Dystonia: Jamie Dupree Fights Back Against Oromandibular Dystonia

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jamie dupree with physician

Fifty-five-year-old husband and father of three Jamie Dupree has been a radio news correspondent for more than 30 years. He’s covered the United States Congress and politics under six different presidents, but about three years ago, Jamie’s career and personal life drastically changed.

During a family vacation to England, Jamie got sick. The illness morphed into a heart event — warranting a trip to the emergency department. Strangely, following that incident, he began slowly losing his ability to speak. Jamie now struggles with a condition called oromandibular dystonia — a neurological disorder that causes uncontrollable muscle contractions in his tongue, voice box and larynx. This condition is both rare and difficult to treat.

Looking for Answers

Over the years, Jamie has traveled thousands of miles and seen dozens of specialists in his quest to speak again. In his journeys, he turned to Hyder Jinnah, MD, PhD, a neurologist at Emory Brain Health Center who is widely known for his research in movement disorders — particularly dystonia.

Oromandibular dystonia is a perplexing condition, Dr. Jinnah explains, “Somehow, the brain gets the signal wrong and sort of over-does the movement. The muscles contract too strongly and occasionally go into spasms. When Jamie speaks, his tongue is doing way more than it should.” Dr. Jinnah believes that Jamie was born with something that genetically predisposed him to the condition and that it was triggered by something when he got sick during his family vacation a few years ago.

Dystonia can affect any area of the body, but the way it affects Jamie is considered rare. According to Dr. Jinnah, people who use their voice a lot, like radio announcers, preachers and teachers, are the ones who develop this particular type of dystonia most frequently.

Since the tongue is such a complicated muscle, oromandibular dystonia is very difficult to treat. Jamie was given the option of three paths for treatment — medication, botulinum injections or deep brain stimulation surgery — none with highly-optimistic success rates.

After weighing the pros and cons of each option, Jamie chose botulinum (Botox®) injections into his tongue. The hope was that the injection would relax his tongue enough to enable Jamie to speak clearly. Unfortunately, the treatment did not provide the improvement Jamie and his doctor were hoping for.

Never Giving Up

After three years of having a limited ability to speak, Jamie has found a couple of work-arounds that seem to help. For instance, if he holds a toothpick or pen in his mouth while he’s talking, it can help control his tongue a bit, so he can get more words out. He’s also found that if he tries to use a different tone of voice — one that he jokingly refers to as ‘talking like a Muppet’ — he can talk a little better too.

Throughout this difficult setback, Jamie’s career as a political commentator has continued in unexpected ways. A Scottish company sifted through years of his archived audio and built a voice. Now, he writes his stories and his new (computerized) voice delivers them over the radio.

What Jamie misses most is just talking to friends and especially his wife and kids, and that’s why he’s still searching for answers and waiting for a miracle. “Every day, I wake up and hope it is solved,” he says. When asked if he ever worries that this is the way it’s going to be for the rest of his life, Jamie boldly responds, “What am I supposed to do? Curl up in the corner? Give up? I’ve got three kids. I’ve got a wife. I am not going to give up.” It’s with that strength and tenacity that Jamie will continue to live his best life and search for ways to beat this condition and get his voice back.

 

About Your Fantastic Mind

Emory University and the Emory Brain Health Center have partnered with Georgia Public Broadcasting (GPB) on a television series, Your Fantastic Mind, which features compelling stories on brain-related health and wellness.

Your Fantastic Mind began airing season 2 in September 2020 on GPB’s statewide television network. The Emmy winning news magazine-style show highlights patient stories and reports on cutting-edge science and clinical advances in neurology, neurosurgery, psychiatry, sleep medicine and rehabilitation medicine.

For a complete listing of Season 2 episode air dates and times, visit emoryhealthcare.org/yfm.

Season 1 of Your Fantastic Mind examined topics including sleep apnea, obsessive-compulsive disorder, Alzheimer’s disease, stroke, PTSD, Huntington’s disease, migraines and video gaming disorder, which has been designated a mental health disorder by the World Health Organization.

Jaye Watson is the show’s host, writer and executive producer. She is an Emmy and Edward R. Murrow award-winning veteran Atlanta journalist and video producer for the Emory Brain Health Center.

Emory Brain Health Center

The Emory Brain Health Center uniquely integrates neurology, neurosurgery, psychiatry and behavioral sciences, rehabilitation medicine and sleep medicine to offer world-class, patient-centered care, treatment and discovery for brain and spinal cord conditions. Bringing these multiple specialties together allows more than 400 researchers and clinicians to work in partnership to predict, prevent, treat and cure devastating diseases and disorders of the brain more rapidly. These collaborations are demonstrated in numerous centers and programs across the Brain Health Center, including the Epilepsy Center, Pituitary Center, Stroke Center, Treatment-Resistant Depression Program and Veterans Program.

Emory’s multidisciplinary approach is transforming the world’s understanding of the vast frontiers of the brain, harnessing imagination and discovery to address 21st century challenges.

Learn more about comprehensive, diagnostic and innovative treatment options at the Emory Brain Health Center.