Peterson promoting awareness of Parkinson's

March 9, 2012

NASHVILLE -- When Nashville Predators associate coach Brent Peterson was first coming to grips with having Parkinson's Disease, old friend Cam Neely helped him to get in touch with actor Michael J. Fox.

Neely, now the president of the Boston Bruins and a former member of the Vancouver Canucks along with Peterson, got to know Fox as a teenager, as both grew up in British Columbia. Over the years, the relationship continued and Fox attended Neely's Hall of Fame induction in 2005.

Peterson said he had met Fox before Fox had made his way to Hollywood, but this was the first time they spoke after his Parkinson's diagnosis. Fox, who suffers from Parkinson's and has championed the cause of fighting the disease, gave Peterson some tough love. Peterson said they have talked three times since Peterson learned of his diagnosis.

"The first talk was the big one because that's when I was feeling sorry for myself and 'Why me?' and he said 'Quit being such a whiner and go do something about it,'" said Peterson, 54. "That's when we decided to do this foundation and these things. He was good. He just said, 'Quit feeling sorry for yourself.' So that's what I try to do now."

As a result, the coach established the Peterson Foundation for Parkinson's four years ago. Since then, the foundation has raised $600,000 for various Parkinson's-related causes, Peterson said. On Feb. 25, the team hosted a "Brent Peterson Appreciation/Parkinson's Awareness Night" during its game against San Jose and presented Peterson with a check for $25,000 from the team's ownership group, Predators Holdings LLC.

Peterson's struggle with the disease has been marked by both courage and fear. The disease works almost like wet cement turning solid over a period of years. Medically, it affects the way cells in the brain produce dopamine, a chemical that sends signals to the part of the brain that controls movement. Those who suffer from Parkinson's can lock up physically and suffer stiffness, slowness of movement and tremors. Before it could be treated with medicine, its victims became bed-ridden and died of complications.

Peterson said within the last year, he would require hours simply to get dressed, an activity he often could not perform without the help of his wife when his Parkinson's flared up. On game days, he'd have to leave the buttons on his sleeve or at the top of his collar undone until he arrived at the arena so his son could button them for him.

But his sense of humor never left him. When he completely locked up and he would have to shuffle his feet along the carpet of the team's offices, generating a static electric charge, Predators general manager David Poile said Peterson would warn co-workers, "Don't touch me or I'll electrocute you."

But beneath the humor, the disease was grinding down the quality of Peterson's life. He said it's always with you, 24 hours a day, seven days a week, even affecting sleep patterns.

One can imagine what such a lack of mobility would do to a hockey coach, whose job it is to skate around the ice and instruct players. In December, Peterson underwent a procedure at Vanderbilt Univeristy Medical Center called "Deep Brain Stimulation," which involves the implantation of electrodes in his brain. The electrodes are attached to a pacemaker-type instrument inserted under the skin in his chest.

The procedure has helped his mobility and quality of life immeasurably in recent months. Recently, he was seen playfully chasing a team employee through the media room during a pregame meal. Long-time coach Barry Trotz, who, like Peterson, has been with the organization since it entered the NHL in 1998 and calls Peterson a "good, good friend," jokes that now the coaching staff calls Peterson "The Rocket."

But before all that, Peterson had to deal with the fear the disease inspires in confronting it and what it would force him to give up. Peterson said when he was on the ice, Parkinson's left him frozen like a statue at times. He couldn't move out of the players' way when he locked up, forcing him into the sad realization that he presented a danger to the players and to himself.

"I would've died before I got off the ice," Peterson said.

At first, Peterson tried to hide the disease. Towards the end of the last NHL season, he finally had to give up coaching. Saturday is the one-year anniversary of the last time he was on skates, which he had laced up for parts of five decades. An on-ice collision with a player during a practice was the last straw.

"I couldn't get out of the way of anything," Peterson said. "I couldn't move. How can a guy be a statue and do the things an assistant coach has to do on the ice?"

So he resigned his position as associate coach. But the team has kept him on as a hockey operations advisor. He helps the coaches, the general manager and with community relations and corporate sponsors. He is ubiquitous in the locker room, coaches' offices and the front office. Poile calls him "Mr. Hockey here in Nashville."

"I'm happy to be alive and be here," Peterson said. "It's nice of David to keep me on. He calls me an advisor and advisors are never wrong, are they?"

He finishes with a devilish chuckle.

Electing for surgery

From playing 11 seasons in the NHL, Peterson knew a thing or two about injuries and was accustomed to surgery. The first time Peterson felt some restriction of motion -- his right hand locked up -- he thought he had a pinched nerve in his shoulder. People would ask what was wrong with his immobilized hand, but he'd respond that he couldn't remember how he hurt it.

He continued to try and hide the disease in this way for as long as he could and resisted visiting a doctor. But he couldn't hide it from his wife, Tami. When he finally did visit a doctor, he was told he had Parkinson's, but he chose not to believe it.

He disliked the first doctor's bedside manner, so when one of the team's players, Rem Murray, visited Dr. Tom Davis, an associate professor of neurology at Vanderbilt Medical Center, for dystonia, an involuntary contraction of the muscles, Peterson forced his way into Davis's office.

Peterson cannot remember exactly how long he kept his secret, maybe a year, but he finally went public after the 2003-04 season when the Predators qualified for the playoffs for the first time.

For years, Peterson was able to manage the disease in his daily life. But during last season, it worsened considerably. Once confined to his right side, it spread to his left. Each day he took 20 pills, dopamine being the chief one, to combat the disease's effects. And he often had trouble sleeping -- two hours or less a night, he said, a result that doctors told him arose from a combination of the disease and the medication.

"As the disease progresses, the response to dopamine is still good, but the duration of response from an individual dose shortens," Davis said. "You might have to take medicine every one to two hours. Also, there is a threshold at which the medications can cause involuntary movements in and of themselves, the random-type movements you might see Michael J. Fox make. Those are medication-induced rather than tremor, which is rhythmic."

For two years, Peterson's wife tried to get Peterson to undergo the operation for deep brain stimulation, but he demurred, believing that his case was not bad enough to warrant what he perceived as an extreme step.

But after his on-ice collision last year when he decided it was time to give up his coaching position, he relented. First, he had to learn if he were a candidate for the procedure. The fact that his medication helped his symptoms was in his favor.

As part of the test, he had to go three days without any medication. That was when he came to terms with just how badly the disease was debilitating him.

"That was a hard three days," Peterson said. "I couldn't move. I couldn't function. I couldn't get dressed. Everyone had to dress me. I was like a complete invalid, almost. I said, 'I don't need this. If I can't take my pills, I don't want to be like this. I don't want to take pills the rest of my life.'"

Deep brain stimulation

Deep brain stimulation has been around for about 15 years, Davis said, but recently doctors at Vanderbilt have made major strides in the procedure. Formerly, Davis said, a patient had to have a heavy-duty steel frame screwed into the skull and then bolted into the operating table. The procedure lasted 12 to 16 hours, during which the patient had to stay awake to make sure that the surgeons were placing the electrodes in the correct place to get the best response -- and that was just for one side of the brain; patients would have to return for another procedure for the other half.

Through a collaboration between Vanderbilt's neurosurgery department and its department of biomedical engineering, doctors have come up with a procedure that lasts between three and four hours during which patients can often have both sides of their brain operated on at once. They created a new, lighter device that allows the patient to remain upright and have some freedom of movement.

A video posted on Vanderbilt's Website that includes footage of Peterson's procedure shows him playing catch with Davis using a rubber ball during the operation.

"We moved from that (steel frame) to a carbon fiber platform that sits on top of the head, that allows the head to be moveable, so it fixes itself in reference to the skull, but the head can move around," Davis said of the technology.

Dr. Peter Konrad, Peterson's surgeon, also has a doctorate in electrical engineering and helped to create the device. A "pulse generator" is implanted in the chest.

Peterson, who was used to the physical pain inflicted by body checks and collisions during a long hockey career, said the recovery from the procedure, "hurt like hell."

"I didn't realize how hard brain surgery was," he said. "It was a tough go. It was a tough go."

But it has been worth it. In late December, the doctors turned on the pulse generator and began manipulating it to get the best results. As has been the case throughout his operation, Peterson had cameras following him to create awareness.
It was not always easy for him.

"Sometimes I was in a spot I didn't want to be in," he said, "but I had to do it. They saw me at my weakest."

The video on the Vanderbilt Web site shows Peterson locked up as he enters Davis' office the day he went to have the generator turned on. When Davis turns it on, a broad smile comes to Peterson's face. He walks out of the office more fluidly than he entered.
Peterson said the operation has been "amazing."

"It can change your life," Peterson said. "I can get up and shower and be dressed in about in 20 minutes now. It used to take hours."
He also is down to three pills a day.

Spreading the word

As a public figure, Peterson has tried to create awareness to help fight the disease, in addition to raising money for his foundation. He started with a fundraiser in the form of a dinner. Three hundred people attended the first one, then it increased to 500 and then 1,000. Next year, he said more than 1,000 people are expected to attend.

According to 2010 tax records filed with the IRS, his foundation made a $40,000 grant to Vanderbilt for Parkinson's research that year. He said the foundation also has begun making smaller donations, as well. Knowing what his wife has gone through in helping to care for him, Peterson has given donations for something called "respite," which helps caregivers have time away from the person they treat with Parkinson's.

"It's unbelievable how hard it is to be a caregiver," Peterson said.

He has tried to persuade friends he has met with Parkinson's to undergo the deep brain stimulation. Through the public nature of his fight, he said Vanderbilt informed him recently they had to hire three new workers to field calls because of potential interest in having the procedure. Davis said the Vanderbilt performs about 100 of the procedures a year.

And as Michael J. Fox once helped him stop feeling sorry for himself, so he, too, has helped others. Before coming to the Predators, Peterson coached the junior hockey team in Portland, Ore. He became friends with the agent for former NBA player Brian Grant, who played for Portland and Miami, among others. Grant, 40, also suffers from Parkinson's.

"I gave him the same talk (Fox) gave me," Peterson said. "He said, 'Why, why do I have this? It's unfair. Why me, why me?'"

Peterson said he challenged Grant.

"'What are you going to do about it? Are you going to cry? There's nothing you can do about it,'" Peterson said. "'You have it. Just go out and do something about it.' So he went out and started a foundation and now he does great work."

Peterson said that Grant attends his fundraising events.

Peterson said he doesn't care how big or small events are, he just wants to spread the word. He plans on attending a small event in Utah begun as a scout project by the son of a friend of his. The boy's grandfather died recently after suffering from Parkinson's.

"I'll take a couple of jerseys," Peterson said. "It's pretty cool because everywhere you go, you raise awareness. Whether it's fifty or a hundred people who come to that golf tournament, I'll show them a video of what I went through and they'll know all these things and they didn't know a thing before. If we don't raise any money, that's fine. We raise awareness. More people give me money that I never even heard about their situation. It's been great....

"We can do some real good around here. If I can raise enough money, we can find a way to cure the whole thing. That's the goal."