Billie Tohee

Small Town, Big Complications: The Community Impact of Diabetes

By Jill Waldbieser

Growing up in Oklahoma as a descendant of both the Iowa and Otoe-Missouria tribes, Billie Tohee saw a number of her extended family members undergo lower-limb amputations. She didn’t grasp at the time how unusual it was to see multiple amputations within the same family; as a kid, she just thought that was how things were.

What she didn’t know back then was that lower-limb amputations can be the result of complications of diabetes, a disease that afflicts American Indian and Alaska Native populations nearly three times as much as it does non-Hispanic white adults, according to the U.S. Department of Health and Human Services Office of Minority Health.

Despite advancements in diabetes management, lower-limb amputations related to the disease are increasing significantly—the number of diabetes-related hospitalizations due to amputation doubled between 2009 and 2019, according to the Centers for Disease Control and Prevention. Many are related to a lack of education around diabetes management and an unawareness of the disease’s complications and risks.

“Diabetes is rampant here in our little tribal community,” says Billie, 68, who now lives in Perkins, Oklahoma, a town of just over 3,000. She is much more aware of the problem today. Billie was diagnosed with type 2 diabetes more than a decade ago, and within the past two years, she has developed worsening pain from diabetic peripheral neuropathy (DPN), nerve damage caused by high blood sugar levels. And in recent years, more close friends and family members have undergone leg, foot, or toe amputations related to diabetes and DPN, including Billie’s daughter-in-law.

Today, her research on the subject isn’t only for herself. As the executive director for the National Indian Council on Aging (NICOA), Billie plans to continue educating herself and others on how to manage diabetes and avoid its complications.


Billie is the first to admit that she hasn’t always had the healthiest lifestyle. “I was eating hamburgers and french fries on a weekly basis, and not getting enough exercise,” she says. Some of the traditional Native American foods were lacking in nutrition, too. “One of our big treats is frybread, which is deep-fried dough,” she points out.

Still, she always felt pretty healthy, and didn’t give much thought to diabetes prevention. “I wasn’t sick very often,” she says. “I didn’t think of what was going on inside with my sugar and numbers. I wasn’t really educated about diabetes.”

That’s why her diagnosis in her 50s came as a shock—even after her older brother was diagnosed with diabetes several years prior, she didn’t think it would happen to her.

She admits that in the initial years after her diagnosis, she didn’t take her doctor’s advice to exercise more and adjust her diet as seriously as she should have.

She was prescribed metformin—a medication that helps restore insulin sensitivity—and more recently a diabetes drug that also is used for weight loss to help manage her glucose levels.

But a few years ago, about a decade after her diabetes diagnosis, the foot pain began.

“At first, I thought it was my shoes,” Billie recalls. “I wear shoes until they fall apart. But the area right beneath my toes, it felt like there was extra bone in there.” Unfortunately, she had begun developing symptoms of DPN.

Wearing different tennis shoes didn’t help. The burning, tingling sensation worsened, spreading from her right foot to her left.

Billie went to the Indian Health Service clinic in Perkins to figure out the “why” behind her increasing pain. She was referred to a neurologist, who diagnosed her with DPN and prescribed vitamin B12 injections. While B12 deficiency has been associated with DPN, Billie says the injections so far haven’t made much of a difference in her case. “If anything, I feel a little bit more advancement of the disease,” she says.

Billie (back left) with other board members for the National Indian Council on Aging (NICOA) in 2023. Billie served as a board member for several years and recently was appointed executive director for NICOA.


As Billie was working on improving her blood sugar and navigating the onset of her DPN pain, her older brother’s health had declined, and his leg was amputated due to complications of diabetes. Sadly, in February 2024, two weeks after his amputation, Billie’s brother, Abe Sylvester Alley, passed away at the age of 81.

Billie believes his death was related to complications from his diabetes and neuropathy. She felt helpless as her brother struggled with severe pain leading up to and following the amputation, and she was by his side when he died. “I’m glad I was there for support, but it was hard to watch somebody you love so much suffer like that,” she says. “So it told me, Billie, you’d better start taking care of yourself.”

In 2016, she and her brother had attended a NICOA conference together, and Billie was drawn to the organization’s mission of advocating for improved health, social services, and economic well-being for American Indian and Alaska Native elders. “The elders, to me, mean wisdom,” she shares. “They’re the ones we look to for preserving our language, the old ways, storytelling, and oral traditions.”

She became a NICOA member, and in the years that passed, she was voted in as a board member, then elected secretary and later chair of the board. Most recently, she was appointed as executive director for NICOA. The organization offers diabetes-specific education as part of its overall health programs and resources—sharing information about the higher rates of diabetes and amputations in Native populations, health disparities, and the importance of prevention.

While educating her community, Billie is improving her own disease management as well.

“I’ve become more nutrition-conscious,” she says—paying attention to food labels and reducing her sugar, salt, and caffeine intake. “Today, there is so much more awareness. Even my 15-year-old granddaughter eats so healthy.”

She’s also careful to get plenty of sleep and has become much more conscientious about the well-being of her feet. “I move slower to be aware of where I am walking,” she says, “and I do my best not to have any cuts or scratches to avoid any type of infection on my body.”


The pain, swelling, and cramps caused by Billie’s DPN have been difficult to manage. She gives herself foot massages, has tried soaking her feet, and uses over-the-counter pain relievers. She also takes gabapentin, a medication often prescribed to treat nerve pain, and has found some relief with over-the-counter lidocaine creams.

Unfortunately, DPN is a progressive disease, and Billie is learning that firsthand. “Six months ago, I was noticing when it was hurting,” she says. “Now, I notice when it’s not hurting.”

She has also noticed occasional pain in the tops of her hands, which she used to attribute to a lifetime of working at a keyboard as a paralegal. But now she worries it may be the DPN.

“I don’t feel normal very much with the neuropathy pain,” she says. But she hasn’t let that stop her from doing anything she wants, including acting. Billie has been an extra in several TV series and movies that were filmed in or near Oklahoma, working on the same sets as Robert De Niro and Leonardo DiCaprio. She has appeared in hit films and shows like Killers of the Flower Moon, Reservation Dogs, Yellowstone, and Tulsa King. She is hoping her DPN pain won’t keep her from continuing this hobby in the future.

“I just hope I don’t have to walk a lot on set,” she says. “I don’t consider myself old and feeble, I can still get around, but this neuropathy has made me more aware of how much I’m on my feet.”

Billie takes her disease a lot more seriously these days. She has encouraged her two grown sons to get screened for diabetes, so they can avoid the difficulties she has faced. Ultimately, she says, better awareness can help with prevention and treatment of both diabetes and DPN.

It’s a lesson she wishes she’d learned years ago: “It’s up to me to help myself.”