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Disease has family looking for answers
September 22, 2003 Spokesman Review (Spokane, WA) by Carla K. Johnson
Peter Putnam loses more verbal and physical skills each day. His family searches for answers, but won't know the truth until after Putnam's death, when his brain tissue will be sent to Case Western Reserve University for testing.
His mother, Jemie Turnley, believes her son still recognizes friends and understands their conversations and reminiscences. He still laughs at sitcoms on television, said his dad, John Turnley. But the once-athletic and handsome Putnam cannot speak or feed himself, and, frequently now, cannot walk unassisted. He may have only months left.
''One brother said if Peter had known this was going to happen to him, he would have stood in front of a semi," his mother said. Still, she would rather that he live, despite his decline. It would be better than seeing his chair empty.
CJD is a type of brain disease called spongiform encephalopathy. It has no cure and is fatal. Researchers believe it is caused by an abnormal infectious protein called a prion that marches through the brain, flattening other proteins and leaving brain matter with a spongelike appearance under the microscope.
There are several types of CJD. The best known is a new variant associated with eating infected beef. In the late 1990s, Great Britain destroyed millions of cattle to stop the spread of mad cow disease to humans in the new variant form of CJD.
There have been no known cases of variant CJD acquired in the United States. It's unlikely that Putnam is the first, said his Spokane neurologist, Dr. John Wurst.
''It would be irresponsible to put in print anything suggesting it's likely he got it from infected beef," Wurst said.
The U.S. beef industry and federal government have taken numerous steps to keep meat safe, including limiting the use of most rendered cattle parts in cattle feed. Putnam had not visited the United Kingdom, although he had been to Canada, Mexico and St. Thomas in the U.S. Virgin Islands.
He moved to Anchorage in early 2002 where he sold commercial insurance. He was not known to eat deer or elk, which can transmit a similar illness, called chronic wasting disease.
There are several other, less well-known, types of CJD, and Putnam's may be the sporadic type, in which abnormal prions in the brain begin to take over for no known reason. Sporadic CJD strikes one in a million people each year. Wurst, the Spokane neurologist, has seen the disease twice - once as a student doctor in Seattle, and again 11 years ago in Spokane.
It usually strikes older people, but cases in young people are not unknown.
Divorced with no children, Putnam kept in touch with many friends and usually started his day sending out e-mails to them. He graduated from East Valley High in 1986 and Washington State University in 1990.
His Sigma Nu fraternity brothers regularly visit and phone the cabin at Twin Lakes, where Putnam used to water ski and now sits looking out at the lake.
Recently, one fraternity brother called and asked that Putnam's mother hold the phone to Putnam's ear. He wanted to tell his old friend something important: ''I'm finally going to do it. You told me to ask her. We're getting married."
Friends flock to Putnam because he was a good friend to them, his mother said. She now spoon-feeds him and wipes drool from his chin like she did when he was a baby.
''No mother should have to go through this," she said. ''But it's taught me I have the most awesome family. Not one of the kids hangs up the phone without saying, 'I love you."'
Told there was no therapy or cure, Putnam's brothers began to read what they could on the Internet. Brother Tim Putnam wrote a six-page press release that stirred interest because of its headline: ''Mad cow disease in the Northwest may be the first U.S. case linked to the ingestion of meat."
But that goes too far, said Eileen Campbell, manager of Case Western's National Prion Disease Pathology Surveillance Center in Cleveland, Ohio. The center tries to obtain tissue samples for every case of prion disease in the United States and classify them.
''Our center has not diagnosed a variant case in the United States," Campbell said.
Tissue from a brain biopsy on Putnam was sent to Case Western, but tests were not conclusive, said Wurst, the Spokane neurologist.
What is a horrifying mystery to the family is a potential public relations nightmare for the beef industry. The National Cattlemen's Beef Association e-mailed a statement to The Spokesman-Review when word reached the group about this story.
''The beef industry and the U.S. government began taking aggressive steps in the late 1980s to prevent the introduction of this disease in the U.S.," the statement reads in part. ''A recent exhaustive, multi-year risk analysis by the Harvard University Center for Risk Assessment confirmed that the work to keep our nation BSE-free is working well." (BSE is bovine spongiform encephalopathy, the technical name for mad cow disease.)
The beef industry is quick to react to CJD news, said Sheldon Rampton, co-author of the 1997 book ''Mad Cow U.S.A."
''They've been very irresponsible about the way they've communicated to the public," Rampton said. ''They went around for a decade saying we didn't need to do anything to stop the feeding of rendered cattle back to cattle. Their spin on things has created confusion and a sense they are covering something up."
On the other hand, Rampton urged caution about linking Putnam's case to mad cow disease.
''There have been a number of cases where family members believe initially that their loved one's case is mad cow related, and later investigation revealed that was not the case," he said.
Putnam has been with his parents since January. That's when his employer in Anchorage, worried about Putnam's frequent memory loss and confusion, put him on a plane for home.
In the early weeks, when he still looked more like himself, Putnam packed and repacked his bag. He searched for his car and his car keys. He made lists of what he wanted to do when he got back to Anchorage, lists his mother would find crumpled in his pockets.
Lists of things most people take for granted.
''Car," he wrote.
''Home. Dog. Wife. Children."