By Nina Wu

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When Kalihi native Glen Higa first felt stiffness in his neck and tremors, he went to see his doctor.

Higa was offered the opportunity to see a neurologist at the time, but turned it down, not realizing that he had early-onset Parkinson’s disease, a progressive neurological disorder that affects balance, movement and coordination.

He would officially be diagnosed with Parkinson’s a few years later, in 2018, at the age of 48.

Higa, now 55, looks back at those memories as president of the Hawaii Parkinson Association, with the mission of sharing as much as he can with others about the disease.

An estimated 8,000 people have been diagnosed with Parkinson’s in Hawaii, according to Higa, which is projected to double to 16,000 by the year 2030. There may be fewer or more, as there is no official registry.

But there is help and there is hope, he said.

“You can live your best life with Parkinson’s — not the easiest existence in the world, but you’re still able to do things that you could do previously before you were diagnosed,” he said. “Maybe it takes a little longer to do it. Maybe it’s not as easy a road to travel, but it’s still possible to do it.”

He still plays softball once a week, travels and works. The former sales and sports marketing executive is now a certified personal trainer for people with Parkinson’s.

“I try not to let Parkinson’s stop me,” he said. “It does slow me down a bit, but I don’t let it stop me at all.”

Higa will be on a panel at this Saturday’s “Parkinson’s IQ + You Honolulu” event at the Hilton Hawaiian Village Waikiki Beach Resort hosted by the Michael J. Fox Foundation for Parkinson’s Research.

The event is free and open to the public, with several informative panels, including the one Higa is part of, titled “Building Your Parkinson’s Care Team.” Panelists will focus on making the most of a doctor’s appointment, as well as the value of seeing a movement disorder specialist.

Another panel will discuss the latest in Parkinson’s research and the search for treatments and a cure, while another features community members turning education into action. An expo afterward allows participants to connect with resources.

It is the first time this event, which is held at four to five cities across the U.S. every year, will be held in Honolulu, according to Allie Signorelli, MJFF patient council member and event moderator.

Signorelli herself started experiencing symptoms at age 43, starting with a muscle twitch in her right leg. It would take four more years before her diagnosis with Parkinson’s in 2022.

“There’s a lot of misconceptions about Parkinson’s,” said Signorelli, now 50. “When I was diagnosed, all of the information I found was geared toward much older people, and often men. I didn’t think there were very many younger women living with it. I’ve learned that’s, unfortunately, not true since then.”

She calls the Fox Foundation a lifeline for people living with Parkinson’s, and says the events are a wonderful source of support.

“My experience is that people who come to this often self-identify as either being recently diagnosed or who are completely new to the Fox Foundation,” she said, “and without fail everywhere that I’ve hosted — people leave just so empowered and inspired, often in tears, because you feel very scared and overwhelmed when you hear that you have a disease like Parkinson’s. This provides a bounty of resources for people to learn from national organizations, but also from local ones.”

In the U.S., an estimated 1.1 million people are living with Parkinson’s disease, with the number expected to rise to 1.2 million by 2030, according to the Parkinson’s Foundation. It is the second most common neurodegenerative disease after Alzheimer’s.

A new study in 2023 estimated 90,000 people are diagnosed with Parkinson’s in the U.S. each year, a 50% increase from previously estimated rates of 60,000.

Scientists point to various possible reasons the number is increasing, including an aging population, increased awareness of the disease and possible environmental factors. While the incidence of Parkinson’s increases with age, about 10% to 20% experience symptoms before age 50, according to the American Parkinson Disease Association.

Actor Michael J. Fox, who was diagnosed with Parkinson’s in 1991 at age 29, started the foundation in 2000 after publicly disclosing his disease. Fox does not attend the events, which are free due to the generosity of sponsors.

Parkinson’s IQ + You Event

>> When: 10 a.m.-3 p.m., Saturday,.

>> Where: Hilton Hawaiian Village Waikiki Beach Resort, 2500 Kalia Road.

>> What: Informational sessions on building a Parkinson’s care team, the latest research, plus an expo featuring health care providers, community resources.

>> Cost: Free. Parking is also free for all attendees (boxed lunch provided for all registered attendees).

>> Accessibility: Event is designed for people at every stage of their journey with Parkinson’s.

>> Register for free, learn more at michaeljfox.org/PDIQHawaii