Building a Foundation for Lifelong Function: Adaptive Fitness, Nutrition, and Assistive Technology at the UPMC Adult Spina Bifida Clinic

This article is part of a larger series of articles on the UPMC Adult Spina Bifida Clinic. Visit the series main article for links to other article in the series.”

For adults living with spina bifida, the determinants of long-term health and independence extend beyond what one would consider typical health care. Physical activity, nutrition, and access to appropriate assistive technology directly shape clinical outcomes and quality of life factors affecting mobility, community participation, and the risk of preventable complications. Yet these services can at times be difficult to access depending on where patients live and the resources available. They are inconsistently reimbursed by insurance providers and often viewed as ancillary rather than essential components of care for adults with spina bifida.

The UPMC Adult Spina Bifida Clinic approaches these aspects of care differently. Supported in part by longstanding funding from the Pennsylvania Department of Health, the program embeds adaptive fitness, dietary support, and assistive technology into its clinical model. These services are not positioned as extras or optional benefits. They are fundamental elements of preventive care and patient-centered wellness.

“Traditional health systems and providers do not always see fitness or nutrition as medical care, but for adults living with spina bifida, these interventions are essential to preventing complications and improving quality of life,” says Brad Dicianno, MD, professor of physical medicine and rehabilitation and medical director of the UPMC Adult Spina Bifida Clinic. “We consider them part of the core infrastructure of the clinic.”

At the heart of this effort is Dan McCoy, ACE-CPT, a certified personal trainer, adaptive fitness trainer, Paralympic gold medalist, and adult living with spina bifida, whose work exemplifies how lived experience can inform and transform the clinical care dynamic for adult spina bifida patients.

Adaptive Fitness Training: Redefining Possibility

McCoy joined the UPMC Adult Spina Bifida Clinic in 2017, bringing both elite athletic experience and personal knowledge of navigating spina bifida into his role. His training sessions and consultations are individualized to each patient’s goals, abilities, and environment. For some, that means improving the strength and endurance required for daily transfers or better wheelchair mobility. For others, it may involve cardiovascular fitness, weight management, or simply gaining the confidence to engage in physical activity safely.

“My job is to meet patients where they are and help them find what works,” McCoy says. “Sometimes that’s basic stretching or resistance training to make daily life easier. Sometimes it’s about getting back into recreational sports or finding a way to exercise outside of a rehab setting. Everyone is different and has different goals. We work to help patients meet those goals and, when they are ready, expand them and try new things.”

Patients work on exercises tailored to functional needs, from core stabilization to upper-body endurance. Equipment is adapted to accommodate different abilities, and creative solutions are employed when standard fitness tools fall short.

“I think a lot of people assume exercise is out of reach if you use a wheelchair or have mobility limitations. But that’s not even remotely true. We show patients they can build strength and fitness in ways that directly support their independence,” McCoy says.

For many patients, the benefits extend beyond physical health. Engaging in adaptive fitness builds confidence, fosters social connection, and helps shift identity away from medical dependency toward empowerment.

“When patients realize they can do more than they thought, it changes their mindset. They start to see themselves differently which positively affects their health and overall well-being,” McCoy says.

Monica Still, BSN, RN, has observed this transformation in patients firsthand as the clinical nurse coordinator in the UPMC Adult Spina Bifida Clinic.

“I’ve seen patients who were hesitant or even fearful about exercise gain confidence after working with Dan, even just after the first visit. It improves their physical function, but it also helps with mood, motivation, and overall well-being,” Still says.

Nutrition and Prevention

Alongside fitness, nutrition plays an important role in health maintenance for adults with spina bifida. The UPMC Adult Spina Bifida Clinic has a Registered Dietitian, Jacquelyn Klunk, MS, RDN, LDN, who provides one-on-one counseling and addresses issues ranging from weight management to gastrointestinal health.

“Adults with spina bifida face unique nutritional challenges,” Klunk says. “They are at increased risk for obesity, bowel and bladder complications, and metabolic disorders. Nutrition counseling can directly impact all of those areas.”

Klunk works closely with patients to tailor dietary plans to individual needs, often balancing fluid and fiber intake with bowel programs, monitoring weight trajectories, and addressing dietary restrictions linked to comorbidities. Nutrition education is a major component, as many patients have had little exposure to preventive nutrition in a clinical setting. Integrating a dedicated nutrition professional into the clinic helps patients prevent complications that can lead to downstream issues, short- and long-term.

“Issues like constipation, skin breakdown, or urinary tract infections are common drivers of morbidity in spina bifida. Many of those problems can be reduced or eliminated with targeted dietary strategies,” Dr. Dicianno says.

For adult patients with spina bifida, the continuity of seeing the same dietitian over time makes a difference.

“Patients learn to trust that advice, and we see better adherence when the guidance comes from someone who understands the complexities of spina bifida,” Still says.

Assistive Technology and Daily Living

Assistive technologies and devices are integral for many adults with spina bifida, providing both assistance and independence. Through UPMC’s Center for Assistive Technology and the Human Engineering Research Laboratories (HERL) — a joint project between the University of Pittsburgh, UPMC, and the U.S. Department of Veterans Affairs — patients of the UPMC Adult Spina Bifida Clinic have access to advanced assessments and customized devices. This includes wheelchairs, seating systems, environmental controls, and digital health tools.

“For many of our patients, the right wheelchair or adaptive device is as important as any medication,” Dr. Dicianno says. “It determines whether they can work, go to school, or participate fully in community life.”

McCoy often helps patients understand the functional benefits of different devices and offers guidance on what may make the most sense for each person’s needs.

“I can explain what worked for me and why or show them how a certain feature makes daily life easier. That kind of perspective is different from what you get in a traditional evaluation,” McCoy says.

HERL’s research capabilities also allow the clinic to bridge clinical care with engineering innovation. Patients can participate in studies led by HERL researchers, such as testing new assistive devices, while patient feedback from clinical encounters informs ongoing design improvements and future technology development.

“The clinic and the lab feed into each other,” Dr. Dicianno says. “We can take what we learn in research and apply it clinically, and vice versa.”

Funding the Gaps: Nonbillable but Essential

Services such as fitness, nutrition, or expanded technology support are sometimes not fully covered for adult spina bifida patients by all insurance providers To help bridge this gap, the clinic receives supportive funding from the Pennsylvania Department of Health.

“That funding support from the Pennsylvania Department of Health allows us to provide services that would otherwise be out of reach for some patients,” Still says. “It covers the work of our trainer, Dan, our dietitian, Jacquelyn, and many of the coordination services that are not billable. Without it, our comprehensive and multidisciplinary model would not be as robust as it has grown to be.”

The program also maintains a Client Assistance Fund, which helps patients defray some of the costs of critical items not covered by insurance, including adaptive equipment, transportation, and copayments.

“These supports make the difference between patients getting care or going without,” Dr. Dicianno says. “It’s about equity and ensuring that individuals with spina bifida have the same opportunity to maintain health and independence as anyone else.”

Expanding Lifestyle Medicine in Spina Bifida Care

The UPMC Adult Spina Bifida Clinic sees adaptive fitness, nutrition, and technology as core to the future of adult spina bifida care. McCoy envisions broader access to community-based adaptive fitness opportunities, so patients do not have to rely solely on tertiary centers.

“There should be places in every community where people with disabilities can go to exercise, get guidance, and feel welcome. Right now, that’s not the reality for most patients,” McCoy says. “Going into a gym or fitness center as a person with spina bifida can be an anxiety-filled experience. I get that and often have conversations with our patients about how to navigate this.”

The team also sees a greater need for expanding early education in the patient population, starting in the pediatric years and extending through adolescence and young adulthood.

“If patients and families understand from a young age that nutrition, activity, and technology are just as important as medical follow-ups, they’ll be better prepared as adults,” Still says. “Making it routine encourages people to engage in these areas daily. It’s like building muscle memory. The more you do it, the easier it becomes over time.”

There is also a growing need for integration with digital health and population-level approaches in adult spina bifida care.

“We need scalable solutions. Things like apps, remote monitoring, and virtual fitness programs that can reach patients where they are. That’s the ongoing evolution in this area,” Dr. Dicianno says.

The vision of the UPMC Adult Spina Bifida Clinic is comprehensive. It is a model where medical management, preventive lifestyle interventions, and assistive technology form an integrated mode of care.

“Our goal is to help adults with spina bifida live full, independent lives,” McCoy says. “Fitness, nutrition, and technology are part of that foundation. When we invest in these aspects of care, we are investing in the long-term health of the individual.”