Looking beyond the disease to the person living with it

In a new course taught by PIK Professor Jay Gottfried, students lead discussions on cognitive neuroscience topics and then meet patients who have relevant neurologic conditions.

A man standing in front of a class of college students pointing to a scan of a brain.
A new course taught by PIK Professor Jay Gottfried (standing) has students leading discussions on cognitive neuroscience topics during one session, like the class shown here, then at the next, brings them face to face with people who have those or similar conditions.

At the front of a small classroom in Stemmler Hall, Penn professor Jay Gottfried asks junior Edward Rodriguez Caceres to dangle a set of keys at eye level. Gottfried first reaches with his left hand, successfully collecting the keys. He repeats the action with his right hand, intentionally missing his target by a few inches to demonstrate how a neurologic condition called Balint’s syndrome, the focus of a talk Rodriguez Caceres is currently giving, might alter a person’s ability to successfully reach for and grasp objects right in front of them. 

During that same class period, juniors Kelly Litts and Kaila Helm continue exploring the week’s theme of “visuospatial processing,” giving presentations on simultanagnosia and posterior cortical atrophy (PCA), respectively. Simultanagnosia is a neurologic deficit in which scenes appear choppy and piecemeal. PCA, a variant of Alzheimer’s disease, affects visual attributes including loss of navigational abilities, reading impairment, and simultanagnosia. 

A girl in a polka dot shirt in front of a computer gesturing with her hands.
Junior Kelly Litts is one of 15 students in the class. Here, she discusses simultanagnosia, a neurologic deficit in which scenes appear choppy and piecemeal.

Two days later, in the Class of 1962 Auditorium, Litts, Helm, and 13 other students meet a 63-year-old patient with a lifelong history of epilepsy due to a lesion in her occipital lobe, which contains the brain’s visual-processing areas. In a conversation with Gottfried, she shares the story of how her seizures changed following surgery two decades earlier, as well as the visual challenges she’s experienced. 

That type of pairing—a student-led class, then hearing from someone living with a relevant condition—is the crux of Gottfried’s course, A Patient’s Worth 1,000 Words: Neurological Insights into Cognition and Behavior, which he taught for the first time this semester. The idea was to go deeper than a cognitive neuroscience survey course would, plus give students firsthand experience talking to and learning from real patients. Gottfried’s class was offered through the School of Arts and Sciences but hosted through the Perelman School of Medicine, highlighting cross-disciplinary, cross-school integration at Penn. 

“Each week on Tuesday, we discuss a different cognitive neuroscience topic. It could be attention, memory, language,” says Gottfried, a Penn Integrates Knowledge Professor with appointments in the departments of Psychology in the School of Arts and Sciences and Neurology in Penn Medicine. “That sets us up for the Thursday seminar class, where a patient who typifies some of the principles we discuss on Tuesday joins us.”  

One week, that was a patient with Parkinson’s disease. Gottfried conducted a basic neurological test to demonstrate the patient’s tremors, stiffness, and balance issues. He then performed cognitive testing, illustrating some of the patient’s difficulties with attention and executive functions, and finished with memory testing to show that, by comparison, the patient’s long-term memory was well-preserved. 

A man gesturing with his hand while talking to a woman whose back is to us.
When speaking to the patients who come to the class, Gottfried (left) tries to leave the conversation as open-ended as possible. “I don’t really have a set script other than making sure that we get a good sense of the patient’s background and history,” he says.

“I try to leave my questions and exam fairly open-ended. I want to make sure the patient talks as much as he or she wants to. I don’t really have a set script other than making sure that we get a good sense of the patient’s background and history,” he says. “One of my goals was to make sure the patients feel comfortable telling their unique stories to the students. These opportunities are informative and enlightening for the students but also help empower the patients to show that they have a lot to teach and contribute to the class. It was really a perfect two-way street in that sense.” 

As Gottfried had hoped, the students have found the personal interactions invaluable. Litts, originally from Florence, South Carolina, recalls a session with one person whose neurodegenerative disease led to interesting behavioral changes. 

“He came in with his wife,” Litts recalls. Gottfried and Lauren McCollum, a Penn Memory Center cognitive and behavioral neurology clinical fellow helping with the class, asked questions not only of that patient but of his partner, too. “That’s more important than I think a lot of us realized,” Litts says. “Maybe this patient wasn’t acting particularly strangely in his own’s eyes, but he was to his wife, who he’d been married to for 35 years. She noticed this complete personality change.” 

People sitting in rows of red chairs in an auditorium.
The most unique facet of the course puts the students face to face with real patients, like above, where they are listening to a conversation between Gottfried and a 63-year-old woman who has had seizures nearly her entire life.

Helm brings up a similar experience with a patient who had a type of dementia called behavioral variant frontotemporal dementia. “The patient seemed really extroverted, but if his wife hadn’t been there to say he used to be an introvert, you would miss a complete layer of the symptom presentation,” says the Newburgh, New York, native. “We’re really learning how to think about asking patients questions and how getting those answers can reveal more.” 

Though Gottfried says he may tweak certain aspects of the course when it’s taught again, the first cohort of students seems to have come away with something beyond just knowledge of cognitive neuroscience; they’re inspired to understand the patients behind the conditions, too.

“Reading a textbook, you don’t get at certain aspects of a disease, what it does to your interactions with other people and how you live your life,” Helm says. “You can’t get that in a normal cognitive neuroscience class [either]. Here, because you’re meeting the patients, it’s memorable.” 

Both Helm and Litts agree the course exceeded their expectations. It’s done the same for Gottfried. 

“For undergrad students to see something like a resting tremor is really cool. Some of the students have personal experiences with it, like a grandfather with Parkinson’s,” he says. “I hope they’re getting interesting things out of this class that they can relate to both personally and meaningfully but also get more context and maybe even a little comfort or security. Knowledge is always good.” 

Jay Gottfried is a Penn Integrates Knowledge Professor and the Arthur H. Rubenstein University Professor at the University of Pennsylvania with joint faculty appointments in the Department of Neurology in the Perelman School of Medicine and the Department of Psychology in the School of Arts and Sciences.

Lauren McCollum is a cognitive and behavioral neurology clinical fellow at the Penn Memory Center at the Penn Neuroscience Center at the Perelman Center for Advanced Medicine. 

Kaila Helm, a junior from Newburgh, New York, is a Biological Basis of Behavior major in the School of Arts and Sciences at the University of Pennsylvania

Kelly Litts, a junior from Florence, South Carolina, is double majoring in Biological Basis of Behavior and English in the School of Arts and Sciences at the University of Pennsylvania.