What Lesley Stahl learned from supporting her husband through Parkinson’s disease

Her skills as an investigative reporter—a keen eye for detail, a relentless pursuit of the facts, and a steely resolve—have served 60 Minutes correspondent Lesley Stahl well throughout her decades-long career. More recently, she has applied those same skills to helping her husband, screenwriter and journalist Aaron Latham, manage his Parkinson's disease.

She first started noticing changes in Latham's gait about 11 years ago. "I'm a very slow walker, and his pace was slower than mine," she recalls. "We were on a trip with our daughter and her boyfriend, and she kept saying, 'What's wrong with Dad?'"

Other symptoms quickly followed, including stiffness, tremors, and a few falls, Stahl says. "He's very tall, and when he fell, it was awful. We have a flight of stairs in our house, and he fell down them. He hit his head on the street when he was walking the dog. He was fainting."

After a visit to his doctor and a full neurologic exam, Latham was diagnosed with Parkinson's disease and prescribed carbidopa-levodopa (Sinemet), a combination medication that supplies the brain with dopamine, a neurotransmitter and chemical messenger that is involved with motor function. The depletion of dopamine in the brain is believed to cause symptoms of rigidity, impaired balance, and tremor, says Caroline M. Tanner, MD, PhD, FAAN, director of the Parkinson's Disease Research, Education and Clinical Centers and division chief and professor-in-residence in neurology at the University of California, San Francisco (UCSF).

The medication improved, if not fully alleviated, most of Latham's symptoms, says Stahl. But the diagnosis ushered in a new chapter in the couple's life and one of Stahl's most challenging assignments yet: striking a balance between being a plugged-in health advocate and an empathetic spouse. Latham, who is now 74, prefers to downplay his diagnosis, a decision Stahl respects while still quietly using her professional contacts and skills to pursue innovative treatments. Over the years, they've found a way forward together despite setbacks, the unusual course of Latham's disease, and its inevitable progression.

A degenerative movement disorder

Parkinson's disease is a "neurodegenerative disorder that affects movement and speech," explains Dr. Tanner. Slowness of movement, or bradykinesia, is typical, she says. Other symptoms include tremors, muscle rigidity, and balance and gait problems, which occur on a spectrum of severity. "Every person is different, which can make diagnosis challenging at times," she adds. In addition, other conditions such as essential tremor, Alzheimer's disease, and progressive supranuclear palsy can be mistakenly diagnosed as Parkinson's. Latham's case was all the more challenging because his symptoms and disease course often seemed atypical.

Cause unknown

"Most of the time, we don't know what causes Parkinson's," says Dr. Tanner. "Only 10 or 15 percent of patients have strong genetic determinants, and not everyone who has a gene defect ends up getting the disease. We think it's a combination of genetic predisposition and environment, in most cases. It's a multifactorial disorder."

A disturbing side effect

While carbidopa-levodopa helped to reduce Latham's tremor, rigidity, and fainting, and improved his slower gait, he developed a distressing side effect, says Stahl. "He had this horrible facial tic—really quite disfiguring. He couldn't control it, and it made it hard for him to eat and chew."

He endured the tic until Stahl happened to interview Oliver Sacks, the renowned neurologist who died in 2015, for a panel discussion at the 2012 World Science Festival in New York City. During the discussion, which focused on the ability of music to heal patients with severe neurologic problems, the subject of medication came up.

Dr. Sacks talked about how carbidopa-levodopa gives people tics," Stahl says. "No one had ever said that to us." When Latham, who was in the audience, heard what Dr. Sacks said, he stopped taking his medication, says Stahl—without telling her or his doctor.

Sudden suspension of symptoms

At some point after the event with Dr. Sacks, Stahl noticed an overall improvement in Latham's health—and subsequently learned that he'd stopped taking his medication. The family was on vacation with their daughter, son-in-law, and first grandchild when Stahl noticed that Latham was walking at his old pace, which was faster than hers, and no longer had a facial tic. "He hadn't been able to drive since the summer before. Now he could drive again," she says. "He was completely symptom-free."

For almost a year, Latham remained symptom-free, and the couple began to wonder if he had been misdiagnosed. So they began seeing a new round of doctors. After various misdiagnoses, including West Nile virus and Lyme disease, the couple flew to Boston to seek another opinion. The neurologist they consulted said that it was possible for symptoms to vacillate, but that Latham most likely still had Parkinson's disease and the symptoms would return.

An ebb and flow of symptoms can happen, especially in the early stages of the disease, but it's not typical, says Dr. Tanner. "For 99 percent of people with Parkinson's, the long-term course is worsening, not improving, of symptoms. Withdrawal from medications may look good in the short run, but eventually symptoms return with progressive disability."

To Stahl and her husband's great disappointment, Latham's symptoms did just that. After an unrelated health crisis—a dangerous blockage in his colon—and an operation, Latham's symptoms returned worse than ever, says Stahl. Once again, they were dealing with stiff limbs, a halting gait, tremor, and fainting spells.

Risky business

Given his abrupt discontinuation of his medication, Latham was lucky not to experience serious health consequences, says Dr. Tanner.

"It's not safe to stop carbidopa-levodopa," she says. "Doing so can impair your ability to move, maintain your balance, or even swallow. It can be life-threatening. Patients should always discuss medication with their doctor before making any changes in their dosage."

Dr. Tanner also believes that the severe tic Latham experienced was likely dyskinesia, involuntary movements that can happen anywhere in the body, including in the face, in people with Parkinson's disease.

Still writing

For Latham, who penned the Esquire article and screenplay that became the 1980 film Urban Cowboy, the physical symptoms of Parkinson's disease have been professionally challenging. Typing has become increasingly difficult as his tremors and rigidity worsen. And his once "lovely cursive" handwriting is now "scratchy and pinched," says Stahl.

"He's semi-retired, but he continues to write; it just takes longer now," she adds. He's also started directing plays, which, his devoted spouse says, "he's really good at."

Staying strong

Always on the lookout for new ways to slow the progression of her husband's condition, Stahl took action when her son-in-law tipped her off about Rock Steady, a boxing therapy specifically for people with Parkinson's disease, in 2015.

Ever the investigative reporter, Stahl researched the fledgling program and encouraged Latham to give it a try. She was concerned that her husband's symptoms, which were advancing incrementally with each passing year, were robbing him of his easy self-assurance and his ability to perform activities he once took for granted, such as running errands around New York City.

Latham joined Rock Steady, recently renamed StoPD, at the famed Gleason's Gym in Brooklyn, NY, where the late Muhammad Ali—who also had Parkinson's disease—once trained. The intensive boxing workouts are designed for Parkinson's patients of all ages, stages, and abilities.

A left hook to Parkinson's

"From the very beginning, boxing had a dramatic, positive effect on Aaron," enthuses Stahl, who filmed a segment about the program for CBS Sunday Morning in 2015 that continues to be shared online. "It not only helped Aaron physically [with the stiffness and tremors], but it did a lot for his confidence. He goes religiously, twice a week."

"Boxing incorporates different elements that are critical to Parkinson's disease—strength, stamina, flexibility, endurance, and balance—all at once," says Adolfo Ramirez-Zamora, MD, associate professor of neurology at the University of Florida in Gainesville. "Other types of exercise may target cardio, but not necessarily balance and flexibility." But exercise in general helps people with Parkinson's, he says. "It has a global effect, with most symptoms—mood, mobility, concentration, and balance—showing improvement."

That's because exercise impacts brain chemistry, he says. "We suspect that the release of several neurotransmitters in the brain during exercise may be helpful for brain remodeling and brain plasticity, improving symptoms of Parkinson's disease such as pain, discomfort, and mobility troubles. Additional research is needed to fully understand the effects of exercise on the disease."

Tailored exercise

One of the advantages of boxing is that it can be tailored to the specific needs of each patient, says Dr. Ramirez-Zamora. "Even someone sitting in a wheelchair can still punch the bag."

Exploring deep brain stimulation

Shortly after her husband began boxing, Stahl says several friends told her about deep brain stimulation (DBS) surgery. As with boxing, she immediately researched the procedure, in which a lead is wired under the skin to a special pacemaker implanted into the chest. Post-surgery, the pacemaker is adjusted to deliver electricity to the brain.

The electricity is delivered to the thalamus, the subthalamic nucleus, or the globus pallidus interna in the brain, says Michael H. Pourfar, MD, assistant professor in the departments of neurosurgery and neurology at NYU Langone Medical Center. "There's some debate as to how DBS works," he explains. "One theory is that stimulation overrides abnormal signaling and replaces it with a kind of 'white noise.' The actual impact on the surrounding brain is rather complex, but the net effect is a circuit functioning closer to normal."

DBS is most effective for specific motor symptoms such as tremor, rigidity, slowness, and gait, Dr. Pourfar adds. "It helps reduce dyskinesias—abnormal movements related to medications—and helps even out the fluctuations that commonly occur in more advanced Parkinson's disease. In general, DBS tends to replicate the best response to medications, but in a more consistent way. It's particularly good for people who continue to have a good response to the medications but in a less reliable fashion over time."

Still, "DBS can have adverse effects," he warns, "particularly on speech. This is often reversible, or at least modifiable, by making adjustments in the stimulation settings." An advantage to DBS is that the stimulation can be adjusted to address side effects or changes in symptoms, he says. The one symptom it does not help is balance. "In some cases, DBS can worsen balance, but this, too, can often be dealt with by adjusting the settings."

Surgery success

Stahl says her husband was not considered a candidate for the procedure initially. After undergoing a PET scan at Mount Sinai, Latham was told that the areas in his brain that needed activating couldn't be helped by electrodes. "I was devastated," says Stahl. "By that point, Aaron had a very pronounced tremor. He was very stiff. I was crushed."

Stahl may have been disappointed, but she wasn't defeated. Once again, she and Latham returned to Boston, where Latham's neurologist steered them toward a neurosurgeon at NYU. "The surgeon said Aaron was an appropriate candidate for DBS. He got it, and it helped a lot," says Stahl. "That was two years ago. He doesn't have any tremor now, whatsoever. He's not stiff. He still takes Sinemet [carbidopa-levodopa], but at a much-reduced dose."

Although DBS helped Latham, the procedure is not for everyone, Dr. Pourfar says. "DBS is usually reserved for patients who have had Parkinson's disease for at least four or five years, although there are exceptions [including people with] severe, medication-refractory tremors." For people who have a specific symptom that doesn't respond to DBS, the surgery might not be appropriate, he says. "Significant cognitive impairment, severe depression, and other serious medical conditions are also potential contraindications. There is no specific age limit at our center, but as patients move into their eighties the risks increase, and those patients need to be considered on an individual, case-by-case basis."

Stahl controls the amount of electricity delivered to Latham's brain—within safe limits set up by his neurologist, who trained her in how to adjust the strength and frequency—through a special iPhone app. "It's wonderful," Stahl says of this new technology. "He doesn't have to run to the doctor every time his pinky starts twitching."

Given her husband's positive experience, Stahl encourages others with Parkinson's disease to research DBS surgery to see if they are candidates. If so, she urges them to go for it. "I tell anyone who hasn't undergone DBS to talk to their doctor about it."

She also makes a point of broadcasting her and Latham's experiences with innovative therapies, both on television and behind the scenes. While Stahl doesn't belong to any support groups, she does seek out other spouses going through similar health challenges. "If I meet another wife at a dinner party who has a husband with Parkinson's, we'll go into the corner and talk. And it's a very, very helpful thing to do—for both of us."

Inevitable progression

Latham remains mobile enough to move about without a cane or wheelchair, and he doesn't require in-home nursing, but his disease continues to progress. "It's attacked his voice [recently]," says Stahl. "He's had voice therapy, but it really didn't help much." He can no longer drive and gets around with the help of car ride services. "He used to take the subway to go boxing. Not anymore. He used to walk the dog twice a day. He can't do that either."

Stahl considers herself a supportive partner, but she doesn't see herself as Latham's full-time caregiver. "I don't think of myself that way—not yet," she says. Her approach of pursuing the best health care available for him while not dwelling on his disease works for them, she says.

Lessons learned

In the 11 years since his diagnosis, Stahl and Latham have formed an effective partnership, relying on their individual strengths—something Stahl suggests others do too. "No two experiences, friendships, or marriages are the same. You're dealing with your own personality, and with theirs. Everybody deals with it differently. Aaron was basically ignoring it, so I figured that's what he needed from me. So I said to him, 'We can handle it. Make sure you take your medicine.' And that was it. Aaron doesn't want to face it as much. That's just his personality."

She has made adjustments along the way, however. Recently, she's changed the way she travels. If she takes a business trip any longer than three or four days, Latham comes with her. Stahl says she used to worry about leaving him at home; when he's with her on the road, she's a lot more relaxed. "Even my producers notice that I'm calmer," she admits.

A boost from grandchildren

Latham's symptom-free period from Parkinson's coincided with the first year of life for Jordan, the couple's oldest grandchild—a happy overlapping of events, as Latham was able to hold the baby without struggling with tremors or stiffness.

These days, Stahl and Latham continue to be devoted grandparents to both 7-year-old Jordan and her younger sister, 4-year-old Chloe. Stahl even wrote a book—Becoming Grandma: The Joys and Science of the New Grandparenting (Blue Rider Press, 2016)—about the amazing power of grandchildren, and how love for them can alter the hearts of older, sometimes world-weary adults. "Just when you think your days of falling madly in love are long past, you find yourself looking down at that baby, going limp," she writes.

Stahl and Latham regularly fly to California, where their daughter and her family live, for lengthy visits. They also take shared vacations and say they wouldn't dream of missing their much-anticipated weekly video chats with the grandkids.