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A soldier's tale: military misdiagnosis
October 27, 2003 Dallas Morning News By NANCY BARR CANSON
Dallas Morning News, Monday, October 27, 2003
By NANCY BARR CANSON / Special Contributor to The Dallas Morning News
KARNACK, Texas - Staff Sgt. James Alford can't talk. He doesn't recognize his wife. His head shakes, his hands tremble.
He is agitated, restless, diapered and helpless, requiring round-the-clock care from his family. Unable to coordinate his fingers and hands, the former marathon runner can still walk, with assistance, and his daily ritual is to unsteadily "walk the floor," as his wife, Army Spec. Amber Alford, describes it.
In April, the Green Beret and Bronze Star recipient was sent home from Iraq by the Army. But it wasn't because he badly needed medical care.
"They sent him home to be court-martialed," said his mother, Gail Alford, a former Army nurse. "They wanted to strip him of his Special Forces tab. They wanted him out of the Army."
Army officials say they did not realize the 24-year-old soldier's increasingly erratic behavior was an early symptom of the difficult-to-diagnose Creutzfeldt-Jakob disease. CJD is a fatal, degenerative brain disorder that attacks the human brain in the same way that "mad cow" disease attacks cattle.
Staff Sgt. Alford was disciplined and demoted. Although the Army has restored his rank and corrected what it admits was a mistake, the Alfords - a family in which many members have served in the armed forces - question how this could have happened.
"I don't blame the Army for this disease," said his father, retired Army Command Sgt. Maj. John Alford, who was in the service 34 years. "I blame them for how they treated my son. They treated him like yesterday's garbage. They reduced his rank. They called him an idiot, called him stupid - this is a wounded soldier. It's no different than if he had taken a bullet to the brain."
The family has asked for and received acknowledgement that commanders in the 5th Special Forces Group erred.
"It's a terrible thing that happened," said Maj. Robert E. Gowan, public affairs officer for the Special Forces. "Everyone is deeply sorry for Sergeant Alford and his family. I think personal apologies, apologies that really mean something, will happen in time."
During his first six years in the Army, Staff Sgt. Alford was ranked an "excellent" soldier in every evaluation. He was awarded two Army Commendation medals, five Army Achievement medals, an Army Good Conduct Medal, numerous division ribbons and, in May 2002, the Bronze Star for "peerless expertise" in Afghanistan.
But four months later, changes in his behavior were noted. He went from being lauded for his "exceptionally meritorious service," "gallant conduct" and "incisive competence" to being called an irresponsible failure. In September 2002, he was disciplined for losing his assault vest and other military items. He was AWOL for several days from his post in Fort Campbell, Ky., and later demoted from staff sergeant to sergeant.
"In retrospect, when he got back from Afghanistan, there were signs," his mother said. "But we thought it was combat stress. We didn't know what it was."
No one knew that the changes in Staff Sgt. Alford's personality - forgetfulness and impaired judgment - were early symptoms of CJD.
Staff Sgt. Alford's wife, who was working with Army intelligence before her husband's illness, was training in California during this period, and his parents saw him only briefly at Christmas before he was deployed to Kuwait in January.
In Kuwait, as his condition worsened, his conduct became more erratic. He received a written order to carry a note pad "to write instructions down to ensure they are not forgotten." His records show he was placed on probation, accused of "dereliction of duty" and "larceny," of losing his protective mask, stealing another soldier's mask, failing to report for duty four times and lying to superiors.
His commander wrote on April 10 that he would initiate action to revoke Staff Sgt. Alford's Special Forces designation.
"Your conduct is inconsistent with the integrity and professionalism required by a Special Forces soldier," wrote Lt. Col. Christopher E. Conner of the 2nd Battalion, 5th Special Forces Group Headquarters in Kuwait. "I do not believe you are suitable for further Special Forces duty." The Alfords were later told that Staff Sgt. Alford had been seen by a doctor in Kuwait, who reportedly said nothing was wrong with him. A psychiatrist in Kuwait reportedly said that he was "faking it."
"Jamie was a good soldier," said his mother, who has left her job to care for her son. "When all this started happening, anyone should have known he was sick."
The cause of Staff Sgt. Alford's disease, diagnosed as "sporadic" CJD, is unknown.
CJD is a fatal degenerative brain disease in which early symptoms of behavioral changes and memory loss lead to severe mental impairment, dementia, loss of coordination, involuntary jerking movements, loss of speech, loss of vision, coma and death. Sporadic CJD is said to occur spontaneously, while new variant CJD is caused by eating beef contaminated with mad cow disease.
Sporadic CJD usually affects elderly patients, who often die within six months of the onset of symptoms. The duration of new variant CJD symptoms is often 18 months or more, and the median age of death is 28.
Staff Sgt. Alford showed clinical symptoms of new variant CJD, but his brain pathology was consistent with sporadic CJD. The Alfords suspect he might have contracted the disease by eating contaminated beef somewhere. During the past six years, he was deployed to Iraq, Kuwait, Jordan, Oman, Uzbekistan, Afghanistan, Thailand, France and England.
But they also see another possibility.
Staff Sgt. Alford told his doctors and his family that he ate sheep's brain when serving in Oman two years ago.
"As a Green Beret, he lived among the people," said his wife, Spec. Alford. "He said the locals served him the head of a sheep. It was considered an honor."
But while experts say cattle in Great Britain contracted mad cow disease from eating scrapie-infected sheep parts, they don't believe the disease is transmissible from sheep to people - no human has been proved to have contracted "mad sheep disease."
It's also theoretically possible that the soldier was given a contaminated vaccine.
In 2001, certain vaccine manufacturers admitted that they were using fetal calf serum and other materials from cattle raised in countries at high risk for mad cow disease, in spite of years of warnings from the Food and Drug Administration. The vaccines include those to prevent polio, diphtheria, tetanus and anthrax.
"Jamie was given all those," his father said.
No one has been known to have contracted the disease from a contaminated vaccine, and the FDA puts the odds of a vaccine being tainted with mad cow disease at 1 in 40 million doses.
But the odds of Staff Sgt. Alford getting CJD "spontaneously" are one in 100 million, according to the Centers for Disease Control and Prevention.
His family realizes that the cause of his disease is likely to remain a mystery.
Now, in the final months of his illness, Jamie is fed intravenously and sedated to help him sleep. He stares blankly and doesn't recognize his family. His wife, brother, parents and grandparents help him in his walking ritual.
"We walk the floor," his wife said. "I hold onto him so he won't fall down. We just walk across the living room and back and forth. He'll do that for hours and hours. It's like he can't be still."
The family knows it is only a matter of days or weeks before he may go blind and lapse into a coma.
He is expected to die before Christmas.
Soldier sent home
On April 22, Staff Sgt. Alford was sent home to Big Rock, Tenn., near his Army post at Fort Campbell.
"His hands were shaking," said his neighbor Justin Hawkins, 23. "He couldn't turn his keys. He wasn't able to talk right. Something was really wrong with him, but we didn't know what. He just seemed really shook up and frightened."
The utilities were disconnected. Mr. Hawkins said he unlocked the house and called the power company. His mother, Beverly Hawkins, contacted the Alfords in Texas on April 26.
Neither they nor their daughter-in-law had had any communication with Staff Sgt. Alford for months.
"I had a 24-year-old son I thought was fighting a war in Iraq, and I find out from his neighbor that he's sick in Tennessee," Mrs. Alford said.
The Alfords drove about 600 miles to see their son that night.
"He had lost 30 pounds," his mother said. "He looked like a skeleton. ... He couldn't drink from a glass. He couldn't hold a pen or eat with a fork. He couldn't button a shirt, couldn't drive, couldn't say his wife's name - how could anyone not have known he was sick?"
The Alfords took their son to the hospital emergency room, then to an Army medical clinic. From the Blanchfield Army Hospital, he was sent to the veteran's hospital in Nashville, where Dr. Steve J. Williams, clinical fellow in the Division of Infectious Diseases at Vanderbilt University Medical Center, eventually diagnosed CJD.
"I was very struck by Jamie's symptoms," Dr. Williams said. "I had never seen a patient like Jamie before."
Dr. Williams said Jamie's superiors might not have realized he was ill because Jamie tried so hard to hide his symptoms.
"Jamie was very smart," Dr. Williams said. "He was tremendously resourceful. He tried to hide his disease as long as he could. He tried to compensate. When I asked him his birth date, he glanced at his nametag. He wanted so much to get it right."
A brain biopsy was performed May 29, and the sporadic CJD diagnosis was confirmed at the Armed Forces Institute of Pathology two weeks later. The National Prion Disease Surveillance Center also examined the brain tissue, to confirm it was not a case of new variant CJD.
In May, Staff Sgt. Alford was still able to recall and describe, in broken sentences, how he was treated by his superiors in Kuwait.
"They called him stupid, called him lazy," his father said. "It made him so angry and there was nothing he could do."
Mr. Alford's other son, Billy, is in the National Guard. Both of Jamie Alford's grandfathers and two great-uncles fought in World War II. Mr. Alford says he still loves the military.
"But we need to remove cruel commanders," he said.
Doctors who treated Staff Sgt. Alford wrote letters supporting the family's efforts to correct his record and restore his rank.
The Alfords filed paperwork to challenge the demotion. And they asked for apologies from 12 individuals in the 5th Special Forces Group who they say were "involved in the persecution both verbally and physically" of their son.
U.S. Rep. Max Sandlin, D-Marshall, intervened on the Alfords' behalf and received a reply from the Army on July 30.
"The 5th SFG(A) would like to express its deepest concerns to Sergeant Alford and his family," wrote Lt. Col. Johan C. Haraldsen from the Office of Special Inquiries at Fort Campbell. "His disease was not known prior to or during his [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 at that time."
The Alfords received no reply to their application to correct Staff Sgt. Alford's record, and so they sought help from the Army Review Boards Agency. That request was denied in August in a letter stating the Alfords had not exhausted other remedies.
Spec. Alford, said her husband's Green Beret teammates had been helpful and supportive during this ordeal.
"His team has been fantastic," she said. "They call when they can and ask how he's doing. They helped me move all our stuff out of our house in Tennessee.
"That was hard," she said. "That's when it hit me that he'd never be coming back."
Mr. Sandlin's office and The Dallas Morning News made further inquiries, and the Alfords were informed Sept. 24 that the Army had reinstated Staff Sgt. Alford's rank.
"The Army tries to take care of its people as best it can," said Maj. Gowan of the Special Forces. "Getting things done like this often takes a long time. They're trying to do the right thing and act with compassion in light of Sergeant Alford's misfortune."
Surrounded by his family, Staff Sgt. Alford was in the hospital with a kidney infection when his father received the news in a phone call from the major who is second in command of the battalion.
"He's a good man," Mr. Alford said. "He asked about Jamie. He assured us that everything had been corrected. ... It took too long. But we're glad it's finally done."
Staff Sgt. Alford is unable to comprehend that he's been vindicated.
But his father confessed that he told a white lie to his son three months ago, when Jamie was still able to understand.
"I told him they'd already corrected it," Mr. Alford said. "I wanted him to know that. If I had waited 'til now it would have been too late."