prions, an abnormal form of protein in the bloodstream. She would be the first of many. Eight other Idahoans have since died after being diagnosed with the disease, although it was determined two of those deaths were not caused by CJD.

The only way to absolutely confirm CJD is by testing brain tissue, according to the National Prion Disease Pathology Surveillance Center. Owen said his wife's brain tissue was not tested, but that her neurologist seemed certain CJD was the correct diagnosis.

CJD is a particularly cruel disease. In just four months, Owen watched his wife go from a vibrant woman with nonstop energy to bedridden. All he could do was comfort her as her brain launched a full-scale attack on her body. There is no cure for CJD.

For more than 35 years, the Bennetts grew seed beans and raised calves and goats on a farm south of Twin Falls. Jo Ann came from hearty stock. She could often be found behind the wheel of a beet truck, a load of kids and grandkids in tow. She was never one to complain about aches and pains. Once, she tore her rotator cuff in a stumble down the stairs and waited six months to get it operated on.

"I only heard her complain once," said her son, Don Bennett. "She said she wished my dad would tell her when he was bringing people home."

In spring 2003, the couple retired from farming and moved into Jo Ann's "dream house" on the north side of Twin Falls. Unfortunately, she would not get much time to enjoy it.

It was a year ago in November and Jo Ann was selling her homemade Nature's Best Soap at a craft fair inside the College of Southern Idaho's Expo Center. Jo Ann just didn't seem like herself.

"People thought something was wrong," said her daughter-in-law Terri Bennett. "Someone walked in and asked her a question and she just stared at them. You could tell she was looking for the words, but she couldn't find them."

Owen had been noticing changes, too. And Owen knew Jo Ann better than anybody. They'd been inseparable since they first laid eyes on each other more than a half century earlier at the old Freewill Baptist Church in Buhl. He was 14 and she was 12. A year later, they went on their first date to the Twin Falls Rodeo. Four years later, they married.

Now, after 47 years of marriage, Owen noticed Jo Ann was having difficulty concentrating. She sometimes stopped talking mid-sentence.

"She was beginning to lose her ability to put thoughts together," he said.

Owen worried it might be the beginning of Alzheimer's. After all, Jo Ann's mother had been diagnosed with Alzheimer's disease. And her father was suffering from dementia when he died the previous May.

Her family knew something was wrong, but nothing could prepare them for what would happen over the next few months, the last months of Jo Ann's life.

Steady decline

Owen sits in an easy chair in the living room of his wife's dream house. He's holding the "Scenes of Serenity" calendar on which he kept detailed records of his wife's journey through CJD. The calendar features pictures of lighthouses.

"In the first part of November, she really started slipping," Owen said.

After the craft show, Terri and Don took Jo Ann to see her family doctor. Jo Ann told the doctor she could no longer smile.

"I realized that's why she looked so sad," Terri said.

Her doctor ordered an MRI. Terri was sitting with Jo Ann in the waiting room when Jo Ann turned to her and said, "I can't play the piano."

Jo Ann played the piano every Sunday at the Airport Road Freewill Baptist Church, which Owen helped build in the mid-1960s. She also taught Sunday school and was the church's treasurer.

Her family watched as her condition steadily worsened. Owen noted on the calendar what happened on Nov. 23, the day Don and Terri's daughter and son-in-law were baptized at a Baptist church in Boise. Owen said seeing her grandchild baptized normally would have been one of the happiest moments of Jo Ann's life. But Jo Ann no longer seemed like Jo Ann. She just sat silent in the pew, holding her head in her hands. After the service, she ran from the church.

Holidays were normally happy days for the Bennett family. But on this Thanksgiving, Jo Ann seemed to be in her own little world.

"She was in the recliner and didn't talk to anybody," Terri said.

Still, Jo Ann was able to communicate. She even began Christmas shopping for her family, which had grown to seven great-grandchildren. Still, she knew something was terribly wrong with her. Jo Ann even put the names of her grandchildren on her favorite pieces of jewelry.

But whatever it was that was attacking her still didn't have a name. Not yet.

The family gathered on Christmas to open gifts. Some family members couldn't be there so their gifts remained under the tree. A few days after Christmas, Terri walked into Jo Ann's house to find her opening the gifts and playing with them.

"She was like a little kid who couldn't wait for Christmas," Terri said.

Jo Ann was slipping further and further away. On Jan. 3, Owen's sister came and picked up his 93-year-old mother, who had been living with Owen and Jo Ann for 30 years.

"That's when the screaming started," Terri said. Jo Ann would scream out and cry for no reason. One time she screamed for two days, Terri said. Owen called Terri in tears. He didn't know what to do.

A couple of days later, Jo Ann was in a wheelchair. Owen took her to the Social Security office to sign her name on an application for disability.

"She printed it like she was in first grade," Owen said.

The next day, Don and Terri took Jo Ann to a doctor who specialized in physical medicine and rehabilitation. After a full day of testing, Don and Terri treated Jo Ann to dinner at a Mexican restaurant.

"She was acting very childlike and laughing," Don remembered.

The family moved Owen's mother back into Owen and Jo Ann's house and Jo Ann's spirits seemed to pick up. When they went to a wedding a week later, she was even on her feet for a while. But her memory was going fast. She didn't even recognize her great-grandchildren. That's when Owen began thinking the worst.

"I realized this was going to be fatal," Owen said. "She was going downhill so fast."

But this thing, this unforgiving disease attacking her brain, still didn't have a name. By Jan. 22, Jo Ann was losing control of her body. Her arms and legs would jerk uncontrollably. Terri said sometimes the jerking would throw Jo Ann out of her wheelchair. The family made an appointment for Jo Ann to see a neurologist who did an EEG, a test to measure Jo Ann's brain waves.

"I had to hold her head up," Owen said. "He mentioned CJD was a possibility."

She also had another MRI and a CT scan.

A week later, the neurologist called Owen. The disease attacking Jo Ann's brain finally had a name. It was CJD and it was fatal.

Owen called a local hospice organization that brought in a hospital bed and put it in the living room where Jo Ann could be surrounded by her family and her beloved lighthouses. She began to lose her ability to swallow and could, at best, only get down a few bites of yogurt or mashed potatoes. She would sometimes choke on her food.

"I was complaining to the Lord, 'This is too heavy a burden. I can't handle it,'" Owen said through tears. A spiritual man, he said he heard a silent message back that his burden would soon be gone.

Jo Ann died on Feb. 21. Since then, the family has been interviewed by South Central District Health, which is trying to figure out if any of the suspected CJD victims had anything in common. Owen also has been interviewed by newspaper and television reporters.

The day before Jo Ann died, the family gathered for dinner and to select photos to use in Jo Ann's service. Jo Ann had lost her eyesight by then. Her family thinks she stuck around long enough for that last get-together.

Today, there is still a big piece missing from the Bennett family.

"She was the matriarch," Don said. "She was a lighthouse for others."

Times-News writer Sandy Miller can be reached at 735-3264 or by e-mail at smiller@magicvalley.com.

Idaho CJD cluster

* Since January, the Idaho Department of Health and Welfare has received nine reports of people -- seven women and two men -- diagnosed with Creutzfeldt-Jakob disease, a fatal brain-wasting disease carried by prions, an abnormal form of protein in the bloodstream. Prions cause folding of normal protein in the brain, leading to brain damage. Symptoms include dementia and other neurological signs. Its victims usually die within four or five months after onset of the disease, according to the Centers for Disease Control and Prevention.

* The cases include four women from Twin Falls County, a woman from Minidoka County, a woman from Benewah County in northern Idaho, a woman from Bear Lake County located in the southern corner of Idaho on the Utah border, a man from Elmore County and a man from Caribou County in southeastern Idaho.

* Of the nine people in Idaho who have died, five had autopsies and their brain tissue was sent to the National Prion Disease Pathology Surveillance Center at Cleveland's Case Western Reserve University.

* Of those five, three women -- two women from Twin Falls County and the woman from Benewah County -- tested positive for a prion disease. Final results on one of them showed she died of sporadic CJD and not the variant of CJD that is caused by eating meat from a cow with bovine spongiform encephalopathy, commonly known as mad cow disease. Health officials are still waiting for the final results on the other two women to determine just what kind of prion disease they died from, said Tom Shanahan, spokesman for the Idaho Department of Health and Welfare.

* Two people, including the Elmore County man and a Twin Falls woman, tested negative for a prion disease.

* Autopsies were not performed on the other four suspected CJD victims. However, state health officials are sending their medical records to a neurologist at the CDC for further study, Shanahan said.

* The number of cases is highly unusual. Normally, there is only one case of CJD per million people a year. Between 1984 and 2004, Idaho averaged 1.2 cases a year, Shanahan said. He said there was one year during that period when Idaho had three cases.

* Because of their ages -- all of the victims except one were over the age of 60 -- health officials suspect they died of sporadic CJD, and not the variant of CJD. However, the only way to absolutely confirm CJD is by testing brain tissue, according to the National Prion Disease Pathology Surveillance Center.

Story published at magicvalley.com on Sunday, October 23, 2005

http://www.magicvalley.com/articles/2005/10/23/news_topstory/news_topstory.1.txt


TSS



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