Actor Aaron Lazar Details the Road to His ALS Diagnosis and How He's Learned to 'Not Live Life Afraid' (Exclusive)

Being diagnosed with amyotrophic lateral sclerosis (ALS) marked the end of a long road for actor Aaron Lazar.

The 47-year-old stage veteran — known for roles on Broadway spanning two decades and touring in musicals like Les Misérables, A Little Night Music and The Light in the Piazza — publicly revealed in January that he has the progressive neurogenerative disorder. And in this week's issue of PEOPLE, he opens up about the relief he felt when doctors officially gave him the diagnosis.

“That phase to diagnosis was the worst time for me,” recalls Lazar, who lives in Los Angeles with his two sons (Julian, 14, and Adrian, 12, from his first marriage), and his fiancée, Nawal Bengholam, 47, whom he met in 2020.

"This is very, very hard now, but that time was terrible. Mentally being afraid and facing my own mortality is some of the most difficult adversity I've ever faced," he adds.

ALS is a cruel condition with no known cure that affects an average 5,000 new patients a year in the U.S. According to John Hopkins Medicine, ALS is also as Lou Gehrig’s disease and is "characterized by progressive degeneration of nerve cells in the spinal cord and brain."

The disease often begins with spasms and weakness in the hands, feet, arms or legs. Over time, symptoms progress and typically include "loss of motor control in the hands and arms" and "impairment in the use of the arms and legs" per John Hopkins Medicine. Those with ALS ultimately become a prisoner in their own body, without the ability to move, speak, swallow and eventually, breathe. 

For Lazar, his symptoms began in the summer of 2021 when he started feeling twitches in his quad.

"I Googled it and ALS came up pretty quick and I said, 'Are you kidding me?' " Lazar says. "My aunt Anita — my uncle's wife, so not blood related — she died from ALS when I was in my 20s, so I knew what ALS was from that. And then a year prior to this, my friend, Rebecca Luker had passed away from it. So I was like, 'I got to see a neurologist immediately.' "

Diagnosing ALS can be difficult. Many neurologic diseases present similar traits, so multiple tests and multiple symptoms are often needed.

You also can't get in to see a top ALS doctor, Lazar says, without a referral from a neurologist. So when his neurologist diagnosed Lazar with benign fasciculation cramp syndrome — a nerve condition "in which you experience frequent muscle twitches without having an underlying medical condition" per the Cleveland Clinic — it was clear Lazar wouldn't be seeing an ALS specialist.

"He did an EMG test, the electromyography test that they used as a diagnostic tool and said 'You don't have ALS,' " Lazar recounts. "What I've learned since is that he was right. Medically speaking, he could not diagnose ALS because I only had one symptom at that time. But... I don't know, there was something about it. I didn't really believe him deep down."

So Lazar got a second opinion, this time from a doctor at UCLA. And once again, he got the same diagnosis: benign fasciculation cramp syndrome.

"He said, 'It's not ALS and it won't turn into ALS," Lazar recounts.

Two matching determinations might have calmed many people's fears, but Lazar was still living with non-stop muscle twitches "as if they were normal," which was its own nightmare.

"You can't sleep at night when your whole body's twitching, and that's literally all you can focus on," he says. "It started to freak me out. It was scary, and I just let anxiety, insomnia and depression take over. That became that journey of the summer. It wasn't sustainable; I had to figure out what was wrong."

A third medical opinion also provided the same diagnosis, which finally convinced Lazar. "Once I got the third neurologist to say that, I was like, 'I'm putting this behind me. I'm moving on,' " he says. "And I started to piece my life back together."

Then, during a jog that December, Lazar noticed his left foot was hitting the pavement harder than his right foot. And he realized: he had foot drop. Another symptom of ALS, foot drop is characterized by "difficulty lifting the front part of the foot," per the Mayo Clinic.

Things moved much faster from then on. He was able to see a specialist and take another EMG, which — now six months later, showed results consistent with ALS. He then met with Dr. Matthew B. Harms at Columbia University in New York City, who conducted a half day of testing including a two-hour EMG, needles in Lazar's tongue, breathing tests, electroshock tests and a spinal tap to check for rare cancer.

"I never thought I'd be wishing for cancer," the actor laughs.

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Dr. Harms diagnosed Lazar with slow-moving ALS in January 2022, over two years ago. And while Lazar has experienced the physical effects of ALS since then (he now walks with the help of a cane, walker or motorized scooter), the Filthy Rich star is now living life with unwavering hope and optimism that he'll heal from this.

"Once the diagnosis came, I made the decision: '‘I’m not living whatever life I have left afraid,' " he says. "Because doing it the other way while I was waiting to find out what this was, was just too hard."

"You know, before all this, I've pushed myself really hard to be the best — to be a perfect husband a perfect father, a perfect actor — all these things. I lived with so much fear around that feeling of, 'What if that big job doesn't happen?' 'What if I disappoint so and so?' " Lazar says. "I know what trauma does to you. This is a disease of the nervous system. If I’m running dis-ease through those wires that connect the brain to the body, then how can I really restore ease to my body?”

For more on Aaron Lazar, pick up the latest edition of PEOPLE, on newstands now.