The diagnosis of a chronic neurologic condition can be life-changing in many ways. For some people, it inspires them to become advocates for causes related to their disorder, using their own experiences and insights to help make life better for others with the same condition.

Svetlana Blitshteyn, MD, FAAN, a neurologist specializing in autonomic disorders, is the director and founder of the Dysautonomia Clinic in Buffalo, NY, where she works with people living with various chronic neurologic conditions—including postural orthostatic tachycardia syndrome (POTS), myalgic encephalopathy/chronic fatigue syndrome (ME/CFS), and chronic migraine—and long COVID. Serving on the medical advisory boards of many national advocacy organizations related to these conditions, she has seen firsthand how getting involved with these groups can benefit people. Chronic neurologic illness “is a severe stressor,” she says.

These illnesses can occur with mental health problems that may stem from persistent grief. Because chronic illness is often life-altering, Dr. Blitshteyn says, “It's common for people with chronic neurologic conditions to experience a profound sense of sadness and loss over their old life and healthy self.” Getting involved in a cause in response to a diagnosis can be psychologically helpful, she adds, and anything that benefits your mental well-being is good for your physical and brain health, too. “Helping others, connecting with other people who are going through similar experiences, and doing something positive to promote change is a good way to do that,” Dr. Blitshteyn says.

Finding New Words

Gwynn Dujardin, PhD, did just that after her life changed in 2015. While teaching a class at Queen's University in Kingston, Ontario, she started experiencing puzzling symptoms and thought she was having a stroke. At first, the language and literary historian and now-retired professor of early modern literature couldn't hear her students speak. Then, she couldn't understand them and started mixing up their names.

“But when I went to the emergency department, they attributed my symptoms to anxiety and stress related to being a single parent of two teenagers,” says Dujardin, now 57.

Her condition worsened over the next year, to the point where she could not get out of bed. Doctors subsequently diagnosed her with ME/CFS, a complex neurologic and immunologic condition that affects many parts of the body.

“The hallmark symptoms of ME, like cognitive problems and memory loss, attack the things most needed for a career in academia,” she says. “Aphasia—difficulty finding words—was one of my first symptoms and continues to be a major problem. I was an English professor who specialized in the history of the language and was unable to find my own words.”

Another common symptom is orthostatic intolerance—lightheadedness, blurred vision, and dizziness when standing up or sometimes even just sitting up. Dujardin says this impaired her ability to think and speak.

She went on sick leave in 2016, and three years later, without any improvement in her condition, she lost her Canadian work visa and returned to the United States, left to raise her kids with no job or health care. Relocating to Maryland, Dujardin threw herself into activism around ME, a long-stigmatized condition that has received little research funding.

“I realized that I was going to be living with this forever, and the only way I could move out of a really dark space was to commit myself to using the skills and abilities I still have to help others,” she says.

In 2020, Dujardin joined a Maryland chapter of the national advocacy group ME Action, where she learned how few resources existed for her condition. She started using her teaching skills to educate the public and medical professionals and served as the community and medical action lead at ME Action/Maryland. She built a reputation as a nationally known advocate for ME, speaking at Johns Hopkins University and to government agencies and senators’ offices and serving on a panel advising the National Institute of Neurological Disorders and Stroke on setting research priorities for the condition. In 2023, she collaborated with author Ed Yong on “Fatigue Can Wreck You,” an article about ME for The Atlantic, and is now writing a book about the culture of fatigue.

“So much of the emotional challenge about having ME is not just the devastating symptoms and their impact on my life but also the challenge of dealing with the cultural stigma around this illness,” Dujardin says. “It is so satisfying to represent patients’ lived experiences of this.”

Living with Intention

Bart Narter came to understand that challenge, too. A senior vice president at Celent, a technology research firm for financial institutions, he was on track in 2011 to become the next head of the company. “I loved the job and had great respect in the industry.… I was ready to work there until I retired,” says the San Francisco Bay Area resident.

One wet and cold September day, Narter was on a training race for an endurance cycling event when his left arm began to shake uncontrollably. “Other times when I had been climbing hills, I'd noticed little half-second twitches in my left arm and thought it was just a pinched nerve,” he recalls. “This time, I knew it wasn't a pinched nerve.”

He embarked on a two-month journey to find the cause of his symptoms, visiting a physical therapist and orthopedic surgeon before a neurologist finally diagnosed him with Parkinson's disease that December, just after he turned 50. “By that time, I was noticing other symptoms, like urinary incontinence, as well,” says Narter, who once had to leave the podium during a speech to use the bathroom.

In January 2012, Narter gave his boss a year's notice to find his replacement. “I saw two choices: I could hang onto my job as long as I could and then take a demotion, or I could step out as a senior vice president and focus on my health. I chose the latter,” he says. As he figured out what to do next, he found the perfect match for his skills and passion in the Davis Phinney Foundation for Parkinson's, established by Olympic bronze medalist and Tour de France stage winner Davis Phinney, who was diagnosed with young-onset Parkinson's in 2000 at age 40.

“The foundation's focus is not on curing the disease but on teaching you to live well with it,” Narter says. He became an ambassador for the foundation in the Bay Area, doing speaking engagements and meeting with recently diagnosed patients who needed help navigating the medical system. For several years, he also led the Willow Glen Parkinson's Support Group, one of the largest in the Bay Area, where he brought in expert physicians as well as representatives from pharmaceutical and medical device companies.

Living in the Bay Area also means he has access to major medical research centers, including Stanford University; the University of California, San Francisco; the University of California, Berkeley; and San Francisco VA Medical Center. “I decided to participate in research as a way to move the field forward, and so far, I've enrolled in between 55 and 60 studies,” he says. “Some are just questionnaires, but some are more substantial and involve things like getting a spinal tap every visit for the Michael J. Fox Foundation's Parkinson's Progression Markers Initiative,” a study of how brain disease starts and changes and how it can be stopped.

Three years ago, Narter married his longtime partner, and he and his husband also travel, most recently to Australia. “I've just been enjoying life a great deal,” he says. “There is, of course, the downside, which is the disease itself. There are all kinds of different problems you can have.”

Narter underwent deep brain stimulation surgery to help treat his Parkinson's symptoms in 2016 and 2020, and his symptoms are now better controlled. He feels grateful for his medical care and the emotional support his family provides. “My life could be far, far worse,” he says.

Spreading HOPE

Cindi and Larry Stockers’ lives changed forever in May 2017, when Cindi fell, hit her head on concrete, and developed a traumatic brain injury. Then 58, the former regional sales manager for a funeral services company spent the next year in different hospitals and rehabilitation facilities and had multiple surgeries. Her husband left his job as a marketing director at a steel fabrication company near their home in Topeka, KS, to become her full-time caregiver. But when it came time for Cindi to leave the hospital and continue her rehabilitation at home, Larry hesitated.

“I was scared half to death,” he says. “I didn't have a discharge plan—just a big folder full of hospital paperwork. Would I be ready? Could I do this alone? I had no clue. But finally, I just told myself, ‘You've got to figure it out.’”

Once home, the Stockers built on a routine Larry had devised when Cindi was first in the hospital. Every morning, the nurses would ask her the same routine questions to check her awareness, vitals, and overall condition. Larry decided that these questions were too typical and uninspiring, so he used the skills he'd developed in his 35-year career in advertising and marketing to create a new, more challenging set of daily prompts to help Cindi stretch her mind.

“I got seven pieces of white paper and came up with a word for the day for each day of the week,” he says. “Monday's was ‘go,’ Tuesday's was ‘determination,’ Wednesday's was ‘attitude,’ and so on.”

He taped the words on the wall so Cindi could see them from her hospital bed, and each morning he'd ask her what the word of the day was and what it meant to her at that moment—a way of inspiring her to start the day. “Seven years later, we still do it as part of our home rehab routine,” she says.

Eighteen months after her injury, the couple were anxious to return to work, but Cindi now was disabled and needed Larry to care for her 24/7. They channeled their energy instead into creating what they dubbed the HOPE (Home Option Patient Experience) Program, a vivid, colorful guide to ongoing recovery for homebound patients with traumatic brain injuries who have spasticity and severe movement disorders. The journal-based worksheets (offering plenty of examples) include Larry and Cindi's words of the day, advice for communication and self-advocacy, and lists of tough questions to ask about the patient's home rehab. The guide “is for everyone who needs a little nudge to get started at home,” they say.

“When you are discharged from the hospital, they're going to tell you what your schedule is going to be to come in for outpatient physical and occupational and speech therapy,” Larry says. “But there's nothing to guide you through the emotional rollercoaster of coming home. That's what the HOPE Program is for.”

‘Try to Make a Mark on the World’

The first thing Allison Moore's grandmother asked shortly after Moore, now 59, was born, was, “How are her feet?” Her father's family had a history of issues with their legs and feet—including an uncle who had issues walking from polio—but as far as anyone could tell, Moore's feet and legs looked just fine.

Nearly three decades later, in 1995, Moore was newly married, pursuing a demanding job in insurance sales in New York City, and training for the New York Marathon when she began experiencing sensitivity in her hip. After several doctor visits, she was diagnosed with synovial sarcoma, a rare cancer that tends to occur near large joints, mainly the knees, and more often in young people. She underwent an aggressive chemotherapy regimen, which brought on rapid-onset severe neuropathy.

“I went from running, skiing, rollerblading, [and] running around the city in high heels to [being] disabled in six hours. I developed bilateral foot drop and hand issues,” she says. “At first, they told me it was just a bad side effect from the chemotherapy, and it would get better.”

Moore did not recover, however, because what neither she nor her doctors realized was that Moore had a genetic predisposition to the neurologic disorder Charcot-Marie-Tooth (CMT) disease. CMT is one of the most common inherited nerve disorders, with symptoms ranging from mild to severe and including muscle atrophy; deformities in the feet, legs, arms, and hands; frequent falling and tripping; vocal cord paralysis; and scoliosis. They can appear at any time from childhood through adulthood; Moore had not had any prior signs of CMT.

A recurrence of the sarcoma a year later derailed her search for answers. She decided to forego chemotherapy and instead underwent extensive radiation and physical therapy. “Sarcomas are typically lethal cancers,” she says. “I made a deal with myself: if I live, I'm going to make it count. I'm going to do something important with my life.”

About a year after successfully completing treatment for the recurrence, visits to multiple neurologists finally yielded the CMT diagnosis. By that time, Moore was pregnant with her son Christopher, now 26 (she also has a second son, Thomas, 23). Learning that she had an inherited neurologic disorder—one chemotherapy had exacerbated—inspired her to focus on healing and leave her career in insurance.

“I took some time to heal emotionally and physically, through art therapy and guided imagery, meditation and yoga, and physical therapy,” says Moore, who wears heavy braces on both legs and has significant atrophy in her hands. “And through that I realized that I just wanted to help people who were in the same situation, so I decided to create a nonprofit.”

In 2001, she launched the Hereditary Neuropathy Foundation, an organization dedicated to supporting people with CMT and other inherited neuropathic conditions. “I was knocking on doors, and calling people, and talking to doctors, and trying to find other patients, and putting out advertising,” she recalls. “At first, we were mostly a membership organization and focused on awareness and education, but over time, I realized that there really was not a lot going on for CMT on the research side.”

In 2007, the foundation formed its Therapeutic Research and Accelerated Discovery (TRIAD) program, a collaborative effort with academia, government, and industry to develop treatments for CMT. Over the next 17 years, the foundation became a major driver of research in CMT genetics and therapeutics and developed the Global Registry for Inherited Neuropathies (GRIN) in 2013 to conduct patient-focused research and development for treatments and cures. “We became experts in bringing the patient's voice into drug discovery,” Moore says. “We always put the patient first.”

Having a condition like CMT can be a lonely experience, she says, “but the gift of advocacy is that it empowers me to feel okay with what I have. You can just live your life, or you can try to make a mark on the world.”

A Functional Approach

Amanda Hopper's younger child, El, periodically experienced migraines and other random illnesses during elementary school that doctors attributed to dehydration, heat, or a “sensitive nervous system.” But when El, who uses the pronoun “they,” was 14 and a freshman in high school in Boone County, KY, the situation rapidly worsened. After experiencing spasmodic head movements, El went to Cincinnati Children's Hospital and was diagnosed with psychogenic non-epileptic seizures (PNES), or functional seizures. Although PNES may look like epileptic seizures, they are not linked to abnormal electrical activity in the brain but rather a problem in the way the nervous system responds to stressors.

“After that, the symptoms escalated. El started having paralysis in their legs, and then full-body [convulsive attacks], and episodes where they lost track of time,” says Hopper, 47. “We went back to Cincinnati Children's and asked, ‘Is this all PNES?’”

Doctors ultimately diagnosed El with functional neurological disorder (FND), a “condition caused by changes in how brain networks respond to stressors, rather than changes in the structure of the brain itself, as seen in many other neurological disorders,” according to the National Institute of Neurological Disorders and Stroke. FND are among the most common problems evaluated in a neurologist's office, but they remain poorly understood.

Hopper and her husband spent hours on the phone and bounced from hospital to hospital across the country trying to find treatment for El. Nothing seemed to help until they found the Boulder Center for Neuro Health in Colorado, a center specializing in FND that is directed by neuropsychologist Afra Moenter, PhD. El spent six weeks there in an intensive, multidisciplinary outpatient therapy program that combined physical therapy, mindfulness practices, psychotherapy, and approaches to understanding and regulating the nervous system and its response to stressors. Most people with FND undergo “talk therapy,” with evidence backing the use of cognitive behavioral therapy or dialectical behavior therapy. Clinicians may also prescribe antidepressants or anti-anxiety medications since mood and anxiety disorders are common in people with FND.

“FND involves a dysregulated nervous system, and to improve symptoms, it is helpful to have the tools to restore balance to your nervous system,” Hopper says. “That was by far the most helpful thing we did.”

At that point, Hopper had decided to leave her career as the assistant director of the Boone County public library to support and homeschool El full-time. She found a community resource in FND Hope, the first global charity for people with the condition. The organization, established in 2012, provides peer support, webinars, videos, and other resources for people with the disorder around the world. “After that, my eyes were really opened to the FND community,” Hopper says. “Because of the turmoil we had seen our child go through, not having any place to turn to or any answers, my husband and I both decided to dedicate our time to the organization.”

She had only been involved with FND Hope for a few months when the position of executive director opened. “I said, ‘You know what? I have the background, I have the skills, I have the time, and I feel so passionately about this,’” recalls Hopper, who spent her entire career in the nonprofit world and also launched a family-based nonprofit, Stormcells Inc., which supports charities and small businesses in the Cincinnati area. In 2022, she took over as FND Hope's executive director and later added the position of COO for FND Hope International, which supports FND charities and volunteers in other countries. She also works as an administrative consultant for FNDcourage, a nonprofit that Dr. Moenter and other FND specialists created that provides education, courses, and retreats for people with FND and their care partners.

In December 2024, Hopper left her role with FND Hope for a position much closer to home: grandma. El's older sister, Macie, had a baby girl Hopper watches full-time. “But she won't be a baby forever,” Hopper says, “and I will continue my role in the FND community and will still be working part-time with FNDcourage and supporting Dr. Moenter in her work.”

“If I can bring some kind of good out of what has happened to our child and our family, and not only help them but so many other people, I feel very blessed to be able to do this work,” Hopper says.

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