How well patients progress after a diagnosis of a neurologic disease often depends on the strength of their medical team—the interdisciplinary group of specialists who coordinate day-to-day care. Typically, this group is part of a clinic, such as a neuromuscular clinic or a memory diagnostic center, within a larger medical facility or academic hospital. Here's what we learned from two patients and their families about interacting with various members of their care teams.

Patient: Willie Tresz Jr.

Age: 22
Disorder: Duchenne muscular dystrophy
Hometown: Akron, OH

Willie Tresz Jr. was diagnosed with Duchenne muscular dystrophy (DMD), a rare genetic syndrome that causes progressive muscle degeneration and weakness, when he was 5. Until recently, most people with DMD would not survive past their teens. But thanks to medical advances, many are living relatively full lives into their thirties and beyond.

Tresz is no exception. Elected homecoming king his senior year in high school, he hoped to attend college or work independently, but the progression of his disease prohibited that. Yet he still felt ready to move out of his grandparents' house—where he was raised—to live as much as possible on his own. He now resides in a group home in Akron, where he receives 24-hour care paid for by Medicaid. His insurance also covers his wheelchair and medical supplies. A state waiver pays for his housing and transportation, and he receives food stamps.

"I may need a wheelchair and have a tracheotomy and a ventilator, but that doesn't stop me from doing what I want to do," he says. Among his favorite activities are hiking on wheelchair-friendly trails, attending rock concerts, and performing in a community theater troop geared for adults with disabilities.

Tresz has been a patient at Akron Children's Hospital but is transitioning to an adult clinic later this year for some of his care.

Neurologist: Ian T. Rossman, MD, PhD

Most patients with DMD, which primarily affects males, are referred by their primary care physicians to a neurologist when symptoms first appear. The neurologist will order a muscle biopsy and genetic testing to confirm the diagnosis and then coordinate interdisciplinary care, including a pulmonologist (for disorders of the lungs and muscles that control breathing) and a cardiologist (for any heart problems). The neurologist also ensures that the patient receives supportive therapies. Neurologists generally see patients once or twice a year, when they measure strength, range of joint motion, and motor function. They also monitor patients' overall health, prescribing vitamin D and calcium as necessary to maintain bone density and treating any coexisting conditions, such as migraines or seizures. If appropriate, neurologists also prescribe medication, like corticosteroids to improve muscle strength and possibly delay progression.

Dr. Rossman has been Tresz's neurologist at Akron Children's Hospital for about two years. The first time they met, Tresz had just been released after a three-month hospitalization for pneumonia that turned into life-threatening sepsis. "Talking to him, it was like he'd never been on the brink of death," Dr. Rossman marvels. "He was all smiles and jokes, like nothing had happened."

Now at an advanced stage of the disease, Tresz has limited hand function and must use a continuous positive airway pressure (CPAP) machine during the day and a similar machine to assist his breathing at night. During their visits, Dr. Rossman focuses on Tresz's mobility and emotional state. Since depression and anxiety are common in patients with advanced DMD, Dr. Rossman spends much of the time talking to Tresz about his daily activities to make sure he's still in good spirits.

"Despite his physical limitations and life challenges, Willie is hilarious," says Dr. Rossman. "I'm sad to see him go [from Children's Hospital to an adult clinic], but it's wonderful that he gets to experience adulthood." Tresz hopes his next neurologist will be as caring and compassionate as Dr. Rossman. "Whenever I see him, I always feel like I'm hanging out with a friend," Tresz says. "I've never felt like just a patient to him."

Physiatrist: Kathryn Mosher, MD

Dr. Mosher guides Tresz's rehabilitative care, prescribes and checks his mobility aids such as braces, and recommends other medical equipment—"like when I needed splints for my hands to keep them straight," says Tresz. "I don't think anyone could explain my disease better than she does," he adds.

Dr. Mosher, who specializes in physical medicine and rehabilitation and has treated Tresz for more than 12 years, starts each visit with questions: "What have you been up to? Where are you thriving? What are your challenges?" She might then check and adjust his wheelchair. "Like most older patients with muscular dystrophy, Willie needs a chair that can accommodate a ventilator, as well as special pressure-relieving cushions to prevent skin breakdown," Dr. Mosher says.

She ends each visit with a pep talk. "Part of my job is to cheerlead so that he believes in himself and feels he can conquer the world," she says. "I know he can."

Pulmonologist: Debbie Toder, MD

Pulmonologists are crucial for a person with a neuromuscular disease, whose respiratory problems can go undetected until very advanced. "As the disease progresses, all the muscles—including those involved in breathing—get weaker," Dr. Toder explains. When Tresz was hospitalized for pneumonia two years ago, his lung muscles were so weak he required a ventilator, which he still uses today. "The ventilator is what keeps him out of the hospital," says Dr. Toder.

During their biannual visits, Dr. Toder checks Tresz's lung function and ventilator. If he's having any trouble breathing—for example, if he has a bad cold—she sees him immediately. "Dr. Toder is the person I really need to listen to if I want to stay out of the hospital," says Tresz.

Cardiologist: Ashish Saini, MD

Many neuromuscular disorders, including DMD, can significantly affect the heart; that's why patients have a cardiologist on their team. During Tresz's annual visits, Dr. Saini performs an echocardiogram (a heart ultrasound) as well as an electrogram to check Tresz's heart function, including its electrical activity. So far, Tresz's heart is in good shape, which Dr. Saini attributes to Tresz's diligence about taking his medications, including ACE inhibitors to prevent thickening of the heart valves. "Willie has always been very compliant." Tresz considers his cardiologist an extra layer of reassurance. "Even though I've never had a problem, I feel relieved knowing Dr. Saini's keeping a close watch on my heart," he says.

Nurse: Sharon Alderman, RN

To live independently, Tresz requires round-the-clock care, with four nurses rotating 12-hour shifts. Alderman is his main nurse. "I do everything for him except talk," she jokes. She helps him go to the bathroom, take a bath, get dressed, and eat, and keeps an eye on his ventilator to make sure it's working.

"He's such an inspiration to me," says Alderman. "He's taught me to appreciate everything I have and not let little things bother me." The two share a love of country music and enjoy singing and performing for each other. "She's like my family," Tresz says. "She keeps me healthy by making sure I eat well and brush my teeth."

Physical Therapist: Stephanie Noble, PT

The goal of physical therapy is to keep patients mobile and reduce their pain through specific exercise and advice. Noble helps Tresz avoid contractures in his joints that can cause discomfort and restrict movement. "We teach and encourage basic stretching that he can do at home every day with his nurses to help maintain his range of motion," she explains. She also has recommended night splints to help Tresz stretch his ankles and taught his nurses how to position him to provide prolonged stretches for his various joints. "Without her, I wouldn't be able to move around as much as I can," Tresz says.

Noble also makes sure his orthoses—the braces he wears to hold the contracted muscles of his feet and ankles in a more normal position—work and don't leave marks on his skin. "We also talk a lot about accessibility, especially at the theater where he performs," Noble says.

Occupational Therapist: Taylor Lewis, OT

Lewis teaches Tresz strategies for feeding, grooming, and dressing himself and for using his wheelchair more effectively. "If Willie says he's having trouble reaching or moving something, for example, I position a table in front of him, and we find ways to move his arms or the armrest on his wheelchair so he can grab it," Lewis says. She also adjusts his seating so he doesn't get skin sores or experience pain from sitting in just one way. Most recently, she got him a communication system that allows him to type on a keyboard just by moving his eyes. "That was a real game changer," says Tresz. "I don't have to rely on my nurse to help me use my computer. I can do it all myself."

Case Manager: Casey Weaver

Adults with muscular dystrophy often need help from case managers to find the services required to live independently—like housing, in-home support, and transportation. It's because of Weaver that Tresz lives in a group home and not a nursing home. She helped him get the state Medicaid waivers after he was hospitalized and needed a ventilator and 24-hour nursing care. "It's so important for Willie to be out in the community," says Weaver, who works for the Summit County Board of Developmental Disabilities. "Many people in his stage of the disease end up alone and isolated, spending their days playing video games. We are determined not to let that happen."

Social Worker: Noelle Buso, LISW-S

Medical social workers focus on the practical aspects of having a chronic condition, such as insurance claims, medical equipment needs, and home care. "When Willie wanted to live on his own, we coordinated with the Summit County Board of Developmental Disabilities to arrange full-time nursing support," says Buso, who is a key contact person for Tresz and acts as liaison between case manager Weaver and the hospital or any outside providers. "Noelle calls me periodically to make sure my wheelchair is working correctly and I don't need any refills for my heart or acid reflux medications," Tresz says. Buso is also the contact for medical questions from Tresz's court-appointed guardian, who helps him make decisions about health care, housing, food, and clothing.

Dietitian: Debbie Carpenter, RD

Patients with DMD may need to modify their diet because of their condition, especially as it progresses and swallowing becomes more difficult. A dietitian provides guidance in doing so.

"When I first met Willie, he'd just gotten out of the hospital and had a feeding tube," Carpenter says of Tresz. She helped him transition from the tube to eating soft foods like yogurt and applesauce and ultimately solid foods.

Carpenter, who sees Tresz every three or four months, has educated him about the importance of eating calcium-rich foods, since people with DMD are at higher than average risk of developing osteoporosis because they don't do any weight-bearing activity. (Tresz takes daily calcium and vitamin D supplements.) She also urges him to cut back on high-calorie food and drinks like soda. "Anytime I visit Debbie and tell her I'm drinking water instead of soda, she's very happy," he says. "If it weren't for Debbie, I'd be eating fried chicken and pizza every night. I might be happier, but I'd be a lot heavier—and my health wouldn't be as good."

Patient: Patrick Hale

Age: 65
Disorder: Alzheimer's disease
Hometown: Owensboro, KY

Patrick Hale was diagnosed with Alzheimer's disease at the age of 57 in 2012 and subsequently became a patient at the Memory Diagnostic Center (MDC), affiliated with the Charles F. and Joanne Knight Alzheimer's Disease Research Center at Washington University School of Medicine in St. Louis—300 miles from his home. He and his wife, Susan, traveled there once a year until December 2018, when he had to move into a nursing home.

Before his diagnosis, Patrick—a father of two—golfed frequently, bowled in five different leagues, and played cornhole, horseshoes, and pool. He also loved to read, often swapping books with family and friends. Because of his diagnosis, he had to leave his job as a manager at the power plant where he'd worked for decades.

As his condition deteriorated, Susan quit her job as a school cafeteria cook to care for him full-time. Now, six days a week, she drives 80 miles round trip to visit him in the Indiana nursing home. "Not being able to take care of him anymore is hard, but [this] is the best thing for him," says Susan. "He gets services like music therapy that I wouldn't have been able to provide at home."

Although Patrick stopped seeing members of his St. Louis team a year and a half ago, Susan keeps in touch with them via phone and email. "I would never be able to make it through this journey without them," she says.

Neurologist: David M. Holtzman, MD, FAAN

At each visit with an Alzheimer's patient, the neurologist administers tests to assess memory, attention, language, reading, and problem-solving skills. Dr. Holtzman would also give Patrick a basic neurologic exam, checking his muscle tone, reflexes, and coordination, all while engaging in active conversation. "We talked a lot about sports, since Patrick's a huge Ohio State fan," says Dr. Holtzman. "I could get a good idea of how he was doing from our casual banter."

At their annual visit, Dr. Holtzman always completed a physical exam of Patrick, reviewing his medical history and medications. While Patrick was taking memory and thinking tests, Dr. Holtzman chatted with Susan. "We always see the spouse or caregiver separately because they're the ones that have the best sense of what's going on," says Dr. Holtzman, who received formal training in Alzheimer's disease and other dementias. "It also allows me to check in with the caregiver."

"At our very first meeting, Dr. Holtzman gave me his cellphone number," Susan recalls. "Whenever I needed him, he answered right away."

Nurse: Dawn Ellington, RN

Among her other roles, Ellington serves as a go-between for patients and doctors, and she's also the patient liaison for all 11 MDC physicians. "If there are any problems, the patients or their caregivers call me, and I triage who they need to see," she says. "For example, if Susan called, we'd figure out whether Patrick needed to be brought to the emergency department or could see his primary care physician the next day."

In late 2018 when Patrick's behavior became erratic and he was harder to control, Susan found Ellington particularly invaluable. "Patrick developed a fear of water, so anytime I needed to bathe or even shave him he'd become aggressive," Susan says. "Dawn told me to call my local sheriff's department to let them know what was going on, so if I ever needed to call, they wouldn't come in with guns blazing." That proved to be good advice when, in March 2019, Susan had to call 911 after Patrick attacked her and broke her finger. "By the time the sheriff got here, Pat had calmed down," she recalls. "He was sitting next to me in a diaper and T-shirt rubbing my shoulder as I cried."

"The hardest part of my job," Ellington says, "is listening to a family member cry on the phone and all I can do is offer support." She shares her cellphone number and encourages family members to call anytime. "If it's an emergency, I know I can text one of our doctors, day or night, and they'll get back to me immediately," she says.

Nurse Practitioner: Cassandra Ward, ANP-C

Between visits with their neurologists, many patients with dementia see nurse practitioners for follow-up or urgent care. At the MDC, Ward was the point person for all of Patrick's neurologic assessments. She also checked in with him and Susan to gauge their emotional state. "As a nurse practitioner, I have more time to spend with patients, so I can really visit with them." She is particularly attuned to signs of depression in caregivers. "It is so challenging and emotional for spouses, who have to watch as they slowly lose their partner."

When Patrick's condition worsened—he refused to eat and was physically aggressive at times—and Susan realized she could no longer take care of him at home, she relied on Ward for assistance. Ward also advised Susan when Patrick began losing weight rapidly. They worked together to come up with nutritious meals Patrick could eat on his own, with his hands, like chicken tenders.

Susan leaned on Ward again when it came time to consider hospice. "She did research for me and determined that Pat actually had an accelerated death benefit on his life insurance policy, which meant that we could use it for his end-of-life care," Susan says. Ward filled out all the paperwork and dealt with the insurance company. "For years, Pat took care of all our finances and our insurance," says Susan. "To do all that paperwork while also taking care of Patrick and grieving was just too much for me."

Though Patrick is no longer being treated regularly at the MDC, Ward still emails Susan several times a week to make sure she's okay. "Pat and I were supposed to visit the clinic last August for follow-up care, but we canceled it because Pat couldn't travel," Susan says. Ward phoned Susan the day of the canceled appointment to check in and say hello.

Care Consultant: Scott Morrow, MSW, LCSW

Social workers like Morrow help dementia patients and their families arrange hospice, private home health care, and live-in help, and they can make referrals to organizations that provide financial and legal advice.

Morrow, a social worker at the Missouri chapter of the Alzheimer's Association that is affiliated with the MDC, typically meets with MDC patients and their families after the initial diagnosis to lend emotional support. "Most patients and their families just want someone to listen to them and validate their feelings," he says. "People are afraid of dementia—they've heard horror stories and assume their loved one will become aggressive or have other strange and bizarre behaviors. I explain that the disease looks different in each patient." When a family is ready, he talks to them about the timeline. "It's a terminal illness, but people aren't always ready to talk about it," he says. "[Eventually] we need to have that conversation so families can plan for the patient's care and cost of services."

Morrow also helped plan Patrick's long-term support. "I was numb and overwhelmed," says Susan. "Scott and Cassandra kind of took over so I could focus on my husband." Although Susan didn't need any, Morrow also can give referrals for counseling, support groups, and other respite care.

How Advanced Practice Providers Care for Patients

In 2010, Melanie Branon was vice president of corporate communications for a high-tech company in Silicon Valley, when she was felled by a thunderclap migraine which morphed into chronic migraines over the next 10 years. The pain was so debilitating she had to go on disability and eventually retired. "My life went from being big and vibrant to very small and lonely," says the 66-year-old Los Gatos, CA, resident.

Today, Branon finds relief from one of the newer approved preventive medications and a supportive health care provider, Carol A. Barch, MN, FNP-BC, AHQ, a nurse practitioner at Stanford Medical Center. "Carol has been my champion. She's very accessible and very responsive to me," says Branon.

Barch is part of a growing category of nurses called advanced practice providers (APPs). Those acronyms after her name signify that she has a master's degree in nursing, she's board-certified as a family nurse practitioner, and has an added headache qualification. Her certification as a family nurse practitioner means she can treat patients of any age, and her headache qualification indicates she has expertise in treating and managing headache disorders, including migraine.

"Because of our educational background, nurse practitioners (NPs) can diagnose and treat patients, but the focus is on the patient and wellness. We try to empower patients to manage their disease successfully," she says.

Barch marshaled a group of specialists—including a physical therapist, an occupational therapist, and a psychologist specializing in pain medicine—to help Branon manage her migraine pain. The care Branon received was life-altering, she says. "I spent an hour and a half every day for a week with a pain psychologist who explained the causes of pain, how it was affecting me physically and mentally, and how my lifestyle was impacting it."

At the Emory Brain Health Center in Atlanta, Calli Cook, DNP-APRN, FNP-C, follows a similar comprehensive strategy. "We address everything that factors into the life of each individual patient, from their diet and socioeconomic status to their mental health." Cook has a doctorate in nursing and is certified as a family nurse practitioner.

Misconceptions persist about the APP field, which includes physician assistants. For example, Cook says she's often asked when she's going to become a doctor. Laurel Short, DNP, FNP-C, AHQ, says she explains her role to patients, letting them know she's an integral part of a comprehensive care team. "Physicians have a different background from nurse practitioners," she says, "so by all of us working together, the patient is going to get the best care."