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Stroke Survivors’ Resilience Captured by Duke Clinician’s Documentary

DURHAM, NC -- There was a reason guests were handed a packet of tissue before entering the theatre.

Duke clinician and researcher Jamila Minga, Ph.D, CCC-SLP, knew that her debut documentary about the understudied communication disorder that can follow after right hemisphere brain damage, or RHD, was bound to stimulate everyone’s tear ducts.

Minga, an assistant professor in head and neck surgery & communication sciences, premiered her first foray into filmmaking as part of Stroke Awareness Month at Duke’s Ruby Lounge on May 5 alongside director and North Carolina Central University (NCCU) professor of mass communication Michael Pearce.

The title of the documentary “RHD: Hidden Diagnosis” emphasizes the subtle nature of the disorder, despite the high rate of stroke. RHD can follow after a stroke on the right side of the brain, and lead to less overt communication disorders than what’s seen with people with left brain communication disorders.

A stroke is like a heart attack but in your brain. When a blood vessel in the brain gets blocked or constrained, it starves nerve cells of oxygen and nutrients, and leads to blood pooling in the brain. Someone in the US will experience a stroke every 40 seconds, making it the fifth leading cause of death nationwide. For those fortunate enough to survive a stroke, there can be serious side effects, such as communication impairments that make it difficult to understand or produce speech.

Obvious speech problems usually follow from strokes that occur on the left side of the brain. Because of that, Minga explained, clinical education, practice, and research have been on the overt communication impairments from left hemisphere stroke, leaving a whole other half of the brain and population of stroke survivors under identified and underserved.

Subtle Communication Impairments Cause Major Life Disruptions

Minga’s documentary sheds light on the underdiagnosed communication impairment after a right hemisphere stroke, or what clinicians call apragmatism. People with apragmatism are unable to interpret and/or produce meaningful and appropriate verbal language (such as the patient who invited Minga into his hospital bed as his wife sat in a chair beside him), and non-verbal language (like tone of voice, gestures, and facial expressions). But because RHD patients speak fluently without any apparent difficulties, they’re often looked over as being impaired.

Yet communication is much more than the ability to produce the basic elements of speech. 

“If you say something to me in a kind tone of voice, or you say something to me in a mean tone of voice, they could be the same words,” Linda Fetko, M.D., a former Duke physician and professor who has RHD, says in the documentary. “I didn’t have a way of knowing which way you meant those words.”

That might seem like a minor issue, but as many of the survivors revealed, it can come with some major life consequences, such as the loss of a job or a relationship. Or both.

“I’m not working now,” Dr. Fetko said. “I think between the communication issues and maybe some personality changes, unfortunately, my marriage didn't make it. And I understand that's really common, especially after right sided strokes.”

Community Helps RHD Survivors Cope

Since apragmatism is still underdiagnosed, survivors are often isolated and lonely.

“When you're alone at night, all these things seem to haunt you,” Durham resident Patricia Carrington says in the documentary. Like many others featured in the film, Carrington, a former claims investigator with the Social Security Administration, experienced profound loneliness in the aftermath of their stroke. “When you got people there it's different. But when you're alone, then it's just you and the stroke.”

The documentary highlighted the importance of Minga’s connecting people with RHD across the Piedmont and the power of shared experience.

With the RHD community Minga has helped foster, Simon Barton, a British expat and engineer-turned-writer after his stroke, said that the shared experience helps.

“I will never be able to recover to the level of a normal person or the normal Simon that I was before the stroke hit me,” Barton says in the film. “But I know I'm going to be better than I am today. Meeting these people and keeping in touch brings home the fact that you are not alone. And you get empowerment through that.”

A hopeful future

The documentary played to a packed house filled with a wide range of community members, including many of the stroke survivors featured in the film, their loved ones, stroke awareness groups, speech pathologists, and more.

After a standing ovation and the raising of the house lights, survivors and their families opened up about their experience and struggles, some with a tinge of dark humor.

“Thank you to all the spouses for sticking around,” said one stroke survivor in attendance. “You’re amazing. Mine was not amazing: Divorce pending.”

The Q&A session then morphed into survivors and clinicians lauding Minga for her work and showering her with gratitude for shining light on such a devastating yet relatively ignored disorder.

“Who here cried or almost cried?” asked Grace Hao, professor and chair of the communication sciences and disorders department at NCCU. A sea of hands instantly shot up.

Minga will now take the documentary on tour to help get word out about RHD. It was recently screened at the Longleaf Film Festival in Raleigh. And in the future, Minga hopes to get into the homes of everyone across the U.S. possibly by broadcasting it with PBS.

Outside of her filmmaking career, Minga will continue her research work at Duke with a newly funded project to link RHD patients’ communication characteristics with brain imaging in hopes of identifying where within the cortex things may go awry. This, Minga hopes, might provide a better understanding of and treatment for the language deficit.

For now, the best treatment alongside rehabilitative therapy is the community provided by Minga and the group of RHD survivors she’s brought together.

“I've lost a lot of my old friends,” Barton says at the end of the documentary. “But I've gained an awful lot of new friends.”

WAYS TO LEARN MORE AND SUPPORT RHD RESEARCH

Learn more about Minga's research: https://headnecksurgery.duke.edu/divisions/communication-sciences/research/research-laboratories/minga-right-hemisphere

Support the Right Hemisphere Stroke Research & Education Fund: https://www.gifts.duke.edu/dukehealth?designation=391000517

Participate in a study: https://redcap.duke.edu/redcap/surveys/?s=48DCTPF93H9TXRW4