Parkinson's Disease at 29, Man Opts for New Brain Surgery

Fear factor gone: Asleep deep brain stimulation benefits younger patients.

ByABC News
March 5, 2013, 6:45 PM

March 6, 2013— -- Tommy Zuleger was only 29 when the symptoms of Parkinson's disease first started: a shake in his right hand, problems sleeping and "aches and pains" that were unexplainable.

"The years went on and they got progressively worse," said Zuleger, a real estate executive from Phoenix. "I figured I had been hard on my body when I was younger. I thought my body was paying me back."

But by his 30s, he could no longer ignore the muscle stiffness, restless legs and increasing tremor. Zuleger's girlfriend watched a documentary on the actor Michael J. Fox, who was diagnosed at 30, and saw remarkable similarities.

"I blew her off, but she pretty much insisted that I go [to the doctor] to satisfy her curiosity and get looked at and see if anything is wrong," he said.

In 2009, Zuleger got the dire diagnosis at the age of 34, at a time when more Americans are being diagnosed with Parkinson's disease at a younger age.

"There were a lot of unknowns and that's what was really scary about it," he said. "It's one thing for the doctor to say you have cancer or a disease that's fightable. ... With this, there really is nothing they can do about it. It's going to take over."

But last October, Zuleger's life was transformed by what he calls a "sci-fi" procedure at Muhammad Ali Parkinson Center at Barrow Neurological Institute in Phoenix. He is among the youngest patients in the U.S. ever to undergo asleep deep brain stimulation (DBS) for treatment of Parkinson's disease -- a once-daunting procedure that was done only when patients were awake.

"I would do it again in a heartbeat," Zuleger said. "It's a scary proposition to have them digging around in your head. But it's been like night and day."

DBS has been an established treatment since the 1990s, but many patients who could benefit, avoid it because of the fear factor. Now, with more advanced tools, a handful of medical centers are operating while patients are under anesthesia.

The treatment is not a cure and the disease eventually progresses, but patients like Zuleger can see remarkable improvements in their tremors and muscle rigidity. When done early on in the disease, it can allow a patient to continue working.

DBS involves surgically implanting a medical device called a "brain pacemaker."

The neurosurgeon drills a hole in the skull and inserts an electrode about 4 inches into the brain. The electrode delivers mild electrical signals that disrupt and block the brain impulses that cause Parkinson's symptoms. A wire under the skin connects the electrode to a battery implanted near the collarbone.

"In the past, we treated patients who were disabled for whom nothing else worked -- it was the treatment of last resort," said Dr. Francisco Ponce, who was Zuleger's neurosurgeon. "When we treat patients earlier, they've had significant improvements in their quality of life occupationally and socially …. We can get them back in the game."

An estimated 50,000 to 60,000 new cases of Parkinson's disease are diagnosed each year in the United States, according to the National Parkinson Foundation. The average age for onset is 62, but one million Americans living with the disease -- about 10 percent of all patients -- are, like Zuleger, under 40.

A new study by French and German researchers published in February's online New England Journal of Medicine concludes DBS is more effective than medical treatment in patients with Parkinson's disease and early motor complications.