Wired for a new start
Aspen, CO Colorado
ASPEN ” After more than 20 years wracked by uncontrollable muscle spasms during his every waking hour, Jason Hoffmann today is steady, still and smiling.
When he was 9 years old, Hoffmann was struck by dystonia, a rare, genetic neurological disorder that caused his muscles to convulse spastically ” especially in his back and neck.
But thanks to recent brain surgery and electrodes inserted under his skin just above the temples, Hoffmann, 31, has a reprieve.
“I feel really great,” he said Thursday. “It’s easier to breathe. To eat. And now I can run.”
Two inches taller since his muscles relaxed from the procedure, Hoffmann has also gained 20 pounds.
“I could burn calories just sitting on my couch,” Hoffmann said, but since the constant muscle motion stopped he has to exercise regularly to stay fit.
“I don’t want to get big and fat,” Hoffmann joked.
His speech is at times shaky and he suffers from severe scoliosis, both conditions that can improve with ongoing therapy, but today he can smile and express emotions in ways he couldn’t when constantly shaking and under heavy doses of muscle relaxants.
“I meet people every day that see the change. I think that’s awesome,” Hoffmann said.
As a teenager in Lafayette, Ind., Hoffmann endured botox injection treatments in New York that doctors thought would calm his spasms, but instead caused a staph infection.
And while Hoffmann was apprehensive about an open brain surgery, he underwent a procedure common to Parkinson’s disease patients called deep brain stimulation in May 2007.
In two surgeries, doctors at Swedish Hospital in Denver inserted screws to hold a plastic head plate placed to guided a surgeon’s drill and install two electrodes.
The electrodes go into the brain and fire electrical pulses that disrupt and control the over-active nerve pulses that cause Hoffmann’s spasms.
Wires from the electrodes pass beneath the scalp and down Hoffmann’s neck to the pacemaker installed in his chest that sends the electric impulses.
Hoffmann carries a remote control device used to monitor the current, and he goes to Denver for regular adjustments, he said.
Just one week after the two implant surgeries, Hoffmann went back to his job at Aspen Painting Inc. and the transformation has been gradual, he said.
“You see it day by day,” said Aspen Painting owner Roger Moyer.
Hoffmann started as a painter for Moyer in 2000, and while some company foremen at first balked at Hoffmann’s shaking, it was only a matter of days before they recognized his good work ethic and began requesting Hoffmann especially for jobs, Moyer said.
In fact dystonia didn’t stop Hoffmann from doing much, including getting a degree in history from Purdue University.
“There’s little he can’t do,” Moyer said, and Hoffmann became the painting company’s office manager in 2004.
After the surgery, Hoffmann’s left thumb locked, but progressive adjustments to the electricity have solved the problem and he’s seen steady improvement.
The shaking has stopped.
“I think socially it’s going to be a remarkable transition for him,” Moyer said, calling the advances in brain surgery and new options for Hoffmann “wonderful.”
“He’s noticeably stopped jerking and twitching and he’s straightened up,” his aunt Heidi Hoffmann said. “You can understand him so much better now. It’s quite remarkable.”
House-sitting for his aunt first brought Hoffmann to Aspen in 1999 and he stayed, finding work with Moyer, a rental at the Aspen Airport Business Center and later buying an affordable housing unit at Annie Mitchell Homestead.
Hoffmann’s aunt said she hopes the “incredible outcome” of the surgery will open him up to new avenues ” from cycling to golf or even driving a car now that his muscles are calm.
Hoffmann skied in Aspen in 1984 before the onset of dystonia, and he took up the sport again with the help of Challenge Aspen in 1999.
“I’m going to have to relearn how to ski because everything is new,” Hoffmann said.
And while Hoffmann has always loved playing basketball, today he’s really on his game.
Before the surgery he would use one hand to hold his head up as he set up for his jump shot, but now he stands tall at the free-throw line, cocks both hands high above his head and throws a dead-eye swish, something that is sure to impress his brothers on his upcoming trip home to Indiana.
Hoffmann’s mother died of cancer in 2005 and he said, “The only depressing thing about the surgery is she never got to see me like this.”
Hoffmann’s father and brother made a surprise trip to Denver after his first adjustment, when the effects of the procedure were just taking hold, Hoffmann said.
The oldest of seven kids, Hoffmann said no one from his family has seen him since the most recent, successful adjustment and he wants to photograph the reaction of his six brothers and sisters when they see him at the airport Tuesday.
“I’m booked-up with visits,” Hoffmann said, including stops to see teachers in the same elementary, middle and high schools he attended and where his siblings go today, as well as catching the classic football rivalry between Notre Dame and his alma mater Purdue Sept. 29.
But Hoffmann is going home with one ax to grind.
“I can’t wait for Tuesday,” Hoffmann said. “I’ve got a basketball game set up with my brother.”
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