KNOXVILLE, Tenn. (WATE) — September is National Dystonia Awareness Month. Dystonia is a chronic movement disorder affecting the brain and nervous system. If you are like a lot of people, you might not even know what the disease is but for those who live with it, it’s a debilitating condition that makes daily life a challenge.
Teresa Hauge’s life has been anything but a walk in the park.
“I was just constantly shaking. My body was in constant motion, I was losing my voice. Nobody could understand me,” she said.
Hauge was diagnosed with dystonia and essential tremor. Her condition had deteriorated so much over the last three years that she felt she had to do something. The smallest of tasks were almost undoable.
“It caused a lot of anxiety, you know because people were constantly staring. And I tried to make jokes and stuff about it just to, you know, lighten the mood but it was still very difficult because people don’t understand it,” said Hauge.
In December 2022, Hauge underwent deep brain stimulation (DBS) surgery at the University of Tennessee Medical Center. Her husband, Bill, was by her side.
“I was kind of nervous about the whole thing, but the recovery was so fast. It was just within a matter of days when she was almost functioning like she was before,” said Bill.
Dr. Chris Tolleson, the director of The Cole Center for Parkinson’s & Movement Disorders at UTMC, explained how the surgery works.
“What happens is that electricity is provided by that battery pack or pacemaker-like device and travels up those implants and we’re able to cover up abnormal circuits in the brain and we use it for a variety of conditions,” said Tolleson.
Hauge’s results were remarkable. Tolleson believes DBS could benefit so many others who suffer from dystonia and other movement disorders, like Parkinson’s.
“Dystonia is fairly under-diagnosed, I think part of the problem is, kind of as you’ve alluded to, it’s different for different people. There are estimates that 200-250,000 people have dystonia in the United States but again it’s often hard to diagnose because it’s not the same for every individual,” said Tolleson.
While Hauge still lives with dystonia, her quality of life has improved.
“I got to the point that it was, I can’t keep living this way, and I just put it all in God’s hands. [My DBS surgeons] were a total miracle that was sent to me, and it was a game changer. I’ve got my life back,” said Hauge.
Not only does she have it back but it’s better than ever.
If you would like to learn more about deep brain stimulation (DBS), The Cole Center for Parkinson’s & Movement Disorders at the University of Tennessee Medical Center is hosting the 8th Annual Symposium on Parkinson’s on Friday, Oct. 6, 2023, from 9:00 a.m. to 2:30 p.m. The event is free. Registrants can attend in person or virtually.