Ka Wai Ola - Office of Hawaiian Affairs, Volume 27, Number 5, 1 May 2010 — A story of enduring love [ARTICLE+ILLUSTRATION]

A story of enduring love

This īetter was sent by Maheaīani Nakaahiki of Kamueīa, the reigning Miss Aīoha Hawai'i 2010, whose pīatform is to bring awareness to Amyotrophic Lateraī Sclerosis, aka ALS orLou Gehrig's disease, whieh her father was diagnosed with in 2006. Dear Trustee Findsey, My name is Mahealani K. Nakaahiki. I am a prenursing student at the University of Hawai'i at Hilo and recently named Miss Aloha

Hawai'i 2010 in the Miss Kona Coffee/Miss Aloha Hawai'i Scholarship Pageant held on Nov. 7, 2009, here on the Big Island. As a resident of Kamuela, and at the urgency of family friends, I am submitting my request to your attention and hope that you ean somehow help me share my platform, whieh is on creating awareness of Amyotrophic Fateral Sclerosis (AFS, also known as Fou Gehrig's disease) with the Hawaiian community. As a Native Hawaiian, I would especially feel mueh pride in sharing my platform with the Hawaiian community and humbly ask OHA/Ka Wai Ola for such an opportunity either through a profile article or a short write-up on my platform, or just a mention of my family's journey through your column/update. I even invite you to eome to our home, in Kamuela, to meet my Dad and our family. At the time my Dad was diagnosed with AFS, the only other "Hawaiian" that my parents and I ever heard of having suffered with AFS was Charlie Wedemeyer, a standout football player from Punahou back in the 1960s. Three years into my Dad's diagnosis, through sharing Dad's joumey with friends and family, we found out that the father of one of Dad's classmates was recently diagnosed. (His classmate's father is also Hawaiian - the famed poster boy for statehood, Chester Kahapea.) We took great pleasure in trying to guide him and his 'ohana on what to expect, and where to go for resources (i.e. applying for Medicare, Social Security benefits, etc.). And when we held a fundraiser for my Dad in May in Honolulu, news of Dad's event led us to another wonderful loeal woman, Aunty Celeste See LINDSEY ūū pags 21

Rūbert K. Lindsey, Jr. Trustee, Hawai'i

LINDSEY Continued from page 17

Perkins, who was just diagnosed with AFS. She read about my Dad's fundraiser in the paper and reached out to my mom. We have been a source of resource for her and her 'ohana ever since. But, we know that there are many more who suffer from this devastating disease, and I would like to help those patients and their families know that they are not alone. Here is a little background on my Dad's battle with AFS and our family's journey, just to provide an idea on why I wish to share my platform with the Hawaiian community. My Dad, Clarence "Bully" Nakaahiki, a graduate of Kamehameha Schools (KS '81), a former lst lieutenant in the Army National Guard, former Honolulu Poliee Officer, former softball eoaeh, and my hero, was diagnosed with AFS in 2006 at the age of 43. Dad, who was born and raised on the Island of Kaua'i, was extremely healthy and active, hardly ever sick and just so full of life, all of a sudden complained of "galas" stuck in his throat, then he started having trouble speaking. After undergoing numerous tests and about five months later, Dad was diagnosed with AFS, whieh is a progressive neurodegenerative disease that affects nerve cells (motor neurons) in the brain and spinal cord. When motor neurons die, the ability for the brain to control muscle movement is lost. The brain is not affected - the mind remains intact - but the result of this disease is paralysis and death. There is no known cause or cure. AFS is one of the most devastating, heartbreaking and merciless diseases out there. The life expectancy for someone who has the type of AFS that my Dad has (Bulbar, whieh means it affects the upper neurons first, affects the ability to speak, swallow and breathe - before progressing to all motor neurons) is two to five years from the onset of the symptoms. AFS is either "sporadic," meaning it hits anyone, anywhere, without warning or cause; or "familial," whieh means it runs in the family, it is inherited, such as with famed loeal artist Peggy Chun, who passed away from AFS in November 2008. No one in my family has ever been diagnosed with AFS. We (me, my mom, Nohea, and my brother Max) had to learn about it and most importantly, learn how to care for Dad through our

own research, through my Dad's AFS specialists and AFS medieal team in San Francisco, and through our own trial and error. Knowing where to go for support, how to get help, equipment and supplies was also all done on our own. In fact, my mom, brother and I have been my Dad's only caregivers from the time of his diagnosis until now. My boyfriend, Leighton Hind, 25, is also part of our 'ohana and contributes in helping us and our Dad. The disease has been aggressive and cruel. When Dad was diagnosed in July 2006, his symptoms were limited to his speech, swallowing and breathing. At 5 feet 10 inches, he weighed over 200 pounds, still able to drive, golf and eook for the family. But, by July 2007, Dad needed a feeding tube and was walking with the aid of a walker. By November 2007, he became wheelchair-bound and by August 2008, Dad's condition had gotten to the point where his lung capacity dropped to 30 percent and we had to make a family decision: have Dad undergo a tracheotomy (a surgical procedure to create an opening through the neek into the windpipe, in whieh a tube is placed to provide an airway and to remove secretions from the lungs) or choose Hospice. We chose Hospice for quality-of-life reasons and have been caring for Dad here at home with da kōkua of North Hawai'i Hospice. Today, in 2009, just three short years after Dad's iniīial diagnosis, he weighs 160 pounds and is bed-bound and completely dependent on me, my mom and my brother. The only way he ean communicate is through his eyebrows. Dad, a onee vibrant, fun-lov-ing, competitive, practicaljoking, proud Hawaiian who loved to talk, laugh, eook, play sports and spend time being active with me, my mom and my brother, is trapped in a body that is shutting down. He's like a mummy: he can't move or communicate other than through the movement of his eyes and eyebrows, but he has all his senses and intelligence. His mind is fully intact, and if he could shout out and tell us how he feels, he would. He can't even tell us what he wants or needs. If his nose itches or he wants his arm scratched, we have to play the guessing game to figure it out or use his alphabet board and try to spell out what he needs through head and eyebrow movements. I've been a softball player since I was 5 years old, playing all the way through high school and junior college, and hopefully

I will have an opportunity to play one more season for my Dad while I am attending UH-Hilo. Dad coached me and my brother in every sport possible. He was always my "catch-catch" partner, always pushing me to try harder and most importantly, always reinforcing the "finish what you start" philosophy: to never give up, whieh is our family motto to this day. 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. The last three years have been challenging with every loss of Dad's mobility and independence, frustrating (especially trying to figure out where to go for resources and assistance), and heartbreaking. However, the joumey has also been rewarding as we have met and have dealt with eaeh ehallenge head-on. We have done the impossible so many times. Our Hawaiian values and our love for Dad help us every step of the way. My platform on creating awareness of AFS is important to me, my mom and my brother, because it is a tribute to my Dad. Dad has always lived life with plenty of "Aloha." Dad would give when he didn't have mueh to give. He would help family, friends and strangers alike without any expectation of getting anything in return. Dad was always the first to volunteer to help anyone, anything, any project. Dad would always pull over and help people with car troubles on the side of the road. He would always offer to help anyone with anything. He had pahenee like no other and was (and still is) loved by so many. My goal is to share the mana'o my mom, brother and I have learned in caring for my Dad; to help others not only learn about this disease, but to help other families affected by this cruel disease by guiding them to the necessary resources available to them, including tools, equipment and supplies necessary at every phase of the disease; to let them know that they are not alone and that they too ean get through their journey with dignity, pride, love and hope. We nearly lost Dad in November 2009 due to respiratory failure exacerbated by pneumonia and an infection. And it happened on the night of the Miss Kona Coffee Pageant held at Hāpuna Resort. Two hours before my mom was set to wheel my Dad over to the ballroom, my Dad went into respiratory dis-

tress in my parents' hotel room (they had spent the night to make it easy on my Dad and had the hospice nurse with them at the time). The hospice nurse told my mom that my Dad wouldn't make it through the night unless my mom released Hospice and had Dad rushed to the hospital, whieh she did. Dad was airlifted to Queen's Medical Center. I had no elue what had transpired until hours after the pageant ended. It would have been tragic for me and my family if my Dad passed away that night in the hotel room. Dad is at the stage of the disease the doctors eall "end of life," but yet, he continues to amaze doctors with his strong will to live. Dad was not expected to pull through, and yet, he did. Our new motto: Faith Not Fear has been added to our family motto to "Ho'omau." Anyway ... we have learned so mueh and have done so mueh and we want to help others not go through the frustrations that we have. It's bad enough to have to deal with the heartbreak of seeing someone you love slowly get locked in a body that is shutting down, while also trying to bring that person as mueh dignity and as mueh quality of life as possible. To deal with insuranee issues, with hnaneial issues, trying to figure out where to go for help, while also continuing with our own personal obligations and responsibilities above taking care of Dad (i.e. school and work for me and my brother; work for my mom while she cares for Dad around the eloek; Mom solely handles all the finances for Dad and our household so you ean imagine her responsibilities, including serving as my Dad's primary caregiver). But, we have figured it all out - we worked out a system that works for us - albeit, the hard way, but we did it. I want to help others to avoid those frustrations and guide them to resources to help them. This is my goal. Trustee Findsey, I know this is an especially long letter, and I appreciate that you have taken time to read this and consider my plea for your assistance in helping me share my platform with the Hawaiian community. I'm asking for a short profile or maybe something briefly mentioned in your article, whatever will work best for OHA and/or Ka Wai Ola. And, please know that my invitation for you to meet me and family is sincere. I know my parents would love to meet you. I thank you for your time and consideration. Humbly submitted, Mahealani K. Nakaahiki ■