“I want to make the most of every day” (exclusive)

Turtles founding member Mark Volman, 76, opens up about his diagnosis of Lewy body dementia for the first time in an exclusive story in this week’s issue of PEOPLE. The “Happy Together” singer learned he had the progressive neurological disorder in 2020 after experiencing hallucinations, tremors and difficulty concentrating. But with a new book and a tour, Volman continues to live a full life despite the devastating illness, the same illness that Ted Turner And Robin Williams have been diagnosed.

At his home near Nashville, Mark Volman pauses for a moment to examine a red-flowered couch across the room. “Do you see a woman bleeding in the head? he asks, looking at the sofa. No, he is told, it’s just a sofa.

Volman, a founding member of 60s rock band The Turtles, has a story with this particular piece of furniture: During pandemic isolation, his mind began to warp the crimson floral pattern into the alarming sight he just saw . To hide the design that triggers the illusion, the sofa is usually hidden under a plain duvet cover. But that day, for a PEOPLE photo shoot, the duvet cover was removed, and the “woman” reappeared. Volman wants to make sure she’s not real. “You don’t see the woman with her bleeding head? he said again. No, he is reassured. “Okay,” he says evenly, then goes back to posing for the camera.

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The Turtles (with Mark Volman, bottom right) had a string of hits in the 60s, including ” src=”https://s.yimg.com/ny/api/res/1.2/zlMcTLn4QAQ_bT0lE3U8BQ–/YXBwaWQ9aGlnaGxhbmRlcjt3PTY0MDtoPTg4MA–/https://media.zenfs.com/en/people_218/321f3b1042bff158172aca67786eb2e5″ class=”caas-img”/>

Volman’s hallucination is a hallmark symptom of a form of Lewy body dementia (LBD), a progressive brain disorder that affects thinking, memory, and movement. The second most common form of degenerative dementia after Alzheimer’s disease, LBD affects approximately 1.4 million people in the United States and is caused by a buildup of clumps of proteins (called Lewy bodies) in nerve cells. of the brain. Volman’s form of disease, Lewy body dementia, “easily mimics other illnesses,” including Alzheimer’s disease, says Kristen Pilote, a nurse practitioner in adult acute care and gerontology at Vanderbilt University Medical. Center that treats Volman.

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Since her diagnosis in 2020, Volman has learned to live with the challenges of the disease, including fluctuations in cognitive ability and consciousness, visual hallucinations, disturbed REM sleep disorder, and tremors and movement symptoms of Parkinson-like. He also knows that what awaits him will be even more difficult. Over time, the effects of the disease will evolve into a “slow decline that will eventually interfere with his ability to function,” says Pilote, who specializes in cognitive neurology.

But Volman says he chooses to accept it as an unexpected next chapter. “I was struck that this was going to create a whole new part of my life. And I said, ‘Okay, whatever happens will happen, but I’ll go as far as I can.’ ”

Volman began his musical career in Los Angeles with the same kind of optimism. In 1963, he joined classmate Howard Kaylan’s band Crossfires as a roadie, but his harmony skills soon elevated him to what he calls “second banana” status in the band. Renamed The Turtles, the band had their first Top 10 hit in 1965 with a version of Bob Dylan’s “It Ain’t Me Babe”.

CBS via Getty

The Turtles performing on the Ed Sullivan Show in 1967″ src=”https://s.yimg.com/ny/api/res/1.2/JQMU2miea8tVAdHvh3Myrg–/YXBwaWQ9aGlnaGxhbmRlcjt3PTk2MDtoPTY0NQ–/https://media.zenfs.com/en/people_218/45a545b62f31a34793be093350fc1c5a” class=”caas-img”/>

Several hits followed, including their trademark, “Happy Together”, which in 1967 knocked The Beatles’ “Penny Lane” off the top spot. With his mass of curly hair, broad smile, and infectious tambourine-swirling energy, Volman stood out.

In 1970, however, shortly after playing a White House show for President Richard Nixon’s daughter, Tricia (it was his favorite band), the Turtles broke up amid a dispute with their record company. , and Volman and Kaylan began performing as a duo. Flo & Eddie, joining Frank Zappa’s band, the Mothers of Invention, and appearing on albums by artists as varied as Alice Cooper, T. Rex and Duran Duran.

Courtesy of Mark Volman

Mark Volman and Howard Kaylan, alias. Flo & Eddie, with Ozzy Osbourne for their radio show.” src=”https://s.yimg.com/ny/api/res/1.2/n8HeACu3y1VXkdCUjjdrCQ–/YXBwaWQ9aGlnaGxhbmRlcjt3PTk2MDtoPTY2NQ–/https://media.zenfs.com/en/people_218/b5e01cbf7f0aad03ed76e82c43993798″ class=”caas-img”/>

Memories of those heady days, partying with John Lennon and Jimi Hendrix, singing with Bruce Springsteen and Bono, are chronicled in his new memoir. Happy forever, will be released on June 20. “It all feels like a dream now,” Volman says. “I’m just a groupie at heart.”

The musician’s career took another surprising turn when he returned to school in his 40s and earned a master’s degree in screenwriting from Loyola Marymount University in 1999. In 2018, he was on the faculty of the Belmont University in Nashville leading a music business program, when he found himself struggling to keep up with his classes. “I remember hinging, and I wasn’t sure what was going on,” he says. “My brain wandered. I would be wrong. It made no sense.

Over the next two years, the hallucinations began. He would see Civil War soldiers in the field near his house. Faces appeared in the outlines of furniture and appliances. He started feeling tremors. When he performed Turtles tunes on tour a year, “I heard a lady say, ‘Her hand is shaking,'” he recalled. In April 2020, he was diagnosed with LBD, which provided answers but raised terrifying new questions. “The only person I knew linked to the disease was Robin Williams – and he’s dead,” Volman says. (The actor took his own life in 2014 after suffering painful physical and emotional symptoms from the disease for years.)

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Inevitably, patients with LBD will face a future in which they lose the ability to care for themselves; studies have shown that patients typically live eight years after diagnosis. “But Mark is an exception — he’s a great example of resilience in the face of a debilitating illness,” says his nurse Pilote. “He’s upbeat and charismatic, and he’s surrounded by people who care about him.”

Improbably, those people include his two ex-wives, who both live a few miles from Volman and who, along with his two adult daughters, help him on a daily basis. “He gets anxious at times – like any grieving process, it comes and goes,” says Emily Volman, who was married to Mark for 15 years, until 2015. “But he’s a ‘living’ person for today. “.”

Hollis Bennett

Mark Volman photographed for People at home in May.” src=”https://s.yimg.com/ny/api/res/1.2/aYwnok8f_IOEICuzzETJfg–/YXBwaWQ9aGlnaGxhbmRlcjt3PTk2MDtoPTY0MQ–/https://media.zenfs.com/en/people_218/0ed9212a3639737b753f04757b5d34fc” class=”caas-img”/>

Under medication to help control his tremors and hallucinations (“Mark has remarkable self-awareness of these, which has been beneficial to his quality of life,” says Pilote), Volman devotes himself to exercise. daily. “We call him the mayor of the Y,” Emily said. He visits the YMCA daily for circuit training, boxing lessons and walking.

Those workouts helped prepare him to hit the road again with the Happy Together Tour, an annual ’60s music festival that Volman and The Turtles (minus Kaylan, who stopped touring due to health issues) ) make the headlines. He travels by bus because, he says, “it’s the safest place for me. I can’t get lost or hurt. On a trip to Macy’s for a new mattress, he wandered off. “My girls thought about not letting me in the store,” he jokes. “I heard them say ‘Dad!’ ”

He seizes the moments when he can laugh at himself, even if he is aware of the difficult days ahead. “Right now, for me, it’s not scary, although it probably should be,” Volman says.

Bobby Bank/Getty

Volman on the Happy Together Tour in 2022.” src=”https://s.yimg.com/ny/api/res/1.2/ugDEf29kYHUguCm8ZFx5cg–/YXBwaWQ9aGlnaGxhbmRlcjt3PTk2MDtoPTY0MQ–/https://media.zenfs.com/en/people_218/7a989f2ae9fee902f8eb3296a2cc59d4″ class=”caas-img”/>

Being on the road is demanding, even for young musicians without medical conditions, but Volman, who has been on tour since May, says playing “has been great.” And staying active can benefit LBD patients, says Pilote. “Living with dementia with Lewy bodies, you still have to live,” she says. “It’s important to engage in the things you love, to optimize your strengths, to spend time doing the things you love with the people you love. And Mark is a great example of that. He continued to live despite this diagnosis.

And Volman says he’s not going to stop. “The challenges of this world affect everyone, and it was kind of fun to be on the other side of a challenge like this and say, ‘I feel good.’ My friends are here, I’m still here, and I want people to connect with me.

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