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From: TSS (216-119-129-58.ipset9.wt.net)
Subject: Recent deaths linked to mysterious brain disease baffles family
Date: October 24, 2004 at 1:32 pm PST

Recent deaths linked to mysterious brain disease baffles family

By ALICIA CHANG
Associated Press Writer

October 24, 2004, 12:12 PM EDT

KINGSTON, N.Y. -- A few months before Richard Tobey died, his mind
suddenly started to deteriorate. The man who read The New York Times
cover to cover every Sunday inexplicably had trouble putting two words
together.

He forgot how to use the VCR even though he had taped all his favorite
shows in the past. Sometimes he remembered things that never happened
like performing synchronized swimming with a friend as a young boy.


Doctors thought Tobey had a bad case of sleep apnea, hooked him up to a
sleep machine and prescribed medicine. But when his symptoms worsened,
he was checked into the hospital where a biopsy revealed he had
Creutzfeldt-Jakob disease, a rare and fatal brain-destroying disorder
that strikes one in a million people worldwide.

"I knew there was no cure for it," said Tobey's wife, Barbara. "It was a
death sentence."

Tobey died on Oct. 9 at age 59, nearly two months after he was
diagnosed. By that time, unconfirmed reports had been circulating that
as many as five people in the mid-Hudson Valley region were suspected of
dying from the disease.

State health officials launched an investigation into the mysterious
group of deaths, and reported last week that they found nothing unusual.

Of the five suspected deaths, three were confirmed to be CJD-related.
One case was ruled out after testing by the National Prion Disease
Pathology Surveillance Center in Ohio. Another case was inconclusive
because no autopsy was ever done.

Although two of the confirmed deaths occurred in Ulster County (the
third was in neighboring Dutchess County), health officials noted no
unusual pattern since the deaths were spread out over a two-year period.
The state refused to identify the CJD victims, citing patient
confidentiality laws.

New York state has an average of 20 CJD deaths a year. Health officials
are still trying to determine whether there is a common thread among the
three confirmed cases.

Creutzfeldt-Jakob disease became a hot-button public health issue in
recent years because it has been linked to eating beef tainted with mad
cow disease. None of the New York deaths has been identified as mad
cow-related.

Barbara Tobey, who buried her husband in a private funeral last week,
remains puzzled about his death. She is perplexed how her husband, who
dreamed of buying a boat to go bass fishing when he retired next year,
went into such a rapid mental decline without any warning.

The results of the state probe only added to Barbara Tobey's confusion
since her husband experienced similar symptoms as Coleen Staccio, a
46-year-old Kingston woman whose initial CJD diagnosis was later ruled out.

Family members said Staccio, who died on Aug. 28, was initially
diagnosed as having CJD and her death certificate listed the disease as
the immediate cause of death. But last week, her family received a
report from the Ohio testing center that cast doubt on the diagnosis.

The report said Staccio did not die from CJD. It also did not say what
might have killed her.

"We were really devastated because she had every possible symptom," said
Staccio's father, Don Genther. "We just want to have closure."

The more common type of Creutzfeldt-Jakob disease, known as classic CJD,
is responsible for about one in 10,000 U.S. deaths each year, and its
cause is unknown 85 percent of the time.

Only about 150 cases of the human disease linked to mad cow, known as
"variant" CJD, have been counted worldwide and the vast majority of
those were in the United Kingdom. In the United States, there is only
one known case of variant CJD _ a Florida woman who died in June after
eating contaminated beef more than a decade ago in England.

Both forms of CJD are believed to involve the unexplained mutation of
proteins in the brain called prions.

Tobey's downward spiral began in late August when he became lethargic
and had trouble swallowing. But Barbara Tobey was not alarmed, thinking
it had something to do with the medication doctors gave him for his
sleep apnea. But she "totally lost it" when she came home from work on
her lunch break one day and found that her husband had put peanuts in
the freezer because he wanted them cold. She knew then something was
terribly wrong.

Tobey was admitted to Benedictine Hospital in Kingston and was
transferred to Mount Sinai Medical Center in New York City where a brain
biopsy showed he tested positive for CJD, according to his family.

Barbara Tobey stayed by her husband's bedside the entire time and kept a
journal, scribbling every detail about her interactions with doctors so
her husband could read about it when he recovered.

_____

On the Net:

CDC page on CJD: http://www.cdc.gov/ncidod/diseases/cjd/bse_cjd_qa.htm

CJD Foundation: http://www.cjdfoundation.org

Copyright © 2004, The Associated Press

http://www.newsday.com/news/local/wire/ny-bc-ny--braindiseasedeath1024oct24,0,5185660.story?coll=ny-ap-regional-wire

TSS



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