(December 5, 2008- Hawaii)

Clarence "Bully" Nakaahiki has always been, and still is, a fun-loving, positive, inspirational person who lights up every room he enters and brings warmth to people's hearts. 

On a break from college, Bully worked as a tour escort for a company, where he would meet and greet vacation package tourists at the airport, and serve as their go-to guy their entire stay in the islands.  He first met Victoria "Nohea", who worked for another tour company.  They were friends for at least a year before taking their relationship to the next level. 

" We were both always laughing, joking around, smiling and having a great time with our group of tourists and each other, " Nohea remembers.   

"Bully use to introduce me to our group of tourists as my 'Cousin Nohea'.  They would always ask, "'Really?', and he would laugh and say ' nah, but in Hawaii, everyone's pretty much related', and laugh again.'

He and Nohea have now been married for 23 years.

Always the competitive athlete, Bully loved to golf any chance he would get. He coached his kids from the time the kids could walk all the way through their high school years in sports such as t-ball, baseball, softball, volleyball, football, and golf.  And he was always up for a little competitive play against his wife and kids in tennis, basketball, ping-pong, video games, card games, you name it, and he would always win!! 

Bully enjoying a day out on Kaneohe Bay on Oahu

The Nakaahiki Family at the Golden Gate Bridge in 2001

Bully with his family, one month after diagnosis

In 2000, they decided, along with their 22-year old daughter, Mahealani, and their 20-year old son, Max, moved from Kahalu'u on the island of O'ahu to Aptos, California [Santa Cruz County],  where Bully worked as the Director of Security/Night Manager for the Seascape Resort for 7-years.

In December 2005, Bully began to notice trouble swallowing.   By the end of January 2006, his speech became slurred.  In May 2006, after undergoing months of tests, Bully was diagnosed with bulbar ALS. 

On July 19, 2006, Dr. Lomen-Hoerth at the ALS Clinic at UCSF Medical Center confirmed the diagnosis and immediately introduced Bully and his family to the ALS Association Greater Bay Area Chapter.  Through the assistance of Director of Patient and Family Services, Madelon Thomson, the family became embraced by a wonderful support system as they embarked on this new journey.  

At the time, Bully was still able to walk, drive, cook and golf, and was determined to beat the effects of this disease.  He continued to live life as always by golfing every day, cooking for the family, taking a family trip back home to Hawaii for the Thanksgiving holiday, and otherwise carrying on as usual. But by January 2007, Bully had lost his ability to grip his golf clubs. 

Still determined to beat ALS, he joined in the fight against ALS, and together with his family and friends participated in the 2007 Napa Walk to D'Feet ALS.

With incredible support of family and friends from all parts of the U.S., Team Nakaahiki managed to raise over $9,000.  In addition, Family and friends flew in from Oregon, Hawaii and other parts of California to join Bully in the Walk to D'Feet ALS.  Bully, by the way, made the entire walk in his slippahs!!  Always the practical joker, Bully's sense of humor and fun-loving ways follow him even to this day as he battles the aggressive and rapid progression of ALS.

Two months after the walk, Bully began to experience increased weakness of his muscles in his legs, arms and hands, and underwent a PEG surgery to insert a feeding tube.  Because of the unexpected rapid progression of the disease and weakness of Bully's muscles, Bully, his wife and children decided to move back to Hawaii to be closer to family. 

Cutting the ribbon at the Napa Walk to Defeat ALS

Bully with a new Communication Device

Despite the move, they continue to remain in touch with Bully's ALS team at the ALS Clinic at UCSF Medical Center and the ALS Association Greater Bay Area Chapter. 

Bully is so proud to be a part of this great association which has been such a needed and appreciated source of support from the very beginning of Bully's battle with ALS.

Since leaving California in August 2007, the disease has continued to rob Bully of more of his abilities.  He is now wheelchair bound and in August 2008, Bully was admitted into the North Hawaii Hospice program. 

Despite the rapid progression of the disease, Bully has not lost his competitive spirit, nor has he lost his sense of humor.  He refuses to stop living.  In fact, he continues to live his life as he has always lived it: with laughter, a sense of humor, his infectious smile and lots of love.

This Christmas, Nohea and the kids plan to take Bully to a nearby hotel called "Hapuna Golf Resort" and have a Christmas brunch. 

"Although Bully only eats through a feeding tube, it makes him happy to see all of us eat.  He use to be the cook in our family, and a great one at that, so it makes him happy, even to this day, to see us eat .  And to get him out of the house, with a beautiful beach setting, tradewinds blowing, will be nice for him. 

"We also have carolers coming by this weekend to sing for Bully."  Nohea continues, "He doesn't know yet - I'm keeping it as a surprise for him.

"Just the other day, we got him up into his wheelchair and wheeled him outside onto the deck so he could watch our kids (who are in their 20s) attempt to make a gingerbread house.  We hadn't been able to get him into his chair for a few weeks since he's going through another phase of weakness in his legs, so it was a great 2-hours for all of us to have him in the chair, outside, watching the kids, and laughing.  I took over 100 pictures that day.  Nuts, I know. 

" But...not to say everyday has been full of smiles and laughter.  We take it day-by-day.  Some days Bully is smiling and laughing, and other days he's "blah-ed" out or depressed".  And it has been a bit sad for me and the kids at times during this holiday season and even last season. 

Bully’s infectious smile , as he celebrates his 45th birthday
with his family.  (September 2008)