PVCC Lynx: May 2005

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	Photo courtesy of the Schwan family
	Jeff Schwan was a member of three softball teams the summer before CJD took his life at 26. A brain biopsy revealed that an incurable "virus" had eaten holes in his brain.
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After my mother died of Creutzfeldt-Jakob disease, my father and I held a memorial for her in our backyard. It was the only thing we could do for her, so we put all our energy into it. The holidays came and went. My friends were very supportive. I had plenty of people to talk to. Everyone brought us food or sent flowers and cards.

In my head, I wrestled with my mother’s death and my own genetic possibilities if there were family connections. I had learned that another relative on her paternal side had also died of CJD. (The preliminary autopsy report said that the origin of my mother’s disease was “possibly sporadic” or “unknown.”)

Still, I didn’t think too much about mad cow disease until it hit the news that a cow in the U.S. had been suspected of bovine spongiform encephalopathy, or mad cow disease. I saw the report on TV and it felt like the air had been knocked out of me. I immediately went to Border’s and bought “Mad Cow USA” by Sheldon Rampton and John Stauber. I was hungry for information and went on the hunt for it.

I soon found a support group online where I met people who had been going through CJD hell for years. There are people who have been looking for answers for decades. They’ve given me answers and even helped me with advice on my day-to-day concerns like grieving and sleeping.

Together, survivors in the United States are fighting to make CJD a reportable death in all 50 states so that the disease can be tracked in this country. Money is needed for research. Families are angry, thinking the government is trying to destroy the evidence of an epidemic. In a two-year time period in which the American people have consumed 150 million cows, less than 300,000 of them have been tested for BSE.

There were so many stories like mine and plenty that were more hideous. Some CJD patients were older than age 60, which is common, but there have been young people who die of this too. Even 25-year-olds die of this disease.

These days, I get my strength from the other CJD families around the world. We all help each other every day. Over 500 of us are spread around the globe, from Minnesota to Italy; Phoenix to Edmonton, Canada. And those are just the ones we know about. I, unfortunately, did not find the group until after my mother died.

Irv Norfleet

I found Mary Norfleet, her husband and my mother shared the same doctor at Barrow Neurological Institute. When my mother was diagnosed with CJD, Dr. Russell Walker told me that she saw about two cases of CJD a year. She told me that one man with CJD had gotten lost at the zoo for hours, alerting his family that something was wrong. That man was Irv Norfleet. Mary says he simply wandered away from her and their grandchildren.

She says, “It took him a couple of hours to find the main entrance, find my cell phone number and have someone call me. The next day he admitted that he’d been having trouble remembering and reading. We went to the VA doctors and they diagnosed Alzheimer’s. But the disease was progressing so rapidly that I knew it was not that.”

Irv had trouble walking and didn’t see clearly; he saw a red haze. Mary says he couldn’t feed himself. He leaned to one side when he walked. He would stop in the middle of doing something and stare into space. His muscles twitched as he slept. After seeing many puzzled doctors, Irv ended up with Dr. Walker at BNI—just as my mother did. By the time Walker gave Mary her husband’s diagnosis, he was “pretty much in a coma.”

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'From the time he told us ... until he died was a little over three weeks'
— Mary Norfleet
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“We moved him to a hospice facility and he died four days later,” Mary says. “From the time he told us something was wrong until he died was a little over three weeks. I believe he was experiencing symptoms before that, but didn’t say anything.”

Irv died Nov. 19, 2002—the day after his 65th birthday.

Jeff Schwan

Jeanne White of Glendale lost her 26-year-old nephew Jeff Schwan to CJD. He showed up at his parents’ house on July 11, 2001 because he was having trouble remembering things and something was wrong with his speech. Schwan didn’t know what year it was or his last name. Six days after that, at the University of Michigan Hospital, he was having headaches and seizures. He woke up from a nap making what White calls “silly and loud noises.” Days after that, doctors induced him into a coma in an effort to try to stop the seizures. On August 11, the once athletic Schwan was given a brain biopsy that showed an incurable “virus” had eaten holes in his brain.

White arrived in Michigan to see her nephew on August 12, 2001. She broke down before she could even walk into his hospital room. From the doorway she could see her nephew’s body had turned to skin and bones. He had a tube coming out of his nose. Doctors told White that Schwan couldn’t see, hear or understand anything. She sang a favorite song to him and he smiled, prompting doctors to scramble to figure out why. His seizures continued and he was given more drugs.

By August 16, word leaked out there might be mad cow disease in the hospital. Creutzfeldt-Jakob disease typically affects people over age 50, but a variant form caused by BSE affects people in their teens and twenties. Schwan’s family went in and out of the hospital very carefully and without speaking of his condition. He died on Sept. 27, 2001. Tests eventually confirmed Jeff had the sporadic type of CJD—not the variant type that has killed many young people in the UK. The sporadic form is the most common. Current research says there is no link between BSE and sporadic CJD, but there is proof that Variant CJD is caused by BSE in tainted meat.

Schwan worked in electrical design and planned to return to school in order to complete his degree in electrical engineering. He had met a young woman from Hungary, who was visiting to find out if she and Schwan had a future together. Instead, she spent time at the hospital with him and his family and returned to Hungary after his funeral. He was on three softball teams the summer before his illness. His mother, Terry Schwan, says his personality was such that the party started once Jeff walked into the room.

Terry says, “I used to tease him that he could be an Abercrombie and Fitch model with his looks and build. He was an observer, mimic, funny and quick—mentally and physically. Love and loyalty to his family and friends was his strong point. His boss sang his praise. His friends came in droves when he was hospitalized, some flying in from out of state during that time and for his funeral. One evening at the hospital there were 35 people to visit him in neuro ICU. I had to bring them in by twos.”

At the same time that Americans were mourning the loss of Sept. 11, 2001, Terry was mourning the loss of her son. She says she was thinking she could not take much more of watching her son die. She also had funeral homes on her mind since some refuse to take people who have died from CJD.

Orlin Olsen

Shirley Olsen of Mesa lost both her husband and father-in-law to CJD. In 1988, she lost her daughter in a car accident and her father-in-law to CJD. The family business was farming and Olsen’s father-in-law was a butcher. Her husband started to show signs of CJD eight years after his father’s death. He was driving terribly, his arms would fly through the air uncontrollably and he even knocked himself out of bed at night. Olsen, who is a nurse, woke up to a scream one night. Her husband had one foot stuck in the toilet and was wedged between it and the shower. He ran into walls and fell. He hallucinated and said he saw rats on the wall. His vision was blurry. Nurses at Mesa Lutheran Hospital were afraid to touch him until Olsen explained that you couldn’t catch CJD by contact.

Olsen says, “I told the nurses, educate yourselves; there will be more.”

She tried to get her husband an autopsy, but says no one in the state of Arizona would touch him. Someone in California offered to do it, and they wanted his body packed in ice. But Olsen found out it was illegal to cross the border without being embalmed, and the medical examiner from California wouldn’t fly to Arizona to do it. Her husband died Sept. 5, 1996. No autopsy was performed.

The Fight Is On

All the survivors share the same lightning-fast loss. They all share a need for answers and look everywhere for them. They share information with one another, with their doctors, with congressmen and senators. Everyone in the group gives input as to how the CJD bracelets should look. They send articles from scientific and medical journals to one another. There are people in the support group from every walk of life and most know this disease better than doctors do. They keep up on the latest research and political issues. They are an emotional bunch, bitter and angry at what has happened to their loved ones.

They want CJD to be a reportable death in all 50 states so that the disease can be tracked in America. They want there to be more money for research. They have written their representatives because they found out the National Institutes of Health might be planning to destroy a collection of brains belonging to CJD victims. Ten of the brains in question may actually prove that people have died of Variant CJD, caused by eating contaminated meat, in America. Families are angry, thinking the government is trying to destroy the evidence of an epidemic.

Since I joined this group a few months ago, I have gotten to know people well. But lately, we’ve seen many new people join the group. Many of these have lost a loved one under age 50. I’ve noticed so many people lately who live in small towns and say they know of a few CJD deaths in their area, which blows the supposed odds of one in one million out of the water. That’s the statistic every doctor or textbook will throw out about the “rareness” of CJD.

It has been nice to find so many people like me with similar stories. I have found that no one else understands what it is like to go through all of this. But at the same time, it’s incredibly hard to realize just how many there are.

Mary says, “I guess most of all, what I want people to know is that CJD is much more common than health officials are telling the public. It’s often misdiagnosed and it’s occurring in younger and younger people. Support the CJD Foundation so they can find a cure.”