Love, buddies and IPAs: Ventura hot-rodder faces ALS with help from his friends

They met just before Christmas 2015 through the dating site eHarmony. Something clicked.

Within months, Kevin McMillan and Tina Vargas were living together. She was there three years ago crying in a UCLA exam room when a doctor told him Lou Gehrig’s disease was crippling his body. She became his caregiver as the illness atrophied muscles and pushed him into a wheelchair.

Last summer, before he turned 63, she asked what he wanted.

“The first thing I said is, ‘I want to see one more birthday and I would like to marry you,’” McMillan remembered in his Ventura living room as Tina looked on. “It’s one of the things I wanted before I died.”

They married on Aug. 14, McMillan’s birthday, at the Ventura County Government Center. She wore a white dress. He manipulated his wheelchair into a standing position so he could look into her eyes.

“I felt complete, like a whole person,” said Tina who uses her husband’s surname. “We are partners in life. When he falls, I fall.”

Amyotrophic lateral sclerosis, or ALS, has no cure. It is diagnosed in as many as 3 of 100,000 people in the United States every year, attacking brain and spinal cord neurons that control muscle movement.

It weakens the body and simultaneously exaggerates reflexes, slowly eliminating the most basic body functions.

Most people die within five years of diagnosis though some live for more than a decade, usually as their bodies waste away. It is a uniquely horrible disease, said Dr. Bradley Hiner, an Oxnard neurologist.

“It robs the patient of (physical) capability while leaving the mind intact,” he said. “The patient’s self knowledge is there throughout. It’s that awful awareness of what you’re losing.”

'Is that my future?'

McMillan wears a bushy beard, a friendly smile and offers up a hand gnarled by ALS but still ready for a handshake. He waxes on about IPA beers, 1970s rock bands, and mostly, cars.

The longtime Ventura resident bought a root beer brown '57 Chevy when he was 16 and has spent much of his life working under hoods or cruising on a motorcycle. He owns McMillan’s Speed & Fab, an Oxnard restoration shop packed with classic cars and hot rods.

He’s the guy car people go to when they have a problem they can’t figure out.

“I can just call Kevin, and he’ll say you have to do this and that,” said longtime friend Danny Heupel. "Everyone knows him. He's been in the business for so long."

About four years ago, McMillan was riding his dirt bike when he discovered he could no longer switch gears. His foot wouldn’t follow his brain’s commands. Other muscles began to deteriorate. His friends noticed he was struggling to walk.

On Jan. 21, 2021, a UCLA doctor told him he had ALS. It’s the same disease that incapacitated his former father-in-law, Frank Devorick, some 30 years ago. Devorick, a longtime Oxnard police officer, died 18 months after he was diagnosed. His lungs failed.

Many people with ALS die the same way. Their respiratory systems weaken to the point where they can no longer breathe.

“I can’t think of a worse way to die,” McMillan said, reflecting too on Steve McMichael, the former Chicago Bears defensive tackle nicknamed “Mongo.” He was diagnosed with ALS three years ago and now can no longer move. “I thought, ‘Is that my future?’”

The worst fears

More than three years after the diagnosis, McMillan can no longer work on cars or ride motorcycles or grip a drinking glass. He stays in his wheelchair. When he ventures out and can’t get up from a chair or the bed, Tina uses a sling and a hospital lifting device to haul him up.

He’s still high functioning. He can eat. He can talk. He can tell Siri to send texts.

Sometimes he takes short treks outdoors in a chair that can reach 6 mph. He envisions the reactions of people who are used to seeing him behind the wheel of a muscle car or a fast motorcycle.

“They’d be like, 'That’s McMillan. What the?!'” he said.

He takes medications with hopes of slowing down the disease but has no idea what it will bring next. He fears the possibility it will take away his speech and independent breathing. He said that’s not a given.

“Everyone’s ALS is different,” he said, noting the common theme is the disease gets worse. “Your world gets smaller and smaller. I’m trying to keep it as big as I can.”

The four Musketeers

When he was in the seventh grade at Ventura's Cabrillo Middle School, McMillan met Mark Hubbard, Danny Heupel and Shawn Quirk. They goofed off in math class, rode dirt bikes in the Santa Clara river bed and snuck in a racquet club at night to soak in the jacuzzi.

They grew into adulthood together. They went through weddings and divorces. When Quirk died of cancer in 2016, the other three leaned on each other to get through it.

Now, they’re helping each other again. Heupel, Hubbard and other friends take McMillan on outings, strapping the wheelchair into his specially designed van. They go to breweries to try out new IPAs with McMillan sipping his beer through a straw. They take him to doctor’s appointments. Sometimes, they just go on drives.

“We’ve all been there for each other,” said Hubbard who visits almost every day. “I said, ‘Anything I can do to make your life easier, I’m here.’”

Hubbard and Heupel can see the changes in their friend. Some days, his hands shake more and he struggles to make basic movements. The three friends talk about the future, treatment, faith and the unknowns that lie ahead.

“He can talk to us about anything,” Heupel said.

The support delivers reassurance that McMillan can still do “normal” things. It offers momentary escape.

“It’s everything for him to be able to be with his buddies,” Tina said. “Otherwise, he would be stuck in this house and his head would be spinning.”

McMillan said the support from his wife and his friends means he’s not alone. It allows him to push back on life boundaries that sometimes seem as tight as a vise.

It also shows the nature of his disease. ALS doesn’t limit its damage to one person. It unleashes a mushroom cloud that affects everything in its wake.

“This thing drags in everything with you,” McMillan said.

Tom Kisken covers health care and other news for the Ventura County Star. Reach him at tom.kisken@vcstar.com.

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This article originally appeared on Ventura County Star: Love, buddies and Lou Gehrig's disease: Ventura man faces deadly ALS