Kona nurse with neurological disease to sail world solo — before she can’t

Kona nurse Jenny Decker is only 38, but an internal clock inside of her ticks faster and faster to the day her rare hereditary disease will steal her ability to live her adventurous life — just as it already has limited her wheelchair-bound mother.

Decker’s hands don’t listen well to her brain, making simple things difficult, like buttoning a pair of pants or opening a bag of chips. The more she concentrates, the worse her hands tremble. Her legs don’t listen well either, often affecting her balance. And it’s only getting worse.

But Decker adapts. She always has. Living with Charcot-Marie-Tooth (CMT) — a neurological disorder with no cure that affects an estimated 126,000 people in the United States and 2.6 million worldwide — is all she knows.

So before she can’t, Decker wants to knock off the biggest item on her bucket list: circumnavigating the globe on a sailboat.

And she’s planning to do it solo, although she will have a first mate, Romeo, her 6-pound Maltese Yorkie. While Romeo is good company, she said he is no help “reefing the main.”

It’s an epic journey seven years in the making.

For those in the Kona area, you can hear all about it at Willie’s Hot Chicken on Friday, Jan. 13. Alan Wilson, an owner and a good friend of Decker’s, is holding a “FUNdraiser” for her. It runs from 6 to 9 p.m. and is featuring The Tremors.

Decker will talk about her dream adventure during sets.

“I got to tell you she is one of the most amazing women I’ve ever met,” Wilson said. “And the fact that she wants to do this to bring awareness to the disease and motivate others makes it special.”

Life has always been a challenge for Decker. She didn’t walk until she was 4. Some doctors thought she may never walk, but her life changed after having pro bono surgery on her legs at the Shriners Hospital in St. Louis, Mo.

She joked about having “Forest Gump braces.”

But she learned to walk without aids, although she always was clumsier than other kids. She experienced hand tremors. Tripping and falling was also a regular part of her life. She couldn’t pass physicals to play school sports.

Decker said she was constantly being misdiagnosed until age 19, when her mother found out her medical problems were caused by CMT. She and her mom both had high arches, a classic sign of the disease. Decker said she knew then she also had CMT.

She did her best to live her life that included getting a nursing degree. But as her mother’s disease progressed, so did her desire to cram in a lifetime of adventure before an ever-closing window of opportunity was shut for good.

“In 2017, I literally made a video that by 2020 I would own a sailboat and start sailing around the world,” Decker said. “I promised it to myself as I walked around the water at Kona harbor. The only problem is I had never lived on a boat or sailed any boat off the coast.”

A year earlier, she circumnavigated the Big Island solo — in a kayak. It was no small feat, and something that had not been documented before. She paddled clockwise more than 300 miles in 20 days, including a day when conditions got so bad with swells of 10 to 12 feet and winds at 20 to 25 knots that a small craft advisory was warranted. She was worried about being pushed out to sea, never to be seen again.

The trip also required swimming in the dark before dawn to locations sometimes a half mile offshore, where she had safely anchored her kayak overnight because shore breaks prevented her from paddling to the coastline. She swam in the dark because it was easier to see the LED light on the kayak.

But life on a liveaboard boat would be quite different. So to try it out, she traveled to Alaska to live and work on a commercial fishing boat. For anyone who has watched “Deadliest Catch,” they would know it is not easy or glamorous.

Laboring on a boat out of the island of Kodiak, she was permanently exhausted from 16 to 18 hour workdays, mostly while wet, with no TV, no WiFi, no running water and no head [bathroom]. Life on the F/V Matilda Bay was austere and grueling.

After the 100-day fishing stint was over, Decker came to the realization: “I loved it. … I’m not saying I loved it the whole time, but I have amazing footage of using a bucket [to do her business] in the back of the deck while orca whales are coming up.”

She loved it so much she returned to Alaska for a second commercial fishing stint, only this time on the F/V Eileen that was much nicer and had a bathroom. She also returned because the money was exceptional, which was helping to pay off all her debts.

Decker returned to the Big Island as a traveling nurse at Kona Community Hospital, where she ended up signing on as staff. In Kona, she joined a sailing club and sailed with friends who owned boats to learn everything she could about the liveaboard lifestyle.

In early 2020, she was ready to begin her dream of sailing around the world, which at the time included doing it with her partner.

She sold everything she owned in Hawai’i, bought a van on the mainland and began searching for the perfect sailboat in Florida. She and her partner decided on a vessel called “Made of the Sea” and sailed from Lake Worth for the Bahamas on March 12, 2020 for what they thought would be an epic journey. It lasted one country.

“We checked into the Bahamas days before the whole world shutdown,” she said.

They spent 3 1/2 weeks on a deserted island with no contact with the outside world. When they showed up at Green Turtle Cay in the Abacos, Bahamian officials wanted to know where they came from.

Then they were told: “You can’t move your vessel.” The COVID-19 pandemic was at its early, scary, unknown stage.

For 2 1/2 months they were stranded at sea, fortunately with about 3 months of provisions. When they were allowed to leave, the Atlantic hurricane season now was upon them, so they sailed back to the United States, which “fortunately let us back in,” Decker said.

They stored the boat and she went back to St. Louis, where she grew up, to take a crisis COVID-19 nursing assignment.

Working five 12-hour night shifts a week while on your feet, and doing the emotionally draining work of dealing with dying COVID patients, is tough for anyone, but especially for Decker with her neurological problems. She was in a lot of pain, but it was lucrative work, and she needed the money for her dream.

In 2021, when she was ready to start the big trip again, her partner became her ex. “It turns out it was more my dream than a combined dream,” she said.

The breakup was devastating. Decker thought long and hard about selling the boat and trashing the whole idea.

“I didn’t know if I could solo sail,” she said. “I didn’t think I knew enough. I debated for a long time and called my friend Dustin.”

That friend, Dustin Reynolds, was nearing the end of his own solo circumnavigation journey in a sailboat. He told her: “I read ‘How to Sail for Dummys.’ I have one arm and one leg — and you already have more experience. You can do it.”

Decker bought out her ex’s portion of the boat, stopped sulking, and began the solo trip again. It began well, and after every 100 miles, her confidence grew stronger.

But in an instant the trip ended, when a faulty chain plate led to the boat’s dismasting. It’s as bad as it sounds, when the sails break that propel the boat. Decker was stranded in the Atlantic.

“Was the dismasting the universe trying to tell me something,” she said.

But Reynolds said it just wasn’t the right boat for her. And he knew what was the perfect boat, his Bristol 36 called Tiama. He bought the vessel while in the Thailand during his own 7 1/2-year solo trip, which he completed in Kona in December 2021.

Reynolds set a world record as the first double amputee to circumnavigate the world solo in a sailboat. And he pointed out Decker could be the second person to set a world record in that boat as the first person with Charcot-Marie-Tooth disease to sail around the world solo.

“Dustin also said, ‘Hawai’i is where your heart is. Where you should start and finish. Where you learned everything about the ocean.’ It just seemed right,” Decker said.

She flew back to Kona in May 2022, bought the 35 1/2-foot liveaboard sailboat that is worth about $65,000, and began working on some needed repairs and upgrades, including a $10,000 engine install.

To get used to the boat, Decker took a 21-day roundtrip to the Palmyra Atoll. Reynolds went with her to show her more than the ropes.

Decker’s disease makes her unsteady on land, so it’s extra difficult to navigate the deck of a rocking boat. She said she is always wearing a harness and strapped in to prevent going overboard.

“I also crawl, with no shame,” she said.

Decker said Reynolds actually gets around better on the boat than she does. Reynolds was struck by a drunk driver in 2008 in Waikōloa while on a motorcycle and left for dead. He lost his left leg and left arm.

They share a common bond of having to learn to adapt — and their love of the ocean.

Their 1,800-mile plus trip was tough with some relentless squalls, 40-knot winds, no wind and other bad weather conditions for sailing. And on boats, things are always breaking. Decker already has learned diesel engine 101, plumbing and how to fix, or how to figure out how to fix anything that stops working. For a person with a disease that makes turning a screwdriver difficult, it’s extra taxing and time-consuming work.

“She’s lost some dexterity in her hands and she has a hard time gripping,” Reynolds said of Deckerʻs ever worsening condition.

But when someone had to go up to the top of the mast at sea to fix a problem, Decker used her legs to straddle the mast, which burned her skin.

She learned a lesson, Reynolds said: “Should have worn pants.”

Decker said being able to spend extended time with Reynolds to learn more about the boat and get his advice was invaluable.

She hopes three times will be the charm. She plans to start her third attempt of the around-the-world sail around May, when a good weather window opens up. She also plans to start and finish in Kona.

But first she needs to get the boat in tip-top shape and raise needed funds. She has worked hard to get in the position of being able to buy the boat with cash and get debt free, but the long list of boat repairs needed are pricey and she’ll need money for the journey, which she expects will take 3 to 5 years with a lot of variables.

Reynolds told her she should try crowdfunding. Decker said she hesitated at first but has set up a GoFundMe called “Just a lap” for both financial and emotional support.

She said it is the opportunity to spread awareness about her disease and help others. During her around Big Island kayak trip, she raised $10,000 for the Hereditary Neuropathy Foundation, whose mission includes funding research that will lead to treatments and cures for Charcot-Marie-Tooth disease.

“I want to continue inspiring those with this ailment, or any disability for that matter,” she wrote. “I truly believe you can do anything you put your mind to. So this journey is to inspire all individuals to challenge themselves, set goals, go for them, and share all triumphs or heartaches… It is what makes us feel the most alive as humans and connects us.”

She also wants to do it for herself.

“One day I am going to be physically depend on others,” she said. “I know that itʻs coming. I see what happened to my mother and her quality of life and pain. I mean itʻs bad. It is one of the biggest reasons I do stuff and live my life to the fullest.

“I’m doing it now so when I am sitting around in a wheelchair, I can tell some really good stories.”