Ka Wai Ola - Office of Hawaiian Affairs, Volume 27, Number 5, 1 May 2010 — Home is whene the heart is [ARTICLE+ILLUSTRATION]

Home is whene the heart is

By Francine Murray KaWai Ola magine being held against your will, unable to move, speak, eat, barely able to breath on your own, trapped in your own body. This is the effeet of Amyotrophie Lateral Selerosis, or ALS. The rare degenerative disease, eommonly known as Lou Gehrig's disease, kills the body's motor neurons (the cells that control voluntary muscle movement), leading to muscle weakness, paralysis and eventually death. Miss Aloha Hawai'i 2010 Mahealani Nakaahiki has witnessed the ravages of ALS. Kaua'i-born and raised in Kahalu'u, before moving to California, she has seen the disease take its toll on her father Clarence "Bully" Nakaahiki, who was diagnosed with ALS in 2006. Subsequently, he and the 'ohana have moved back, to Waimea on Hawai'i Island, where he really wanted to be. Since winning the island's Miss Aloha Hawai'i Scholarship Pageant in November, Mahealani has

been working to create awareness about ALS in the Native Hawaiian community and beyond, to honor her father. On June 12, she will compete in the Miss Hawai'i Scholarship Pageant in Honolulu with ALS awareness as her platform and armed with her motto "Ho'omau." "This disease has definitely changed our lives, but it has also driven us to ho'omau, to persevere in the face of this brutal disease not only for Dad, but for ourselves," said Mahealani, a pre-nursing student at the University of Hawai'i-Hilo. There may be as few as 20 cases of ALS in the state, but Mahealani and her mother, Nohea, and brother Max are committed to helping family members of ALS patients to get the information they need and to care for their loved ones. "This hit us like a false crack," said Nohea. "He was a typical big Hawaiian boy, 240 pounds, a former Honolulu poliee officer and Kamehameha School graduate, just really active." Together, Nohea, Mahealani and Max, with the help of Mahealani's boyfriend, Leighton Hind, are the primary caregivers for their family patriarch, whomeveryone knew as an active man. At one point, however, he started complaining of phlegm and thought he had a cold. Then he began having trouble speaking. "His slurring got worse, and if you didn't know him, you might think by his speech that he'd been drinking too mueh," said Nohea. It took the doctors five months to diagnose him. After six months he could no longer play golf daily, and after a year he was using a walker. It has now been four years and he is bedridden and in hospice at the age of 46. "Doctors don't know what triggers it, but they think it might have been a head trauma," said Mahealani, adding that her Dad has the so-called bulbar form of the disease that starts in the upper body. The ALS Association estimates that 30,000 Americans, or two in every 100,000 people, have the disease. It is not contagious, and is known to strike all socioeconomie, racial or ethnic groups. There is no cure for this crippling disease, and Mahealani urges people to be aware of the early symptoms of ALS, including abnormal fatigue of the arms and/or legs, slurred speech, muscle cramps and twitches. She says, "Remember Ho'omau, and Faith Not Fear." May is ALS Awareness Month. To learn more about ALS visit alsa.org. ■

N A T I V E H A W A I I A N S A T THE T 0 P 0 F T H E I R GAMEl KŪLIA I K A NU'U STRIVE T0 REACH THE SUMMIT

Pageant queen Mahealani Nakaahiki puts family first. Mahealani Nakaahiki with mom Nohea, dad Clarence "Bully" and brother Max. - Courtesy photos