Aging Well: Waikele woman with ALS works to help others with the disease
WAIKELE, Hawaii - It's a devastating disease that affects about 100 people in Hawaii. ALS, or Lou Gehrig's Disease, affects the nerve cells in the brain and spinal cord, so that people lose control of their muscles. One Waikele woman battling this uncurable condition vows to fight so she and others with ALS can keep Aging Well.
This is a good day for 53-year-old Sharlene "Pebblz" Ronquilio. She has ALS but today, she's still walking and talking on her own. "I live in the moment, I praise God I'm here every morning, and try to live my life the way it used to be," she says between tears that come easily.
Pebblz was an athlete and a pageant winner. She's Mrs. Hawaii 2006; won a bodybuilding contest, the Paradise Cup Masters, in 2008; and competed in roller derby. "Last year at this time, I was rollerblading, playing basketball, and swimming," she reflects.
Doctors diagnosed her with the progressive neurodegenerative disease only a few months ago, on September 11, 2019, and now just three month later, she struggles to get dressed. Ronquilio looks at slightly gnarled fingers and admits, "Buttoning a pair of pants is so different."
ALS affects many seniors; most patients are 50 to 70 years old. The average life expectancy after diagnosis is three to five years. Terryn Davis of the ASL Association - Golden West Chapter describes how the disease affects the body: "People lose their ability to move, to talk, to swallow, to breathe." We pause for a moment to take this in before Pebblz' three beloved French Bulldogs barrel into the room to add a moment of levity.
"Look at you! Look at you, shy girl!" Pebblz exclaims to one of them, before turning the conversation to things she can control in her life. She is still mourning the life she lost, but is also embracing what she can gain.
She wants to raise awareness for the disease, which affects about 100 people in Hawaii. "I have a mission. I have to speak, to be that voice so others will know what to do if this affects their families," she says, referring to a series of Facebook posts documenting her journey on her page "Pebblz Ronquilio: Her Journey With ALS." This is how I found her story.
She also wants to help raise money to build an ALS clinic in the Islands that would house all ALS healthcare providers under one roof. "We don't have the same resources as people on the mainland. I've been in sites where people are diagnosed one day, and the next day in treatment. I don't have that," Pebblz says.
Pebblz is certainly strong enough to do it. Husband Rey Ronquilio cites a recent example: "She'll call for hours a day, nonstop, if you don't answer the phone. She'll fly to the mainland and knock on your door. That's what she did to Cedars-Sinai [Medical Center]."
Pebblz says she stays strong by surrounding herself with positive people. She likens herself to a blue butterfly. "My wings will be strong as I fly this journey," she promises. It's a journey she's taking not just for herself, but for everyone with her disease.
For more on ALS support groups in Hawaii, go to:
ALS Association Golden West Chapter
ALS Foundation of Hawaii
ALS Ohana of Hawaii