Dystonia: Jamie Dupree Fights Back Against Oromandibular Dystonia

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.

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.