Georgia man fights to regain his ability to speak
STOCKBRIDGE, Ga. - When Jeremy Obata smiles, during a post-surgery check-up at Emory Brain Health Center, he reminds his sister Nkechi of his life before all of this, when the Stockbridge 22-year old was just a typical teenager.
"Loves to watch TV movies, eat a lot, lay around," she remembers.
Jeremy was in high school ROTC, hoping to one day join the military.
But at 16, his mom Johnnie noticed Jeremy seemed to be struggling, holding his mouth open.
"He just said he couldn't close his jaw," Nkechi says.
Things quickly got worse.
"He really wasn't able to talk to us. He always had to use his phone to communicate everyone around him," Nkechi says.
Jeremy had an MRI, and that's when doctors noticed the two white spots at the center of your screen.
They call this "the eye of the tiger," and it's a telltale sign of Pank 2, an extremely rare genetic disease in which iron accumulates in the brain, causing a person's muscles to contract uncontrollably.
"It's just his body is failing him. His mind is still intact. And I think that's the hardest thing for him. You know what you can do, you know what you want to do, but your body won't let you," says Nkechi.
Dr. Stewart Factor, director of the Parkinson's Disease and Movement Disorder Program at the Emory Brain Health Center, first saw Jeremy at 17.
"He couldn't really speak at all, and he was having trouble eating, he'd lost weight. He could still walk, but he had an abnormal walk," says Factor.
"And that's the hardest part of it all is to have people staring, and they don't understand and they don't know," says Nkechi.
So, Jeremy has stopped going out. It's too hard.
"I mean, my mom had a birthday dinner and all of the siblings came. And we were like, 'Jeremy, just come.' And he said, 'I don't want people to stare at me while I eat.' And it really shattered me because it really sunk in – it really sunk in, because he wasn't having a normal life anymore," says Nkechi.
Running out of options, Jeremy chose to undergo deep brain stimulation, a surgery for Parkinson's and other tremor disorders. Only about a dozen Pank 2 patients worldwide have had this surgery, with mixed results. So, with no guarantees, Jeremy had electrodes placed into his brain, connected to a pacemaker-like device that delivers electrical pulses into areas triggering his muscle contractions.
"So we don't know how it works exactly, but we know it alters the firing pattern of the region and decreases the abnormal, involuntary movements," explains Factor. "It worked. It wasn't an overnight success but in time, it just started getting better and better and better."
Nine months out, Jeremy Obata has good and bad days, but he's walking much better, falling down less. At home, he's more engaged, more his old self.
"I am happy he got this surgery. I feel like it was meant to happen. And even if we can get a little bit, a squeezing of a little bit, we'll take what we get at this point."