The Turtles’ Mark Volman Opens Up About Life With Lewy Body Dementia
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Mark Volman, founding member of music group The Turtles, opened up about his diagnosis of Lewy body dementia for the first time in an exclusive interview with People.
The musician was first diagnosed in 2020, after suffering from hallucinations, tremors, and difficulty concentrating, all symptoms of the progressive brain disorder, which is the second-most common form of degenerative dementia after Alzheimer’s, according to the publication. It affects an estimated 1.4 million people in the United States alone—including the late Robin Williams, who died by suicide after years of struggling with symptoms of the disease—and is caused by a buildup of protein, known as Lewy bodies, within nerve cells in the brain.
Since his diagnosis, Volman has learned to live with the effects of the disease, which include shifts in his cognitive ability and awareness, visual hallucinations, sleep disturbances, tremors and other Parkinsons-like movements. He's also come to accept what's to come. “I got hit by the knowledge that this was going to create a whole new part of my life. And I said, ‘OK, whatever’s going to happen will happen, but I’ll go as far as I can,’” he told the publication ahead of the June 20 release of his memoir, Happy Forever.
In 2018, he joined the faculty at Belmont University, where he led a music business program and began struggling to make it through his lectures. “I remember slurring, and I wasn’t sure what was going on,” he shared. “My brain wandered. I’d go off track. It made no sense.” The hallucinations began within the next couple of years, where he'd see Civil War soldiers in the field near his house and a bloody woman in the designs on his couch, as did the tremors.
Most patients have a life expectancy of about eight years once they're diagnosed, and by the end of their lives are not able to take care of themselves. According to Volman's nurse, Pilote, he seems to be an exception. "He’s a great example of resilience in the setting of a debilitating illness,” his nurse Pilote says. “He’s upbeat and charismatic, and he’s surrounded by people who care about him.”
Funnily enough, those people include both of his ex-wives, as well as his adult daughters, who all help him daily. He's also on medication to help control the tremors and the hallucinations, which his nurse says he has a "remarkable self-awareness of," and exercises daily, which has helped him prepare to hit the road again for the annual Happy Together tour, featuring The Turtles as headliners.
“Right now, for me, it’s not scary, although it probably should be,” he said. Performing again “has been tremendous” for the musician, which makes sense, according to Pilote.
“Living with dementia with Lewy bodies, you still have to live,” she shared. “It's important to engage in the things you enjoy, optimize your strengths, spend time doing the things you love with the people you love. And Mark is an excellent example of that. He's continued to live despite this diagnosis.”
