Tracking What Matters: Evolving Care for Functional Neurological Disorder - December 2025
By Drew Thodeson MD in collaboration with Steven Painter, Founder of Neurolog (https://www.neuro-log.com/)
Functional Neurological Disorder (FND) is having a moment. This is not because it’s new, but because we are finally learning how to look at it with sharper tools, deeper compassion, and better science. As has been the case of many shifts in brain health, this moment is being pushed by people with lived experience with FND.
Over the past year, I’ve had the privilege of collaborating closely with Steven Painter, whose symptom-tracking application, Neurolog, represents something the FND community has long needed: a patient-powered, data-driven way to understand patterns that clinicians often sense but struggle to measure. Steven brings lived experience, intellectual rigor, and a willingness to advocate.
The current system is fragmented, reactive, and often abandons patients after diagnosis. Single-handedly, he has built a platform that tracks what actually matters to people living with FND, in real time. Perhaps with this novel look at the nuances of what makes FND so debilitating, we can begin to move past fear and stigma.
How My Understanding of FND Has Changed
My understanding of FND has evolved over years of caring for children and families affected and those who recover to lived experience. As with all neurological disorders, emotional systems matter. But in FND, emotionality can feed, sustain, and amplify symptoms. That does not mean FND is “all emotional.” It means the brain’s alarm systems, attention networks, and meaning-making machinery become locked into maladaptive loops.
Awareness of this is critical. Recovery is NOT about suppressing emotion or reframing thoughts into forced optimism. Instead, recovery depends on learning how to move through emotional states without getting stuck inside them. This is a subtle distinction and represents a skill set that includes recognition, tracking, regulation, and reconnection.
This is where clinical care and patient-generated data begin to converge.
Beyond Binary Thinking: What the Data Are Telling Us
One of the most important contributions from Steven’s recent work is the rejection of a simplistic distress-versus-resilience model of FND. Large-scale digital phenotyping demonstrates that emotional experience in FND is multidimensional, not binary.
Distinct emotional phenotypes—distress, shutdown, activation, anger, isolation, ambivalence, and resilience—carry different risks, trajectories, and treatment needs. Some states are loud and alarming while others are quiet, numbing, and easily missed. Both can perpetuate disability if not recognized.
This idea aligns with what many clinicians see but struggle to formalize. It’s not all “stress.” It is a complex human reaction which spans the emotional spectrum. Different patients need different entry points into care, and timing matters. Early recognition and early intervention can dramatically change outcomes. We need to aim at treating this with the urgency it deserves. Formalizing diagnosis and initiating treatment within weeks rather than months. We have a long way to go.
The AAN Recommendations: A Step Forward, With a Gap
The recent American Academy of Neurology recommendations for FND deserve recognition, particularly for their explicit emphasis on compassionate, empathetic, and validating care. In a field historically burdened by stigma, this language is corrective. Too long have people with FND been relegated to shadows and shunned as somehow not deserving of care.
Where the guidelines fall short, however, is in addressing continuity of care. Diagnosis without a roadmap to continued care is not compassion it is deflection. The guidelines provide limited practical guidance on how patients should be followed longitudinally, who should serve as the medical home, or how care should adapt as symptoms evolve, shift, or improve. For a disorder defined by fluctuation and heterogeneity, this omission is striking.
FND does not resolve on a single visit. It improves through sustained connection, skill-building, and coordinated follow-up. Without continuity, even the most compassionate diagnostic conversation risks becoming another point of abandonment. In my clinical experience I have learned that most children recover within 7 months if the diagnosis is made within the first year of symptom onset; however, many people with FND recover over years and need support navigating their disability.
Connection as Treatment
One of the most consistent themes emerging from both clinical experience and patient-generated data is that isolation keeps FND alive and connection weakens its grip.
This is ldue to a complex interplay of neurobiology, psychology, family life, and social life. Patients who can rebuild connection (to clinicians, to others, to their own bodies and narratives) recover more fully and more durably. Compassionate care is not an adjunct. I truly believe that every contact point is therapeutic and mechanistically relevant.
Tools that support emotional tracking, mindfulness, behavioral reinforcement, and meaning-making do not replace therapy or rehabilitation, but they scaffold recovery in the spaces where patients actually live. I often tell patients that therapy is necessary, but not sufficient. The healing of the FND brain comes in a much more complex way. It comes from within and through support.
Looking Ahead
We are continuing this collaboration in a forthcoming piece with additional partners, building on emerging data, lived experience, and clinical insight. I’m deeply grateful to Steven for his partnership, curiosity, and persistence in a space that has too often been misunderstood or minimized.
What is becoming increasingly clear is that FND is measurable and FND is recoverable.
My hope is that FND care improves when sincerity, continuity, and connection are treated as core clinical tools—not optional extras.
— Drew Thodeson, MD
Pediatric Neurologist | FND Specialist
Founder, Mind, Body, and Brain Neurology & MBBN Research
References
Painter S, Zeestraten-Bartholomeus P, Mehrad A. Beyond Distress and Resilience: Identification of Seven Distinct Emotional Phenotypes in Functional Neurological Disorder Through Large-Scale Digital Phenotyping. ReAttach Affect Coach Journal. 2025. https://affectcoach.com/index.php/ReAC/article/view/31
Management of Functional Seizures Practice Guideline Executive Summary Report of the AAN Guidelines Subcommittee. Benjamin Tolchin et. al. Neurology 2026. https://www.neurology.org/doi/10.1212/WNL.0000000000214466