Nanakuli family's struggle now spans four generationsSunday, September 7, 2008By Will HooverAdvertiser Staff WriterMonica Bell is able to remain calm and cheerful even as her legs swell and ache, and she's feeling nauseous — frequent reminders of the diabetes that has laid waste to three generations of her family and taken hold of a fourth.Like many who feel fine early on despite having diabetes, Bell paid little heed to her illness after she was diagnosed 20 years ago.No more.Today, she's going blind and diabetes rules her very life."I get sick on a daily basis," said Bell. "It's a nasty disease. It's with me at all times. It never goes away. Every day it is a challenge."Her Hawaiian family has suffered profoundly because of diabetes, and to see what it has done to them is to witness the epidemic proportions the disease has reached on the Wai'anae Coast, where Bell and her family live on Mano Avenue in Nanakuli.The disease killed Monica's father, and several of his siblings. Her mother, whose kidney failure is a result of diabetes, spends four hours three times a week attached to a dialysis machine. All three of Monica's sisters have diabetes and take daily insulin injections, as do Monica and her mother.Monica's daughter, Taryn-Courtney Bell — TC to those who know her — was diagnosed with diabetes when she was only 6. At 13, she has been on insulin injections more than half her life. And last year Monica's son, Alika, 16, was also diagnosed with diabetes.As for Bell herself, diabetes has robbed her of the ability to drive, hold a job, walk easily, or ever again enjoy a sense of well-being. The vision in her right eye is gone, and although she still has limited sight in her left eye, she's unable to focus. Even the sight she has left could eventually fade."I do think about the future," she said. "And it is scary. I think you just have to get tight control on your diabetes. You probably can't get better. But you maybe can prevent it from getting worse."Household caretakerOf those who live in the Bell household, only Monica's husband, Gino, a truck driver, does not have diabetes. But the disease has affected his life all the same and rendered him the household caretaker."Gino does everything for me and our kids," said Monica, 38, who married Gino Bell in 1992. "He's just wonderful. He has things he likes to do — he fishes and surfs. But before he does anything, he makes sure that the family is doing well."He has altered his diet to meet the improving eating habits of his family. He dashes to the store on short notice at all hours. Since Monica can no longer see to drive, Gino juggles his work schedule and takes vacation days to accommodate various doctor and dialysis appointments, eye examinations, American Diabetes Association functions, or the diabetes classes his two children attend at the Kaiser Nanaikeola Clinic every month."I'm like the backbone," said Gino, 47, who has worked 17 years for a firm that subcontracts to the military. "I've saved up a lot of hours, so I can help out, taking them here and there."He says he is grateful to be able to do it.His pleasant disposition can be a calming influence on a family often straining simply to function, according to his wife.'Lot of starches'Monica's mother, Archidalia Kawa'a, 64, frets about her fellow Hawaiians who suffer in great numbers from the disease, yet tend to be the last and least to seek treatment, because of cultural pride, shame or a lack of health insurance. By the time many do reach out for medical assistance it's often too late, she says."Diabetes is terrible," said Kawa'a. "My husband, John, had both his legs amputated because of it. He died at 59. His mother died at 49. His father died at about 54. I have diabetes. All four of my daughters have diabetes, and my grandchildren have diabetes."Furthermore, those in the community who are diagnosed in time to make a difference frequently fail to heed doctors' warnings that they should exercise, eat healthy, and manage their sugar levels, she says. Since they don't feel ill or exhibit symptoms in the beginning, they are less inclined to work out or give up fast foods and snacks."It's a way of life in Hawai'i," she said. "That's how we eat since we were young — lot of starches."Monica Bell, for instance, wasn't especially bothered when she was diagnosed in 1988 as a senior at Nanakuli High and Intermediate School. She didn't know much about the disease, and although she was overweight, she considered herself generally fit.Her concern rose after her mother was diagnosed a short time later, she says. When her father became seriously ill in the late 1990s, "it opened my eyes to what diabetes is."Still, she didn't alter her habits. By the time her father died on Christmas Day in 2002, she could no longer see well enough to drive. The following year, because of her failing eyesight and debilitating nerve damage in her legs, Bell left her job and began collecting Social Security benefits.She is stoic about the outcome."It was my own fault. I never listened. But now I'm trying to do my best because I've got to help my kids out."For her the alarm bells rang loudest when her daughter was diagnosed with type 2 diabetes, the kind that has stricken the rest of the family and a form of the disease once associated with older adults."She was so young," she said. "Even the doctors were surprised."pushing healthy lifestyleA genetic susceptibility associated with type 2 diabetes can be triggered by behavioral factors such as obesity and a sedentary lifestyle. There is also evidence that diabetes may run in families, according to experts.Today, Monica worries that TC and Alika won't take diabetes seriously until they're suffering from the permanent or life-threatening effects.TC tends to eat too much and not the right foods, Monica says. Alika, who is lean and trim at 5 feet 10 and 155 pounds, doesn't eat enough of anything. And for the diabetic, eating too little can be as worrisome as pigging out on fries and double cheeseburgers.So their mother pushes them both to watch their diets and take their meds."I tell them, 'You don't want to end up like me.' "To that end, she and Gino encourage TC and Alika to attend two-hour interactive diabetes classes at Kaiser Permanente's Nanaikeola Clinic in Nanakuli, where a doctor, nurse practitioner, dietitian and behavior medicine specialist guide the Bell children and two other young diabetics through the various aspects of managing their disease.While the purpose is serious, the classes are low-pressure, light-hearted affairs in which the participants prepare healthy meals, compete on computer games aimed at diabetes education, and discuss useful ways of coping with their disease.The sessions include playful physical exercises, such as a vigorous match of balloon volleyball, or no-net ping pong waged across conference room tables shoved together. Invariably, these exercises culminate in raucous balloon popping or wild ping pong ball batting, but not before everyone — clinical staff included — has had a good workout.going for the veggiesThere are even encouraging signs that some of it may be achieving the desired effect. In a recent class, dietitian Justin Miyashiro watched as the kids whipped up a batch of healthy dill dip and served it with a platter of delicately prepared celery sticks, cut carrots, and sliced mushrooms and cucumbers.Not only did Alika polish off a plate of vegetables and dip, he quietly returned for seconds, which he also finished. Likewise, TC said she enjoyed the food — "Especially the mushrooms! I like them. We've got to get some of this stuff."As the class was winding down, Miyashiro threw the discussion open to suggestions for next month's healthy meal."Portuguese sausage with eggs," piped up Alika."Is that healthy?" wondered Miyashiro."OK," replied Alika, to the laughter of all present, "Portuguese sausage and eggs — with tofu."Reach Will Hoover at whoover@honoluluadvertiser.com.
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