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Relating to Wayne: Hockey and Parkinson's Disease

Originally published at Overtime, part of The Hockey Writers network.

Posted: July 20, 2012 | By Guest Author – Ross Bonander

In April 2012, word hit that Walter Gretzky had been diagnosed with Parkinson’s Disease (PD). Wayne Gretzky’s hockey dad–Canada’s hockey dad and the most famous hockey dad in the world–had PD.
For once, I could relate to The Great One.

I grew up playing youth hockey during the 1980s, not in Ontario or in Quebec or even New England, but in the remote outpost of Northern California. Today my old club is known as the Tri-Valley Blue Devils but back then we were just Tri-Valley. We played teams as far away as Fresno and Squaw Valley. We all wanted to be Gretzky but brushes with the wider world were rare. Peanuts creator Charles Schultz sometimes reffed games in Santa Rosa, and Alyssa Milano sponsored an LA team I once played against. At best, ours was a fringe league.

I had a hockey mom but my dad was the dominant hockey parent. Only one other kid I knew had a hockey dad like mine. Born and raised in Minnesota and having played into college, he introduced me to the sport when I was six. Although we lived in Minnesota and Montana, not until we moved to California when I was ten did I start playing competitively. Like any other hockey dad, mine logged long hours behind the wheel and rarely if ever missed a game. Unlike the long drives between games of Western Canada lore, my dad logged most of his miles in a three hour daily commute.

On the hockey dad spectrum, mine fell somewhere far from Arthur Béliveau (whose gentle advice to his son was to “Do your best Jean–it will be enough”) and closer to Walter Gretzky (who told the CBC’s National Magazine that he “just told him to play good,” an understatement that makes him and Wayne howl with laughter).

Yet as critical as he could be, my dad had a weakness: he was especially vulnerable to being disappointed by me. I could let him down in a single bound. Exceptions being in math grades and hockey, in every other area of life he was passive-aggressive to a fault, but get him looking at my report card or going over my last game and suddenly his advanced degree in statistical analysis reared its head.

This vulnerability to being disappointed went both ways. I didn’t like playing against the team out of Stockton because of a kid named Jeff Duck. Far and away the league’s best player–arguably the best in the state in our age group–he never failed to dazzle my dad. Name the tool, Duck had it in spades. On the drive home I’d hear all about it. Once, Duck’s skate blade got stuck between the ice and the boards; on one knee, he was trying to pull himself free when another player fell on his outstretched leg. His femur cracked like a tree branch, but driving home you would’ve thought the crack had been my dad’s hockey heart. I’m surprised we didn’t hang a USA Hockey flag when we got home so he could lower it to half-mast until Duck recovered.

In my third year, our Pee Wee AA team beat Fresno for the Northern California (NORCAL) championship, a moment captured in one of the only amateur photos I know to exist from those days. We earned a showdown in the Golden State Championship best-of-three against Burbank’s mighty California Golden Bears. Their offensive whiz kid wore #91, we were told, because that was the year he expected to be drafted into the NHL. We had never heard that kind of comment before–nobody brought up playing ‘California hockey’ even thought about the NHL back then–so if it was meant to get into our heads, it worked. Kind of.

In game one we were down 5-3 with a minute remaining, and won 6-5. In regulation.

We dropped game 2 as #91 carved us up. In the take-all final, we gave him a shadow on every shift and it was barely enough, as we tied the game with 12 seconds left and won it just minutes into overtime. It was only the second State Championship in Tri-Valley history. We were over the moon. We carried the trophy around the rink in what might have been one of the more ridiculous victory laps in hockey history, since three sides of the rink held neither seats nor spectators. We didn’t care. It was the greatest achievement of our lives.

For all the Al Bundy overtones to this story, there is a darker undertone. Nowadays I can’t recall many of those years in youth hockey without acknowledging a motif that, at the time, I did all I could to ignore: my hockey dad had Parkinson’s Disease.

PD is a progressive central nervous system disorder in which cells in the brain called neurons begin to malfunction and die. Many of these cells make the neuro-transmitter dopamine. The loss of these neurons results in the loss of dopamine and with it, the progressive loss of control over movement. There is no cure for PD. Existing treatments serve only to manage or relieve symptoms–tremors, muscle rigidity, impaired balance.

Today, virtually everyone who hears of PD thinks of actor, advocate, and hockey fan Michael J. Fox. His enormous impact on every aspect of the disease defies all hyperbole. Diagnosed in 1991 at just 29 years old, he went public in 1998. His fame, his charm, and his tenacity have effected a sea-change in the public perception of the disease.

Like Fox and about 15 percent of the over one million Americans living with the disease, my dad had young-onset PD. He first noticed symptoms in 1977, when he was 37. We lived in Minnesota then. That was the year he introduced me to hockey. He took me to my first NHL games at the Met in Bloomington, all miserable North Stars losses. He taught me to skate. He gave me my first stick, a wooden Canadien, ‘Guy Lapointe’ model.

As the symptoms became more noticeable (and he worked ever harder to hide them), he began visiting doctors. Parkinson’s has no biomarkers; neither scans nor blood tests can definitively tell clinicians anything, so he spent seven dark and confusing years plagued by a mysterious beast of intermittent tremor and rigidity in his left side that no doctor had an answer for. Finally in 1984, as our club was winning a State Championship, he got the diagnosis.

Difficult though it must have been, it was also a relief. His symptoms had a name. The name had a place in the medical literature. In things such as this, ignorance is no bliss, it’s terror and fear.

Soccer is the globe’s unifying sport not because it has some special combination of sportsmanship and athleticism but because it best identifies with the historical human condition of poverty. To play, all you need is a ball or something resembling one. Hockey by comparison is practically the sport of kings: league fees, equipment, travel, ice time–it all adds up. I rarely showed much appreciation for the financial and temporal sacrifices made by my hockey dad back then.

Post-diagnosis, Parkinson’s tore up my family. Escapism reigned as we all went separate ways. My brother began playing guitar religiously and chased heavy metal stardom. My mother started writing romance novels. I started playing better hockey. And my dad saw to it that I was playing better hockey.

He built a pulley system in our garage to allow me to raise and lower a thick rug to shoot pucks against. He sent me to power skating clinics where I don’t remember seeing a single puck hit the ice. In 1986 he sent me to Vancouver for two weeks to attend the Canadian Professional Hockey Schools. He pressured me to try out for the Northern California traveling team, and later, the short-lived Team California.

I made both, which delighted him. I dropped out of both too, which did not.

As the let-downs piled up, my dad still went to every game until I finished my second year as a midget, but no more post-game get-togethers for him. The post-game car ride critique vanished. The pressure was off me. By then his symptoms were well beyond concealment, and he had turned his attention towards the growing Parkinson’s Listserv community. Among hockey people it had never been a secret that he had Parkinson’s, but nobody talked about it. With my days at Tri-Valley at an end, the game that had always connected us became increasingly less important.

By 1993 his symptoms had gotten out of control. Fully immersed in the PD community, he flew to Sweden to undergo a unilateral pallidotomy. The procedure burns off a small area of the brain and its effects are staggering and immediate. Almost all of his symptoms disappeared. His left side returned to normal. It’s not a coincidence that hockey found a way back into our relationship.

That year I was a senior at UCLA and playing hockey for the Bruins. Today UCLA plays in the Pac-8 and is affiliated with the ACHA. Back then we played in the Pacific Collegiate Hockey Association, a confederacy of schools held together by a few beers. We had a secret weapon on our roster– an international transfer student from Finland named Tuomas Törmänen (today his brother Antti coaches Switzerland’s SC Bern). With Tuomas we were competitive. Without him we were lost.

Before the season started I needed a new pair of skates. For that I sought the approval of my hockey dad–namely, the approval of his credit card.

At the shop we were divided: I wanted one pair, he wanted another. He wouldn’t be taking a single shift in these skates and yet his pick won the day. One afternoon we had a game against one of the country’s most prestigious academic institutions, Cal Tech. When not helping NASA launch rockets, some of the students had a hockey team, and they were pretty good. I had to loosen the laces on those skates after every other shift to relieve the throbbing, painful pressure on my feet inside the boots. I just couldn’t admit that they were an awful fit.

Half way through the game, I tried to slip around a check. The guy barely got a piece of me but the piece he got was my left kneecap, now reassigned to the outside of my leg. I didn’t know you could experience that much pain and remain conscious. Paramedics came and laid me on the bench. My coach pinned back my arms; one medic held my feet down; the other medic cut off my sock and shin pad. Then he tried to punch my knee back into place. Three times. I stopped screaming long enough to string together a sentence.

“Loosen my f**king skates!”

When the Winter Olympics got underway, my dad was urging me to catch a broadcast of the Swedish National team; there was a guy named Forsberg who I just had to see play, he said. My dad was a full Swede, and the very common Forsberg name was in his family, so I didn’t think much of it.

In April of 1994, our team traveled to Stockton to play for the PCHA championship. My dad made the hour drive to see us play Pepperdine. I benefited from playing the off-wing on a line centered by the Fin Tuomas, but I was hardly at my best. That would be the last time he saw me play.

Eventually, most of the miraculous effects of dad’s pallidotomy faded away. Most of his symptoms returned.

He died in August of 1996. Along with PD he had asthma and early one morning a massive asthma attack took him down.

Unlike the testimony given so often in true crime television, where the last words two people share before one dies is some variation on “I love you”, our last exchange was unpredictably banal: Either I was at my parents’ house checking AOL email and he snapped at me for staying online too long and racking up fees, or we talked on the phone that night and I declined an invitation to play cards. I’ve never been able to remember which.

It took me years to come to terms with his PD diagnosis. And more years to come to terms with his death. I think that’s why it has taken me months to acknowledge Walter Gretzky’s diagnosis.

When he was 19, my dad stunned his parents by leaving college and joining the army. His own dad was a Lutheran minister and hoped his son would follow in his footsteps. Not until he found his voice on Listserve and in support groups did he become that minister, except he preached the principles of pressing doctors to pay attention, of being a smarter patient, of learning to find the right medication dosage, of overcoming the depression of disease and finding a way out of bed in the morning. He took anguished phone calls at two AM; created, wrote, printed and distributed a PD newsletter; he led support groups, gave presentations all over California, and took part in clinical trials.

Today his efforts are recognized by an award named after him given annually to a person who has made an exemplary contribution to the PD community. The award is presented at the annual Parkinson’s Unity Walk, a grass-roots fundraiser that began with 200 people and now involves well over 10,000 patients, caregivers, family, friends, volunteers, doctors, and advocates coming together in New York’s Central Park every April to raise money for and awareness of the disease. Consequently the name Alan Bonander has become a part of the wider fabric of the PD community.

Nowadays, Parkinson’s Disease has been unmasked. It is out in the open in and out of hockey circles, where we can at least talk about it and confront it, and a number of affected hockey people are lacing ‘em up for the fight:

  • Steve Ludzik, a veteran of 424 NHL games, has had PD for over a decade and has become an impassioned and outspoken PD patient advocate. Ludzik believes he developed PD after enduring repeated, undiagnosed concussions during his hockey career. (Could be. The topic is beyond the scope of this article.)
  • Nashville Predators’ former associate coach and longtime player Brent Peterson has PD and has become an active fundraiser in the PD community. He also underwent Deep Brain Stimulation surgery last year.
  • The disease is not entirely unfamiliar in Nashville, as Predators GM David Poile’s father, Hockey Hall of Famer Bud Poile, received the diagnosis late in life.
  • Former OHL goalie John Cullen recently wrote a moving, inspiring piece for Yahoo about his hockey dad’s PD diagnosis.

Hockey–a sport of precision, of lightening fast movements– seems incompatible with a disorder that prohibits speed and precision. But for me, as a kid playing youth hockey in the youth hockey equivalent of Timbuktu with a hockey dad who had a disease no one understood and no one wanted to talk about, the two incompatibles are impossibly linked. Seeing the old Islanders jerseys remind me as much of him as it does of hockey. A clip of Peter Forsberg reminds me not of Forsberg but of my dad.
Even lacing up a pair of old roller blades the other day and feeling the pain of an ill-fitting boot reminded me of him. It also serves as an appropriate closing metaphor: Hockey and Parkinson’s Disease go together like a big foot in a small skate, and for all the years I wanted to be Wayne Gretzky or to have something in common with him, this– hockey dads with a shared diagnosis– is never what I had in mind.

The singular upside is that today, fighting Parkinson’s is truly a team sport–a concept that father and son understand as well or better than anyone who ever played the game.

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