Rare brain-wasting disease fells soldier

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Rare brain-wasting disease fells soldier

 

 

By LEON ALLIGOOD

Staff Writer

 

 

KARNACK, Texas — Under a blue November sky, in the piney woods of East Texas,

near the western finger of Caddo Lake, a soldier lies dying.

 

Staff Sgt. James Alford, who until April called Fort Campbell home, appears to

sleep. His chest rises and falls. Sometimes his eyes blink open, and he smiles.

But make no mistake, the monster within, the strange, silent disease that has

felled him, remains in control.

 

The unyielding malady is Creutzfeldt-Jakob disease, a rare and fatal brain

disorder that leads to progressive dementia and neuromuscular deficits. It

assaults the brain in a manner similar to what happens to cattle infected with

''mad cow'' disease.

 

First, the disease robbed Alford of his dignity and the career he had craved

since boyhood. Not knowing the monster was consuming his brain and central

nervous system, his superiors in the 2nd Battalion of the Army's 5th Special

Forces Group berated and demoted him for a pattern of dereliction that included

losing equipment, going AWOL and repeatedly failing to carry out commands. He

was bucked down a rank and was about to be stripped of his Special Forces

uniform patch, having been shipped home early from Iraq.

 

Once the diagnosis was made, the Army made amends. Rank and pay were restored.

But Alford's parents and wife wonder why no one questioned how a soldier who had

earned a Bronze Star in Afghanistan in 2002 could become, 18 months later, the

foul-up of the unit. They want answers, and apologies.

 

Today, the monster is slowly killing Alford, who turned 25 one week ago. It will

succeed, doctors say.

 

He receives liquid nourishment through a feeding tube. A catheter directs urine

from his bladder. He is bathed with a washcloth in bed. The Green Beret, a

member of the brotherhood, the Army's toughest of the tough, is a shadow of his

former self.

 

''We just take it a day at a time. Some days, it's a minute at a time,'' says

Gail Alford, his mother, who worked as a licensed vocational nurse at a nearby

hospital before her son — Jamie, to her — became ill. She quit to care for her

own at home.

 

The woman, also dark-haired, reaches to adjust a soft doll in her son's right

hand, forming his fingers into a grip around a purple octopus. The other hand

grips a toy bulldog. For 12½ years she worked in the pediatric unit, caring for

terminally ill children. The soft dolls, she learned, were a comfort, and the

flexing stalled atrophy.

 

Gail rubs her son's hand.

 

''I never thought it would be this way,'' she says.

 

Summons to Tennessee

 

Gail Alford hung up the phone and turned to her husband, John, and Billy, John's

son from a previous marriage. It was April, and Jamie's neighbor had called to

say that someone needed to come see about Jamie.

 

That their son was in the United States was a surprise to the Alfords, who

thought he was still in Iraq.

 

When Gail talked to her son, she thought she understood why the neighbor was

concerned. His speech was slurred, and he repeated himself.

 

''I told his dad and Billy that I thought Jamie had had a stroke,'' she

recalled, sitting at a picnic table beneath a canopy of oaks whose leaves hadn't

shed yet.

 

Taking time only to pack a few clothes, John and Gail departed within the hour

on a 600-mile drive to Big Rock, Tenn., a small Stewart County community where

the staff sergeant and his wife, Amber, also a soldier at Fort Campbell and also

deployed to Iraq, rented a house.

 

It was after midnight on April 27 when they arrived. Jamie's right hand

trembled. He stuttered and could not string together complete sentences and had

lost weight, about 30 pounds.

 

Neighbors, who had known the young couple well, told the family that Jamie had

been spotted two days earlier having difficulty unlocking the door.

 

Stephanie Herndon, who lived nearby, assisted in getting electrical power turned

back on for the soldier. ''He couldn't really talk clearly. He could say some

things but not others. He was very nervous and shaky.''

 

Usually when the staff sergeant would return from a mission, he would tell her

it was ''no big deal,'' Herndon noted.

 

''When he came back this time, he said it was bad, really bad.''

 

Jamie was seen sitting in his pickup for long periods, as if he had forgotten

how to turn the ignition.

 

Another neighbor, Larry Mathis, recalled when the confused soldier came to his

house.

 

''He didn't even know how to use a fork,'' Mathis said. ''We all wondered what

in the world had happened.''

 

The Alfords wondered, too, as they began taking him from doctor to doctor. They

were told by 5th Special Forces officers that Jamie had been examined by a

physician and a psychiatrist while deployed and that nothing was found wrong. On

the commercial flight return trip, the plane had to land unexpectedly because

Jamie became violently ill, vomiting and complaining of pain. The Alfords were

told their son was examined but that no diagnosis was made.

 

However, on April 29, the staff sergeant was admitted to Blanchfield Army

Community Hospital after a thorough neurological exam that included an MRI and a

CT-scan of his brain. Doctors still didn't know what was wrong but knew the

problem was severe. When asked when he could return to duty, the answer was

never.

 

The next day, the soldier was transferred to the Veterans Affairs Medical Center

in Nashville for more testing. There, Dr. Steve Williams, an infectious diseases

specialist at Vanderbilt University Medical Center, was referred to the case.

 

Additional testing led Williams to diagnose encephelopathy, a degradation of the

brain whose symptoms had been ongoing for the past 12 to 18 months.

 

While Jamie was hospitalized at the VA, Spec. Amber Alford arrived from Iraq to

find her soldier-husband of three and a half years in terrible shape.

 

''I had gotten a completely messed-up message that my husband had head

injuries,'' she said. ''They gave me a number to call at the VA hospital. I

thought he was somewhere in Iraq.''

 

Amber was sent home immediately. When she got to Nashville, she took a cab to

the hospital.

 

''I wasn't prepared for how I found him,'' she said. ''He had always been so

healthy and active. He was a marathon runner. He was the epitome of health.''

 

In the hospital bed was a sick man, thin and vulnerable. ''He went from being

cocky to being afraid. We were all afraid,'' she said.

 

Williams told the family that he suspected Creutzfeldt-Jakob disease, but that a

brain biopsy, a risky procedure, would be required to be sure.

 

Gail Alford, with her medical training, understood the risk. ''What choice did

we have? We had to know,'' she said.

 

That procedure was successfully completed a month later at Fort Sam Houston in

San Antonio. A hole was drilled into a small section of Jamie's brain, and

tissue was tested for the level of a protein called 14-3-3, a known indicator of

CJD when found in high levels.

 

The results were conclusive.

 

The monster that will take their son and husband had a name.

 

Effects of a disease

 

The staff sergeant has sporadic CJD, a term that means no one knows, and

probably will ever know, how he contracted the disease. According to the Centers

for Disease Control and Prevention, the average annual mortality from CJD in the

United States is about one per million people.

 

However, when age is considered — most cases occur in the elderly — the odds are

even more rare: Only about one CJD death in 100 million people occurs annually

in persons 30 years old or younger.

 

The Alfords speculate that the soldier, who was well-traveled in the Special

Forces, could have eaten contaminated beef. He has been to England, where more

than 125 humans have gotten the disease by eating beef that had been fed

products rendered from scrapie-infected sheep. Scrapie is a form of

encephelopathy found in sheep.

 

There are also questions about vaccines that manufacturers have admitted were

made using fetal calf serum in countries with known cases of mad cow disease.

Among the questionable vaccines produced in this manner were those for anthrax

and diphtheria, both of which the soldier received. No cases of such a

transmission have been identified, however, according to the federal Food and

Drug Administration.

 

Staff Sgt. Alford, while he could still speak, offered another scenario. While

in the Middle Eastern country of Oman, in 2001, he partook of a sheep's brain at

the invitation of locals.

 

''That's what he told us at the VA hospital,'' Amber said.

 

While researchers have linked the disease to cattle that have eaten sheep

byproducts, there is no evidence of a direct transfer from sheep to humans, said

Florence Kranitz, president of the Creutzfeldt-Jakob Disease Foundation in

Akron, Ohio.

 

CJD tackles its victims with cruel form, changing their personalities.

Forgetfulness is an early symptom, followed by memory loss, wide mood swings,

difficulty with speech, lack of coordination and, eventually, coma. Death

follows as vital organs fail.

 

Looking back, the Alfords realize they had seen hints of change.

 

In August 2002, Jamie became increasingly forgetful, said Amber, who was away at

a training school in California during much of the time that the disease began

manifesting itself.

 

In December of the same year, he faced a military hearing for going AWOL. While

taking a class at Camp Dawson, W.Va., in September, Amber said, her husband told

her that he quit the class because of headaches and backaches and returned to

Fort Campbell. However, the Army said he submitted travel vouchers that

indicated he stayed for the class.

 

Jamie also lost an assault vest and a body armor set that the Army had issued

him, valued at about $600.

 

On Dec. 10, 2002, he was demoted to sergeant. Jamie dropped from the Army's E-6

pay classification to E-5.

 

Eleven days later, he forgot the third anniversary of his marriage.

 

''Jamie never forgot things like that. I thought, at the least, he could say,

'Happy anniversary, babe.' But he didn't. I reminded him,'' Amber said.

 

''We fought a lot. He had really bad mood swings. I thought it was from the

stress of his going AWOL and being busted down to E-5.''

 

Jamie's father, John, also attributed the stumbles to stress. A retired command

sergeant major, with 34 years of active duty, the elder Alford acknowledged that

his son not only had made rank fast, but was one of the youngest Special Forces

soldiers in the group.

 

He was adjusting to ''playing with the big boys,'' John remembered thinking.

 

Last December, Jamie and Amber went to Texas for a visit, the last before both

would be deployed. As usual, Jamie offered to do chores around the place, and

the father asked him to help him start an auxiliary generator.

 

''It started once but wouldn't start again. I was making suggestions, and he got

angry. He walked around out here, mad. He said, 'I'm not stupid. I know how to

crank a generator,' '' the father remembered.

 

''That was just not Jamie, that just wasn't like him. I told his mama, 'He's

just learning to play with the big boys.' ''

 

When he left for Iraq with his unit earlier this year, the effects of CJD only

intensified.

 

The soldier's forgetfulness escalated to the point that in February he was

handed a written order commanding him to ''carry a note pad in order to write

instructions down to insure that they are not forgotten.''

 

Yet, the problems worsened. He failed at least four times to appear for duty.

Errands that should have taken 15 minutes took hours. He was charged with

stealing another soldier's gas mask.

 

A memorandum dated April 10 from Lt. Col. Christopher E. Conner informed Sgt.

Alford that Conner was initiating action to revoke the young soldier's Special

Forces patch. ''Your conduct is inconsistent with the integrity and

professionalism required'' of a Green Beret, Conner wrote.

 

A week later, Jamie was flying home, fully disgraced, extremely confused and

very ill.

 

Did his best

 

According to Williams, the Vanderbilt physician who first suspected CJD, the

young soldier did his best to hide the effects of the disease for as long as he

could.

 

''He was very resourceful. When I asked him his name, he would look at his name

tag on his wrist. When I asked him what floor we were on, he would look out the

window and count the floors. He wanted to please,'' the doctor said.

 

But the monster overpowered him.

 

John Alford thinks he knows what happened in Iraq. ''He would leave to go

somewhere and couldn't find his way back. He was too proud to say, 'I can't do

this.' ''

 

Amber Alford said she thought the erratic behavior that spoiled her husband's

military record snowballed in Iraq in his superiors' eyes. ''Anything that he

did wrong, they were going to jump on it. They refused to see that he was

actually sick,'' she said.

 

Gail Alford, his mother, is most angry that 5th Special Forces officers said

Army doctors in Iraq found nothing wrong with him, implying that he was ''faking

it.''

 

''It would not take a medical expert to know that something was drastically

wrong with Jamie. All they did was demote him and tell him he was stupid,'' the

mother said.

 

In Afghanistan, she said, her son had been cited for ''exemplary performance.''

In a narrative recommending Jamie for the Bronze Star, his unit commander

praised Jamie's organizational skills. By the time the war in Iraq had begun,

his superiors' opinion had changed.

 

''The real question we want to know the answer to is, why nobody questioned how

a soldier went from walking on water to all of a sudden couldn't do anything

right. How does that happen and no one seems to notice that something is

wrong?''

 

The best answer they have received was contained in a letter from Lt. Col. Johan

C. Haraldsen of Fort Campbell to U.S. Rep. Max Sandlin of Marshall, Texas.

Sandlin's office had made inquiries for the Alfords.

 

''The 5th SFG (A) would like to express its deepest concern to Sergeant Alford

and his family. His disease was not known prior to or during his UCMJ (Uniform

Code of Military Justice) proceedings. All actions taken by the 5th SFG (A)

involving Sergeant Alford were appropriate based on the best information

available.''

 

The public affairs office of the Army's Special Operations Command, based at

Fort Bragg, N.C., did not respond to a phone message and an e-mail requesting

comment for this story.

 

A time of waiting

 

In mid-September, four months after the CJD diagnosis was confirmed, the Alfords

were notified that Jamie's rank was restored to staff sergeant, retroactive to

the date it was taken from him.

 

As though it never happened.

 

The family is grateful, but they continue to fight. The Army has given Jamie

100% disability and intends to medically retire him. The family wants the Army

to keep him on active duty for economic reasons, so 100% of the medical costs

will be paid for by the service.

 

But they also are doing it just for the principle of the matter.

 

''He's an injured soldier, just as much as if he had been shot in battle,'' John

Alford said.

 

A hearing has been set for January, if Jamie lasts that long.

 

Rank and file members of Staff Sgt. Alford's unit call to check on him each

week. Several were contacted for this story, but none would agree to speak for

publication because of orders not to talk to the media. They remembered Jamie as

a good soldier and said he did not deserve the ignoble fate awaiting him.

 

Each day, the monster's tenure takes a little piece of him.

 

Gail pours a portion of Ensure, a nutritional supplement, through a stomach

tube. She, John and Amber frequently adjust Jamie's position to prevent

bedsores.

 

John talks on the phone to anyone who will listen to the story of his son.

 

Amber stands by her man, rubbing his cheeks, hoping for a hint of life.

 

In Karnack, Texas, a soldier lies dying.

 

Disease caused by bad proteins that leave spongy holes in the brain

 

Creutzfeldt-Jakob disease is a rare, fatal brain disorder.

 

According to the Creutzfeldt-Jakob Disease Foundation, anyone can be afflicted

with the disease, which occurs at the annual rate of one death per 1 million

people. For people younger than 30, the rate is one death per 100 million.

 

Once blamed on a virus, CJD is now thought to be the fault of a totally

different kind of disease-spreading agent, a ''prion.''

 

Prions are proteins. There are harmless prions and bad ones. ''The infectious

form takes a different folded shape than the normal protein,'' the National

Institute of Neurological Disorders and Stroke reports on its Web site.

 

Bad prions appear to help convert good ones to the harmful form, which leave

spongy holes in the brain.

 

CJD has no cure and no real treatment, although drugs such as painkillers can be

administered to relieve suffering, the institute said.

 

Transmission occurs in one of these methods:

 

• The most common kind is sporadic CJD, in which there is no known infection

source and no incidence of the disease in prior generations of the patient's

family, the foundation notes. Life expectancy is often less than a year from the

onset of symptoms.

 

• Inherited CJD occurs in about 10% to 15% of cases. Usually, the disease begins

earlier and lasts longer than sporadic CJD.

 

• According to the foundation, the disease is not contagious but can be passed

to others through contact with brain tissue or cerebrospinal fluid, putting

medical workers on notice.

 

Some cases of the disease have been transmitted by tainted human matter or

surgical instruments. Such transmissions, called ''iatrogenic'' cases, have

occurred during corneal transplants and injection of human growth hormones

collected from the pituitary glands of cadavers.

 

Contaminated surgical instruments also have passed on the disease. Consequently,

hospitals destroy surgical instruments used on patients with CJD.

 

• In Britain, scientists have linked consumption of meat from cattle suffering

from ''mad cow'' disease to the onset of CJD.

 

The name ''mad cow'' is a slang term for a disease formally called bovine

spongiform encephalopathy. ''Spongiform'' refers to the holes left in the cow's

brain.

 

Britons who watched the erratic, desperate behavior of affected cattle called

the illness ''mad cow'' disease because the creatures appeared to be crazy.

 

According to the foundation, ''mad cow'' was discovered in 1986 and blamed on

cattle having been fed contaminated meat and bone meal from scrapie-infected

sheep. Scrapie is the sheep form of the disease that affects cattle.

 

In 1996, British scientists indicated a link between ''mad cow'' and a new

variant of CJD that primarily affects younger people. More than 100 cases of the

variant CJD have been reported in Britain but none in the United States.

 

 

 

Leon Alligood covers the state for The Tennessean. He can be reached at

lalligood or 259-8279.

 

Copyright 2003 The Tennessean

 

 

 

 

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