Ed Begley Jr. is optimistic since being diagnosed with Parkinson’s disease

Older television viewers may remember Ed Begley Jr. from St. Elsewhere, an NBC hospital drama that ran from 1982 to 1988. Younger viewers may recognize him from Young Sheldon or Better Call Saul. Environmental activists know him as a longtime advocate for green-living initiatives like solar power, electric vehicles, and reduced carbon emissions. He's famous for powering his toaster with a stationary bicycle in his Los Angeles home, which is certified by the Leadership in Energy and Environmental Design program for using less energy and water.

In his new memoir, To the Temple of Tranquility…and Step on It!, Begley Jr. recounts his experience as the son of Academy Award–winning actor Ed Begley and his efforts to learn the craft of acting rather than rely on his father's fame. Begley Jr. also reveals that he was diagnosed with Parkinson's disease in 2016.

“In hindsight, it started back in the 1990s,” says Begley, 74. “I noticed a slight tremor in my left little finger, but I didn't give it much thought.”

In 2004, he began experiencing a variety of symptoms that seemed unconnected until his Parkinson's diagnosis, 12 years later, put them in perspective. “I started losing my sense of taste and smell, which progressed to about a 20 percent loss,” Begley says. Over the next few years, other challenges emerged. “I had a stiffening pain in my left arm. I tore the Achilles tendon on my left leg getting out of bed and got fitted with a boot. I also found simple actions like sitting down in a restaurant or getting in and out of a car more difficult,” says Begley. “And a fan emailed to ask, ‘Did you have a stroke?’ He thought the left side of my face seemed different. I admit I was a little indignant about that,” the actor jokes.

But despite Begley's various problems and subsequent doctor visits, a diagnosis remained elusive. Unfortunately, such cues are often missed in the early stages of Parkinson's, a progressive disease caused by insufficient levels of the neurotransmitter dopamine. “People recognize in retrospect that they have had some Parkinson's symptoms years or even decades before diagnosis,” says Caroline Tanner, MD, PhD, FAAN, professor of neurology at the University of California, San Francisco. “For example, many people have a reduced sense of smell, which can precede the slowed movement or tremor by decades.”

Other symptoms that can manifest early include constipation and problems sleeping. (Some people experience REM sleep behavior disorder, in which they act out their dreams while sleeping.) “Anxiety or depression, a sense of internal tremor when no tremor is visible, reduced energy, apathy, or subtle changes in movement or thinking can appear years before the full syndrome of Parkinson's,” says Dr. Tanner.

People may attribute certain symptoms, such as a slowed walking pace and a quieter speaking voice, to getting older rather than recognizing them as possible signs of Parkinson's disease, says Richard Krolewski, MD, PhD, instructor in neurology at Brigham and Women's Hospital in Boston.

Even when the word “Parkinson's” came up, Begley used to shrug it off. “I was at a party [in 2012], and a neurologist happened to notice I was dragging my left foot and holding my left hand awkwardly,” he says. “He asked one of my family members, ‘How long has Ed had Parkinson's?’ Of course, my reaction was, ‘I don't have Parkinson's.’ At this point, I was riding my bike for miles in the canyons in L.A. and hitting the gym to lift weights every morning.”

He finally came to consider the possibility of Parkinson's a few years later when a speech therapist at UCLA suggested it. “I went to see her because I'd noticed I was slurring my words. After one session, she looked over my chart and said, ‘I don't see a mention of Parkinson's. I think you have it,’ and she sent me to a neurologist at Cedars-Sinai.”

Begley describes the neurologist's diagnosis—which usually is made after a comprehensive assessment of symptoms, family history, and motor functions—as “instant.” He notes, “By then it was clear, even without a brain scan. I realized I'd been attributing all these symptoms to aging.”

Hear more from Ed Begley Jr.

Ed Begley Jr. joins the podcast to share his unique diagnosis experience, how he has found himself in rooms with Hollywood icons throughout his life, and the diet and exercise regimen that keeps him healthy and working. 

Improving diagnosis

To reduce the incidence of significantly delayed diagnosis, like the one Begley experienced, researchers are seeking breakthroughs in early detection, in the form of either new diagnostic tools or enhanced awareness of risk factors and early symptoms.

One of the new diagnostic methods is a procedure known as a seeding assay. “The assay analyzes cerebrospinal fluid to identify an abnormal increase in the protein alpha-synuclein, a biomarker for Parkinson's, which can be used to confirm the diagnosis along with a DaTscan [a fairly new type of imaging that can identify signs of dopamine deficiency in the brain] and evaluation by a movement disorders expert,” explains Ted M. Dawson, MD, PhD, FAAN, endowed professor of neurodegenerative diseases at the Johns Hopkins University School of Medicine in Baltimore.

Other tools in the pipeline include a skin biopsy that can detect the alpha-synuclein protein associated with Parkinson's disease and a blood test called MITO DNADAX that identifies damaged DNA in the mitochondria (which produce chemical energy), another important biomarker of Parkinson's disease. Neither test has been validated or is commercially available yet, and researchers are still working on them, says Allan Wu, MD, FAAN, professor of neurology at Northwestern University Feinberg School of Medicine in Chicago.

When these new tests are available, people could be diagnosed earlier if they exhibit non-motor-related symptoms such as numbness or tingling, cognitive or memory challenges, anxiety, depression, or loss of smell, says Honglei Chen, MD, PhD, professor of epidemiology and biostatistics at Michigan State University in East Lansing. Or, Dr. Chen adds, they may be diagnosed earlier if they are in a high-risk category, like having certain genetic mutations (mutations in the SNCA gene, for example, which can lead to abnormal increases in alpha-synuclein) or being exposed to environmental toxins or head trauma.

Medication and movement

Since his diagnosis, Begley has tried several medications and is currently taking a time-release carbidopa-levodopa combination, which is easing tremors and stiffness.

He is still physically active. “I hit the gym at 5 a.m. every day, doing all the upper-body circuits,” he says. “I've been an avid cyclist for years. Even with Parkinson's, I ride a bike nearly as hard—but it's now a stationary bike.”

“Vigorous exercise—the equivalent of three and a half to four hours of running or swimming a week—is associated with a 20 percent decreased risk of developing Parkinson's disease,” says E. Ray Dorsey, MD, professor of neurology at the University of Rochester in New York and author of Ending Parkinson's Disease. “For those who already have the disease, increasing evidence indicates that exercise can improve symptoms.”

Begley says he's noticed a bit more tremor, especially when he's nervous, and sometimes his throat tightens up, making it hard to speak. But overall, he says, he's doing well. “I get straight As with my check-ins every six months,” he says, adding, “I know I'll need more help as I go forward. Buttoning my shirt was easier a few years ago.”

For a while after his diagnosis, Begley was hesitant to reveal his illness for fear he'd lose acting jobs. Now, however, he's confident in his decision to speak about it publicly. “I want to help other people going through this, to give them hope,” he says. “I plan to reach out to Michael J. Fox so I can join his army of volunteers.”

It turns out that his concern that Parkinson's disease might have a negative impact on his work was unfounded. “I told my colleagues on Young Sheldon, ‘Thanks for being so patient with my Parkinson's,’ and they said, ‘We didn't even know you had it!’”

Begley knows he's doing all the right things that could help slow the disease's progression. “Parkinson's is my reality now,” he says. “But I've always been successful with things over which I have control. That's what I'm doing—staying active and taking my meds.”