(PHOENIX) — 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.
DBA surgery was developed in the 1980s and approved by the Food and Drug Administration in 1997. To date, about 100,000 patients have been treated worldwide using the awake method, according to Ponce, who was the second in the world to perform asleep DBS.
Before, the patient was awake and on the operating table for four to six hours, “sometimes even longer,” just to map the correct areas of the brain, Ponce said.
“It was very uncomfortable for the patient and an enormous barrier, knowing what you are facing with your head secured on the operating table awake for the procedure,” he said.
Now, about 1,000 have had asleep DBA surgery, which has “increased comfort for the patient,” he said.
When Zuleger was initially diagnosed at St. Joseph’s Hospital and Medical Center, a part of Barrow, he was put through two and half hours of testing his mechanical body movements. Doctors drew “more blood than I can remember — in 20 different containers,” he said. In the absence of a definitive test, Parkinson’s disease is diagnosed when other conditions have been ruled out.
Meanwhile, Zuleger’s primary doctor had put him on levodopa, the same medication used to treat Parkinson’s, to treat complaints of restless legs syndrome. But when the neurologist took him off the drug during testing, Zuleger got worse than even before he started the levodopa.
“My girlfriend said it was kind of like someone going through withdrawal, like a crackhead,” he said. “You take it away and the body kind of freaks out.”
When the diagnosis of Parkinson’s was determined, it was a rude “wake-up call” for Zuleger.
“I had very young kids and my girlfriend and I had just started dating,” he said. “I had always been under the impression that I am young, and I will work forever, able to do whatever I want.”
Soon the levodopa stopped working and he had to increase its frequency. Higher dosages can have side effects like dyskenesia or uncontrollable twitching.
“The medicine is a nightmare,” said Zuleger. “I ended up losing 30 pounds over six months.”
Zuleger considered surgery, but the thought of being awake scared him. “When they started doing the sleep version and they could knock me out,” he said, “hell, I am all for that.”
The first surgery was four hours long. Much of it was prepping the brain, mapping and taking MRI images. The actual drilling and placement of the probes took an hour and a half. He returned a week later for his surgeon to pull the wiring down from his head to hook up to a battery pack beneath his collarbone.
Today, the girlfriend who pushed Zuleger to seek medical attention is his wife. They married last July and now share four children between them from previous marriages, aged 15 to 11.
At 38, he continues to work. Zuleger is still on medication, but less frequent doses. The “severe ups and downs” are gone.
After his first surgery Zuleger struggled with cramps in his muscles and had to take two to three warm baths a day to relieve the pain and wondered, “Did I do the right thing?” he said.
But after the second surgery, all the cramping disappeared and one week later, he took his daughter to Disneyland. When he returned, doctors turned on the system.
“Literally, within a couple of seconds, after they turn it on, it’s a hard sensation to describe,” said Zuleger. “Within a second or two, I feel my body start to relax.”
He goes back to Barrow every two to three months for programming, which coincides with his regular doctor’s appointments.
“It’s shooting an electronic impulse into the brain to trick it into thinking there’s dopamine there and you respond to it,” Zuleger said.
A day later, he really noticed a difference.
“I can remember my wife saying, ‘Wow, it’s pretty amazing — I didn’t hear you walking around,'” he said. “Normally, I drag my feet and am real choppy until my medicine kicks in.”
Perhaps, more importantly, Zuleger feels positive about his life.
“This last six months or so has been a pretty incredible journey,” he said. “The difference is amazing.”
To learn more about a fundraising event to benefit the Muhammad Ali Parkinson Center on March 23, starring Jennifer Lopez, Steve Martin and The Steep Canyon Rangers, Billy Crystal, Billy Ray Cyrus, Rita Wilson and much more, go to Celebrity Fight Night.
Copyright 2013 ABC News Radio
Assil Frayha, CNN
Amberlee Lovell, FamilyShare
Michael H. O’Donnell, Idaho State Journal
AJ Willingham, CNN