As the mild-mannered, downward dog-loving Erica "Yoga" Jones on the award-winning Netflix series Orange Is the New Black, Connie Shulman is the calm amid a very chaotic storm. The spiky-haired, wide-eyed yogini with the lazy Southern drawl is often the voice of peace, trying to help her friends survive the bleakness of prison with as much dignity as possible.

In real life, Shulman helped a friend manage another kind of prison.

Laury Sacks was an acquaintance whom Shulman remembers as a "great-looking girl, wearing beautiful, funky, bohemian clothes. She was always the center of the group, always laughing."

But that wasn't the woman Shulman came to know. The Sacks she met in 2005, a 49-year-old actress, writer, and mother of two young children, seemed not quite...there.

The two had met in New York when Sacks' daughter, Talley, attended kindergarten with Shulman's daughter, Augusta, and grew friendly while their children played in Shulman's Upper West Side apartment. Sacks would stay and drink tea with Shulman, but the conversation always felt one-sided. "I'd say, 'How's your husband?' And she'd say, 'Eric good,'" Shulman recalls. "I thought maybe it was her version of banter. Or maybe she just wasn't interested in starting a friendship. When you kind of know somebody from a distance, you're more apt to think, 'It's me.'"

Shulman was so unmoored that she eventually asked another friend of Sacks', Nicole Quinn, if Sacks was having some kind of medical problem. Eyes brimming, Quinn confessed that, yes, something was wrong with Sacks. Her doctors were considering several diagnoses, including Alzheimer's or Parkinson's disease, or maybe a stroke.

Stumbling Toward a Diagnosis

Sacks, who was slowly forgetting words and losing the ability to hold conversations, began rounds of doctors' appointments and neurologic testing. Eventually she received a diagnosis: frontotemporal dementia (FTD), or frontotemporal lobar degeneration, an umbrella term for a group of fatal neurodegenerative diseases that cause progressive dementia in adults, generally before age 65.

The disease, which damages brain cells and shows up on scans as microscopic brain abnormalities, is associated with shrinkage of the orbitofrontal and temporal anterior lobes, areas of the brain involved in decision making and recalling names of objects, places, and things. First described about 100 years ago by Arnold Pick, a Czech neurologist and psychiatrist, "Pick's disease," a type of FTD, may be mistaken by doctors for Alzheimer's disease, Parkinson's disease, or a psychiatric disorder.

FTD usually manifests in one of two ways: as a behavioral syndrome, causing changes in behavior and personality, or as a language disorder, affecting speech, word comprehension, and memory. In about 10 to 20 percent of cases, people with FTD may experience movement problems similar to those associated with Parkinson's disease or amyotrophic lateral sclerosis (ALS). For Sacks, the disease manifested as a language disorder.

Facing Dementia with Courage

The diagnosis was devastating, says Sacks' husband, Eric, but Sacks never shrank from it. "It was always surprising to me that she never felt sorry for herself, never wanted to go to a corner and hide," he says. "She just wanted to continue to be who she was and live as she had been living."

Life before the diagnosis was full of laughter and affection. "She had a comedic flair in her attitude toward life," Eric recalls. "A show like I Love Lucy was so much in her DNA."

And she brought those qualities to her parenting. "Laury was a very determined, demonstrative mom. When she saw that things could be different at the children's school, for example, she had her way of getting her point across."

As the disease progressed, life in the Sacks household changed considerably. There were more silences, and as her thinking grew more muddled, her agitation increased.

Understanding the Disease

Sacks' friends were stunned to learn about her condition. "There were so many other things you'd have thought first—that she was on drugs, had a stroke, was depressed, or was withdrawing because of a midlife crisis," says Shulman. "You'd never think a woman her age would have dementia."

But FTD is different, with an average age of onset between 55 and 65, says Thomas Wisniewski, MD, PhD, director of the Center for Cognitive Neurology at New York University Langone Medical Center and a member of the American Academy of Neurology (AAN). "FTD is as common a cause of dementia in patients younger than age 65 as Alzheimer's is in people older than 65," he says. An estimated 100,000 to 250,000 Americans are living with the condition.

Although FTD affects the frontal lobe, which regulates executive functions such as the ability to multitask, make good judgments, and be attentive, it does not usually affect memory. Most people exhibit behavioral problems like apathy, withdrawal, disinhibition, and distractibility. Some also have trouble responding to everyday cues like knowing when it's time to use the bathroom. In Sacks' case, because she was forgetting even basic words like "bathroom," and because the disease disrupted the signal from her brain to her bladder, she often wet her pants. "Her urologist said this was very common in patients with advanced FTD," says Eric.

Filming a Journey

Casting about for a way to help, Shulman asked Eric what she could do. His response: Keep his wife engaged and stimulated. That planted the seed for what would eventually become a movie about Sacks' illness. In fact, it was Sacks who introduced Shulman to her longtime friend, documentary filmmaker Pamela Hogan, with whom Shulman would collaborate.

Hogan, too, had noticed gradual changes in conversations with Sacks. When they went out for coffee, for example, Sacks wouldn't say much. Instead, she simply nodded her head and repeated words. Hogan would ask her if something was wrong. "She would say, 'I'm just in my head,'" recalls Hogan.

For a year, Shulman and Hogan followed Sacks around with a camera, filming her daily jaunts in Manhattan. It wasn't easy, mainly because Sacks was unpredictable and a fast walker with a lot of restless energy. The combination proved to be a "challenging tap dance," says Shulman with a slight laugh. "It was a real rollercoaster. She'd hop out of cabs. I suddenly understood why some parents keep their kids on leashes."

At the start, Hogan and Shulman hoped their film would document their friend's recovery. "I wanted to make a film about an incredible woman who got better after being very sick," says Hogan. When that was not to be, the footage that became the documentary Looks like Laury, Sounds like Laury served as an homage to their beloved friend, a memento for her family, and a tool for raising awareness of FTD.

When viewers first meet Sacks in the film, it's clear that she understands everything but just can't express herself. And although words escape her, lyrics to certain songs do not. In one scene, for instance, she sings "Had You Been Around," a song popularized by Diana Ross, while her friend plays the piano. But as the film continues, even that ability fades. "Laury was still in there, but you had to look a lot deeper and then you'd get a glimmer," says Hogan. Her cognition declined, and she began doing things that were completely out of character—like the time she took a wad of bubble gum out of her mouth and handed it to Hogan. "She was done with the gum," says Hogan. "And I was there. So she gave it to me."

Rallying Around a Friend

For Shulman, watching someone she loved disintegrate also took an emotional and mental toll. Every time she forgot a word or misplaced an item, she became convinced that she, too, had FTD. "I don't think you can go through something like that without thinking it's happening to you, whatever the medical problem is," says Shulman. "This was affecting someone our age. It's a very scary disease."

It was also lonely for everyone involved, says Shulman. "Laury was losing bits and pieces of herself. She was so isolated. If there was ever a disease where you need a community of friends, this is it. Laury was shut down in the prime of her life."

After a year of shooting, Shulman and Hogan stopped filming. Sacks was simply too ill. Her family moved her into a nursing facility, and she died two years later at age 52. Her family donated her brain to the Taub Institute for Research on Alzheimer's and the Aging Brain in New York City.

Sharing Laury's Story

In March, Looks like Laury, Sounds like Laury was shown nationally on America ReFramed, a program on the World Channel, a television station sponsored by American Public Television that showcases personal documentaries about American lives. In April, a five-minute clip from the hour-long documentary won second prize at this year's Neuro Film Festival, presented by the AAN and the American Brain Foundation at the AAN Annual Meeting in Washington, DC. Hogan and Shulman hope that honor will raise even more awareness of FTD and perhaps lead to better diagnosis and treatment. (For more about the 2015 Neuro Film Festival and to watch this year's submissions, including the clip from Looks like Laury, Sounds like Laury, visit neurofilmfestival.com.)

Although Shulman never knew Sacks before she developed symptoms, she recalls a friendship filled with laughter, even while Sacks was declining. She believes that Sacks, who had a brilliant sense of humor, grasped the absurdity of the situation. "To be able to develop a friendship with someone under her circumstances is remarkable," Shulman says. "I will remember that year as laughing so hard. Laury wasn't crying. To me, she was this kind of happy/sad clown. Mostly the happy clown. She was up for the journey, up for the game, always there with this huge smile until the end."

Frontotemporal Dementia: The Basics

WHAT IS FRONTOTEMPORAL DEMENTIA?

Frontotemporal dementia (FTD), a disease that damages brain cells, is associated with the shrinking of the frontal and temporal anterior lobes of the brain. Patients with FTD have an accumulation of toxic proteins in their brains, says Brad Dickerson, MD, director of the FTD unit at Massachusetts General Hospital, an associate professor of neurology at Harvard Medical School, and a member of the American Academy of Neurology.

FTD is often misdiagnosed as Alzheimer's disease, Parkinson's disease, or a psychiatric disorder. It affects about 15 to 22 people per 100,000, according to a 2013 report from the International Review of Psychiatry, and the average lifespan after symptoms develop is about two to 10 years.

WHAT ARE THE SYMPTOMS OF FRONTOTEMPORAL DEMENTIA?

Symptoms include behavioral changes (individuals appear apathetic, withdrawn, disinhibited, and distractible) or language problems (manifesting as difficulty speaking or understanding others, called aphasia).

WHAT ARE THE CAUSES OF FRONTOTEMPORAL DEMENTIA?

The causes of FTD are unknown. About 30 to 50 percent of cases have a family history of a related disease, but only about 10 percent of those cases are caused by a single gene known to confer a 50 percent risk to first-degree relatives, says Jill Goldman, a genetic counselor at the Columbia University Medical Center's Taub Institute for Research on Alzheimer's and the Aging Brain.

HOW IS FRONTOTEMPORAL DEMENTIA DIAGNOSED?

Behavioral changes may occur long before any noticeable brain changes. Typically, doctors do neurologic evaluations, as they would for any type of dementia: Is the patient forgetting things? Is he losing his car keys? Does she seem aloof or have trouble at work?

Since some cases are inherited, it is also possible to be tested for it. "If you are already symptomatic and you have a family history, it can be important information for other family members," says Goldman. "It can also narrow down the diagnosis."

WHAT TREATMENTS ARE AVAILABLE FOR FTD?

There is no known treatment or cure for FTD, but clinical trials of experimental drugs are beginning. Visit ClinicalTrials.gov for more information.

WHAT RESEARCH IS BEING DONE ON FTD?

Scientists have recently begun to understand the molecular mechanisms involved in FTD and have discovered a genetic link between FTD and amyotrophic lateral sclerosis (ALS), which has inspired both research communities to work together. Also, the National Alzheimer's Plan Act (napa.alz.org ), which was signed into law in 2011, explicitly includes Alzheimer's-related disorders such as FTD, which means more money is now available for research.

In the fall of 2014, the National Institutes of Health granted $30 million in grants to FTD researchers to use in three ways: to establish clinical networks to understand, diagnose, and treat the condition better; to find people who carry gene mutations for the disease and recruit them for studies; and to investigate a specific genetic mutation that contributes to both inherited FTD and inherited ALS.

Where to Get More Info

The following organizations can provide support, updates on clinical trials, and information about how to donate a patient's brain to help further research about frontotemporal dementia:

• The Association for Frontotemporal Degeneration: theaftd.org; 866-507-7222; children and teens with parents affected by the disease can visit aftdkidsandteens.org
• The Bluefield Project to Cure Frontotemporal Dementia: bluefieldproject.org
• National Institute of Neurological Disorders and Stroke (NINDS): ninds.nih.gov; 800-352-9424; 301-496-5751
• Frontotemporal Dementia Support Group: ftdsupport.com
• Massachusetts General Hospital Alzheimer's Disease Research Center Neuropathology Brain Bank: madrc.org
• The Taub Institute for Research on Alzheimer's and the Aging Brain: cumc.columbia.edu; 212-305-2299