Wednesday, July 21, 2004

To the Reservation

Just to let you know, I am going to Cherokee North Carolina soon to see where the Trail of Tears began in the southern areas. I have heard that there is an outdoor play they do about the Trail of Tears so I am looking forward to it.

I hope to have some pictures to share later.

May your heart soar with joy.


Diabetics Fight Hidden Enemy

Diabetics fight hidden enemy

By Judy Nichols
The Arizona Republic
Dec. 8, 2002

The Pima Indians on the Gila River Reservation south of Phoenix have the highest rates of diabetes in the world.

Nearly 50 percent of all Pima adults are affected by Type II diabetes, the most common form. They die of it at almost seven times the rate of other Americans. And their children are diagnosed at younger and younger ages.

The disease, marked by high blood sugar and insulin resistance, turns a body against itself, destroying it piece by piece, sometimes claiming limbs, eyesight, kidneys.

But researchers are close to unlocking the code to reveal the disease's genetic hiding place. The knowledge could mean new and better drugs or even genetic intervention for the disease ravaging the tribe and growing numbers of people around the world.

Most of what is known about Type II diabetes - how it attacks a body, how it can be treated and, soon, where it lies in the genetic map - is owed to researchers at the National Institutes of Health on the fifth floor of the Phoenix Indian Medical Center and to the Pimas, who have offered themselves for study for the past 40 years.

The guillotine

Surgeons took Richard Wood's first leg with a guillotine amputation, a procedure that sounds medieval but is actually humanitarian in its attempt to save the knee and enough stump for a prosthetic.

Native American health
Slideshow: Pimas fight diabetes
Slideshow: Dealing with accidents

For diabetics like Wood, who is Pima, amputations are always the last resort, and the guillotine is used when the foot or lower leg is badly infected, usually gangrenous, and there is worry the infection may spread and possibly kill the patient.

It is what it sounds like.

"They chop it right off at the ankle," Wood explained.

The foot is severed and the wound left open while the infection is treated. Eventually, the leg is cut to the proper length, the stump sewn shut.

Wood's battle to save his leg had begun in 1996 when he stepped on a cactus spine that went through the sole of his tennis shoe and deep into his foot. He pulled it out, thinking he got it all; but the tiny barb on the end broke off, and the wound began to fester.

Surgeons almost cut off his foot then but were able to take just the middle toe. It was Christmastime and Wood spent it in the hospital.

A year later, again at Christmas, a second infection cost him two more toes. And the third year, it was an infection on the top of his foot. Nothing could be done. That year, at Christmas, they amputated the lower part of his leg.

"I remember thinking, 'Why did it happen to me?' "

A tissue scraping

Up four floors from the operating room at the medical center, Ruben Zepeda, 21, grimaces as Dr. Joy Bunt shoots anesthetic into his healthy left leg.

When it is numb, she uses a scalpel to cut through the skin, the layer of fat and the tough membrane surrounding the muscle. Then she inserts a large needle encased in a metal sheath. As she turns the needle, it scrapes off muscle cells.

Zepeda is Tohono O'odham, closely related to the Pima, from Pisinimo, and everyone is interested in his tissue. He is lean and sensitive to insulin, the opposite of those succumbing to diabetes.

Biochemist Karen Stone takes some for her experiments with insulin conducted down the hall. Barbara Vozarova, a doctor and research fellow from Slovakia who is studying the relationship between diabetes and inflammation, drops some tissue into a small metal bowl dipped in liquid nitrogen.

Clumps of cells freeze into tiny balls and Vozarova places them into vials that will be sent by overnight mail to the Joslin Diabetes Center in Boston. It is this kind of research that shows the risk factors for diabetes, which include being overweight, having a parent with the disease and having high insulin levels in the blood.

Researchers have found that there also is an environmental factor; babies of diabetic mothers have an increased risk that is related to their intrauterine environment. They also have found that kidney complications are increased with high blood pressure.

All these things were learned in Arizona. And they have led to many now-standard treatments: strict management of high blood pressure, better care and control of blood sugar during pregnancy and a new prevention trial program of diet, exercise and medications.

A new diagnosis

Still, the disease moves forward.

Earlier this year, Francis Crosby, 51, felt dizzy when he stood up, so he went to the doctor.

His blood sugar was 234, far higher than the normal 120.

Diagnosis: diabetes.

"It was depressing," said Crosby, of Phoenix, an engineering drafting specialist for the Maricopa County Flood Control District.

But Crosby is controlling his disease through diet and exercise.

"I eat a lot of veggies, and I read all the labels in the grocery store," he said. "It takes a lot longer to shop. And I cycle and walk an hour and a half every other day and half an hour on the off days."

He has lost 20 pounds and reduced his blood sugar to 103.

Looking for arthritis

The National Institutes of Health came to Arizona in the 1960s to see whether arthritis is more common in cold or warm climates, comparing the Pimas with the Blackfeet of Montana.

What researchers found was an epidemic of diabetes.

A formal study in 1965 found the highest rate ever recorded, and researchers began an in-depth analysis of the community. Since then, each tribal member has been given a detailed exam every two years beginning at age 5.

To do its work, the NIH paid for a fifth floor at the Phoenix Indian Medical Center, built in the early 1970s, for its research facility.

More than 100 people, including 30 M.D.s and Ph.D.s, work there, and they conduct clinical investigations and lab-based research in biochemistry and genetics.

Researchers are working on 15 large-scale studies, including one on diabetic kidney disease, one on women who were diabetic during pregnancy and their children, and one on the differences in brain function of overweight people.

They study insulin resistance, how nerves react after meals, and metabolism rates.

Each Friday afternoon, at what they jokingly call the "gray-haired scientist hour," one of the researchers gives a report on his or her latest findings.

"The world owes a great debt to the Pimas for what we have learned through these studies," said Dr. Clifton "Bo" Bogardus III, who heads the facility.

The team is looking toward what may be its most promising finding, one that carries the most hope for improvements: isolating the gene or genes that cause diabetes.

Bogardus' team was the first to locate a span of genes on one chromosome that predict diabetes. The team's work has since been duplicated for several other races: White, Asian and Black.

They also have targeted a span on another chromosome that marks a person for obesity. That, too, has been duplicated in Whites.

They recently met with an international group of scientists from the United States, China, England and France, and are preparing a multimillion-dollar proposal that would pool DNA data from the different groups and look for the specific diabetes gene.

Bogardus said narrowing the span of genes could be done quickly, then the real work would begin to find the actual gene or genes, which could take a couple of years or a decade.

A family connection

Wood learned he was diabetic during his annual firefighter physical in 1988. He was 30 and the third generation to fall victim; his grandparents got diabetes in their 60s, his parents in their 30s.

Wood's father, an athlete who watched what he ate, didn't smoke and didn't drink, had to have dialysis twice a week and eventually died of a heart attack while on the dialysis machine.

Wood likes good times. He likes family reunions, where everyone in his sports-crazy family plays basketball. He likes playing pool and darts. And dancing a country two-step or a fox trot.

He likes to eat. And he has been known to have a few drinks.

But he works hard, too.

When he recovered from his first amputation, he went to work for the U.S. Census Bureau, helping prepare for the 2000 census and later working on cold files, where census workers couldn't get residents to fill out the forms.

"They gave me 70 cases, places where they couldn't get answers," he said.

He was working on his cases on Sept. 11, 2001, when the planes hijacked by terrorists flew into the World Trade Center and the Pentagon. A few days later, he was so depressed that he went with a friend to have a few drinks at a pool hall.

On the way home, he wrecked his truck, scraping his stump.

For several months he doctored it and watched it, thinking it was OK.

And he worked. Sometimes 18 hours a day. Driving, climbing stairs, and walking, walking, walking. He was exhausted, but chalked it up to his caseload.

All the while an infection was festering in the bone of his stump, unknown to Wood, and it was attacking his good leg.

"It looked OK on the outside, but I kept getting sick," he said.

By April, he finally gave in.

"My legs were throbbing, my foot was glowing red. I said, 'Take me to the hospital.'

"I told my surgeon, 'I think I pushed it too far.' They showed me the X-ray, showed me how much tissue had died. I was heartsick."

It would be the guillotine again. And they had to cut off infected bone on his other stump, too.

This time, he would stay in the hospital for three months fighting the infection, three months before they could close up his stump.

"Our upbringing is that we're not supposed to show weakness. But I was depressed, sick; I didn't talk to the nurses."

Memories of injections

Victoria Dawahoya, 35, remembers watching her grandmother inject herself with insulin. And the insulin bottles in the refrigerator.

It seemed everyone in her family had diabetes. Her grandmother. Her grandfather. Her mother. Her father. And her uncles, aunts and cousins.

Her grandmother told her about the big river that used to run through the land the Pimas lived on. She told her how they ate fish and rabbits, and the vegetables and beans they grew. How they were physically active, working on the harvest, dancing, playing sporting games.

She told Dawahoya how the dam had changed everything, taking away the river, the fish, the plants.

And she told Dawahoya to take care, eat well and drink lots of water, because too many of the Pimas were always at the hospital.

"She told us that the size of the chumauth (frybread) we made would be the size our underwear will be," Dawahoya said.

Dramatic change

Dr. Charlton Wilson, associate director of the Phoenix Indian Medical Center, said the increasing level of diabetes over the past 100 years is dramatic, "from a condition that was not apparent to some very bright people . . . to a chronic disease."

"It's a mixture of heredity and environment," Wilson said. "The change from non-existent to widespread is too fast to be only heredity. There has also been a great change in the environment. They have moved from a time with fewer food calories and a more strenuous active daily life to a time of abundance of food calories and a sedentary life."

The appearance of diabetes in young children also has changed the view of the medical community, he said.

"We used to think diabetes was the result of someone not eating right over a long period of time," Wilson said. "We don't lay that same guilt on children. It's not 30 years of not eating right."

Wilson cautions against categorizing blame.

"When you say it's 'just a gene,' it becomes a fault, an error, a mistake." he said. "It becomes a helpless, hopeless issue.

"When you say it's 'just the environment,' you say they should not eat modern food, that they should be hunters, gatherers, go back to their traditional ways, that they've fallen from that which they are supposed to do, that it's a failure.

"Specifically, diabetes is a factor of calories, exercise and insulin sensitivity."

Finding adaptations

Dawahoya developed gestational diabetes with her second pregnancy and had to inject insulin.

"When they told me I was diabetic, all I heard was 'die,' " she said.

She remembers that her son was about the same age she had been when she watched her grandmother give herself injections.

She told him about the Pimas and the dam, but she added her own part of the story: How when she was born there were Golden Arches, that fast food was a way of life for her, supersize portions, bigger cups of soda.

Now she controls her diabetes with diet and a pill that helps her pancreas produce insulin at night.

She has adapted traditional recipes to lessen their fat, like baking frybread. She walks an hour every day. She has lost 20 pounds.

Dawahoya's older brother, Edward "Tony" Allison, 40, found out he was diabetic when he emerged from his alcoholism in 1991.

"After I stopped drinking, I drank a lot of Coke," Allison said. "I wasn't feeling right. I was sleepy, tired, had anxiety."

And his diabetes is now complicated by a second diagnosis of fibromyalgia, a widespread musculoskeletal pain and fatigue disorder for which the cause is still unknown.

"I was a runner," Allison said. "Now I get pain from whatever I do." So he meditates, and does tai chi and yoga. When he's up to it, he walks the mall at Arizona Mills.

Allison said the health problems of his tribe are depressing.

"I think about it every day, hearing the life expectancy for men here is 55," he said. "I saw a friend of mine in the mall. . . . He just recently had his toes cut off from diabetes. It seems we're digging our own graves with our teeth."

Standing tall

When Wood first stood on his two new prostheses, he could see the top of the refrigerator, compliments of the man who fitted him for the artificial limbs.

"I was 5-10," Wood said. "I told him to make me 6 feet."

In the morning, when he first puts on his legs, they always hurt a little.

He prefers cowboy boots but wears tennis shoes now because they grip the ground better. He has given up the fancy footwork of the country two-step.

But he still can feel his phantom toes, feel them pushing down as he walks. Sometimes the top of his phantom foot itches, and he has to scratch around on his stump, looking for the corresponding area where a nerve is sending the itch signal to his brain.

Sometimes when he kicks something, he'll instinctively say, "Ouch."

And sometimes when he wakes from dreams where he has legs, he rolls over to get out of bed forgetting they are gone.

Reach the reporter at or (602) 444-8577.

Indians Living in Danger

Indians living in danger

By Judy Nichols
The Arizona Republic
Oct. 13, 2002

For most Americans the leading cause of death is heart disease, then cancer.

For Navajos, it's accidents.

The unintentional injury, or accidental, death rate for Navajos is 138.5 per 100,000 compared with 30.1 for all races.

It's the highest of all Indians.

Chuck Thomas remembers being 8, standing on the side of the road near Gallup, N.M., watching his grandmother walk across.

He saw the drunken driver who hit her. And he was with her at the hospital when she died two hours later.

They had been driving from their home on the Navajo Reservation to celebrate the Fourth of July in Gallup, but hit a cow that had strayed onto the road. Thomas' grandmother was going for help.

"It changed my whole childhood," said Thomas, 29, who earlier this year attended an alcohol treatment program in Gallup. "Every year around July 3rd I visualize the whole thing, every moment of it."

Motor vehicle accidents kill the most. The death rate: 87.2 per 100,000 in the Navajo area compared with 15.9 for all Americans. Almost a third of the Navajo accidents involve pedestrians.

"It impacts greatly on our community," said Nancy Bill, Navajo-area injury prevention specialist for the Indian Health Service. "The deaths are mostly young Navajo males, so it leaves families without a means of income. And most of them could be prevented."

But Native Americans also die in falls: from mesas in northern Arizona, from ice floes in Alaska, from poorly built stairs, from rodeo horses, and even from trips to outhouses at night.

They die of exposure.

And drowning.

And burns, because wood is used to heat homes and for cooking.

"Living a native lifestyle is a high-injury, hazardous situation," said Paul Sherry, chief executive of the Alaska Native Medical Center. "In our area, people travel by snow machines, in boats, in four-wheelers, by small, charter aircraft. All of these have inherently higher rates of injury and death."

"The 'Golden Hour'?" Bill asked, referring to the optimum time to receive needed medical attention. "It doesn't exist. I know people who have waited many hours. Even cellphones don't work in lots of places."

One factor in the carnage is poverty, said Alan Dellapenna, deputy director of the Indian Health Service Office of Environmental Health and Engineering and an expert on accidental deaths.

That means poorly built housing and older, poorly maintained vehicles, or no cars at all, which means people walk along the roads, Dellapenna said. And there are long miles of poorly built, poorly lit, sometimes-unstriped roads.

"You have an odd mix: The tribal roads are less developed, and they convey a high-risk population with low socioeconomic and alcohol problems," Dellapenna said.

Heartbreaking knock

For Robertson Preston of Bylas, on the San Carlos Apache Reservation, the knock on the door came one June evening just as he was about to go to bed.

"I had one boot off," Preston said. The police said they needed him, something about someone with his last name.

He and his wife, Veronica, drove about six miles to where the police cars were stopped.

Officers asked if he knew someone named Henson Preston.

"I said, 'Yes, that's my boy,' " Preston said, patting his chest over his heart. "They said, 'There's a body over there. Can you see if you can identify it?'

"They pulled back the sheet, and there he was."

Preston, who was recovering from heart surgery, collapsed on the side of the road. His wife crumbled, too.

Henson, 23, had been coming back from Phoenix, about 120 miles, from the hospital where he had been holding vigil for a sick baby in the family. Witnesses said Henson's white pickup truck ran off the road and flipped. Maybe he fell asleep. No one knows.

Now, twice a year, on Memorial Day and on Henson's birthday, the family tends the small white cross draped with blue flowers and crepe paper on the side of the road where he died.

The death robbed Robertson Preston, a medicine man, of a son and of one of his Crown Dancers, who perform in the most sacred Apache ceremonies.

In April, Preston performed the Sunrise Dance for his granddaughter, a dance for a girl coming into womanhood, a dance Henson had been urging his father to do soon.

"About halfway, I almost ran out of voice," Preston said. "That's when Henson would keep me going."

Dangerous roads

Federal money for improvements usually is targeted for the most dangerous roads, Dellapenna said. But tribes, which are sovereign and have their own police forces, often don't report fatalities to the state, so the roads don't get on the priority list. And Native Americans rarely are represented on regional and state transportation boards that decide where to spend money.

Dellapenna points to Arizona 86, which crosses the Tohono O'odham Reservation heading from Tucson to Sells.

"It's like driving back in time," Dellapenna said. "Before you get to the reservation, the road has wide lanes and a median. When you get onto the reservation, it's basically the paved old stagecoach line. It's never been upgraded from the '50s."

Nearly every mile, there's a white cross signifying a death, Dellapenna said.

The roads on the Navajo Reservation are no better.

"They're two-lane with narrow or no shoulders," Bill said. "It increases the number of head-on collisions. And there's no safe place to walk. A lot of the pedestrians killed are children."

Tribes are trying to stem the losses. They have put up fences to keep horses and cows off the road.

The Navajo Nation passed a seat belt law in 1988, even before Arizona did, and has instituted an internationally recognized program promoting child safety seats.

The death rates are half what they were 30 years ago. Still, the toll is high. Bill said one safety project focused on a four-mile stretch of U.S. 666, near Gallup. Some call it the Devil's Highway, in part because of the number and in part because of the death toll: eight people in one year.

In 1994, streetlights were installed, making it easier to see pedestrians. The death toll in following years: zero.

But it cost about $1 million a mile to install the lights, prohibitively expensive for the hundreds of miles of roads on the reservation.

Alcohol is another factor in the deaths, Bill said. Because liquor is not sold on the reservations, people walk or drive to border towns to drink, and some are killed returning home. Bootlegging also is a problem, she said.

And the situation is complicated by too few police to cover 25,000 square miles.

"There is a lax attitude about drinking and driving," Bill said. "I have seen people drinking and driving at all times of the day."

Hard lesson

Freddie Hale and his friends were partying hard on a Thursday night last April, driving a convertible down the back roads between Window Rock and Fort Defiance.

It was payday. They'd been drinking beer and a concoction of 7-Up, whiskey and peppermint schnapps they call Hop 'n' Schnapps.

"I was standing up in the back seat," Hale said. "I figure we were going about 100.

"The driver held his hands up and said, 'Watch me.' I think we gave him too much of that Hop 'n' Schnapps. We started sliding and the wheels caught. I remember flying through the air and hitting the ground hard."

Hale landed on his head. His brain started bleeding.

One of Hale's friends found his mother playing bingo at the tribal offices and told her about the accident.

"I ran out to the hospital," April Hale said. "It's right across from the hall. He was on a respirator and there was a big cut on his head. I thought we were going to lose him.

"I said, 'God, don't take my son yet,' and I held his hand."

Freddie Hale was flown to St. Joseph's Hospital and Medical Center in Phoenix. He was in a coma for more than a month. Then he began to come around.

Keeping faith

For weeks, Hale stayed at Barrow Neurological Institute in Phoenix, getting therapy, learning to walk again, brush his teeth, eat with a spoon.

Therapy included shooting hoops. Hale, who was on his high school's championship basketball team, can sink a lot.

But he spends most of his time in a wheelchair, and it's unlikely he'll regain enough balance to return to his job as a plasterer for La Plata Stucco, where he stood on scaffolding to stucco buildings.

Hale, his mother and teenage sister, live in a hogan with no electricity and no running water. They have three horses, 15 cows and 30 sheep. Hale was the only one with a job.

"We're behind on things, bills," April said. "It hurts the family. There's not enough to eat, (or to) buy supplies. We have car problems, and it takes a long time to buy parts, putting them on layaway."

The Hales can reel off a long list of friends and relatives who have been involved in car accidents: an aunt whose hip was broken when she was run off the road, a friend who can't walk after a head-on collision with a diesel truck.

Bill said disabilities, such as head injuries, are expensive for the tribe, and often force tribal members off the reservation to Phoenix for better services. Freddie hopes to return to school to learn about computers.

"I have faith in God," April said, relating a premonition her pastor had. "My pastor said he saw Freddie getting out of the wheelchair and coming to church."

Reach the reporter at or (602) 444-8577.