Former NHL forward Jake Dowell carved out a pro hockey career for himself, but he and his family had to deal with the devastating effects of Huntington's disease affecting his father and brother. In THN's May 2, 2011 issue, Dowell gave the public a window into the suffering he and his loved ones endured.

Being an NHL player doesn’t make you immune from the often-terrible twists of fate that strike everyday people. And in this cover story from THN’s May 2, 2011 edition (Vol. 64, Issue 23) senior writer Ken Campbell chronicled the health struggles of the family of former NHL forward Jake Dowell.

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Dowell carved out a pro hockey career as a blue-collar center with the Chicago Blackhawks, Dallas Stars and Minnesota Wild. But his family was deeply affected by Huntington’s disease, a neurodegenerative affliction in which someone who suffers from it slowly sees their ability to function whittled down until they’re paralyzed. Dowell’s father, John Dowell, and his older brother, Lucas Dowell, both were diagnosed with the disease. Given the genetic nature of the disease, Jake Dowell was concerned he might one day get the same diagnosis, although he tested negative for it in 2015. Even the smallest muscle spasm had him fearing the worst.

“It used to scare the heck out of me because it would happen all the time,” Dowell told Campbell. “I would just think to myself, ‘I’m doomed.’ ”

Dowell’s father required round-the-clock care for him beginning in his mid-fifties, and though his mother, Vicki Dowell, tried to reassure her son he wasn’t going to suffer the same fate, Dowell couldn’t help but be concerned he’d be next.

“She can be as sure as she wants,” Dowell said, “but that doesn’t make any difference. I always kind of expect the worst and hope for the best.”

Jake Dowell and his family, friends and teammates have done yeoman’s work in raising funds to fight Huntington’s disease, and he was honored by the American League in 2013-14 with the Fred T. Hunt Memorial Award, recognizing the player most exemplifying sportsmanship, determination and dedication to hockey. Dowell has avoided the Huntington’s prognosis, but he told Campbell that spiritual and professional balance was the best way to cope with the specter of the disease.

“There are times when I’m on top of the world with hockey and I have times where I think it can’t get worse with my family and they’re absolute polar opposites,” Dowell said. “I try to make sure I stay in the middle as much as I can.”

LIVING ON THE BRINK

By Ken Campbell

May 2, 2011

The nasty scar over Jake Dowell’s left eye was, like almost all the road maps NHL players wear on their faces, well-earned. It required 40 stitches to close, including the ones under the surface of the skin. The gash itself went right down to the skull. He missed three shifts while the medical staff worked to stem the blood flow and reattach the flap of skin.

As the Chicago Blackhawks were furiously chasing a playoff spot in late March, Dowell found himself caught up in a battle along the boards with Jarkko Ruutu of the Anaheim Ducks. Ruutu grabbed Dowell from behind in a bear hug and, as the two players fell forward, Dowell recalls the feeling of powerlessness in the split second prior to him slamming his head against the ice. Ruutu had been holding both his opponent’s arms, preventing Dowell from breaking his fall.

For that brief moment in time, Jake Dowell experienced the kind uncertainty, fear and sheer helplessness his father, John, and older brother, Lucas, face almost every day. There are some nights when all 270 pounds of John Dowell falls out of his lift chair and he’s as helpless as his son was when he was tackled by Ruutu.

There are just as many days when the voices in Lucas Dowell’s head simply won’t go away no matter how many doses of medication he takes.

And there are the days when Jake Dowell has what he describes as “pity parties.” Sometimes he’ll walk around the suburbs of Chicago for two hours with his dog, resenting the fact he was cheated out of normal relationships with his father and brother. Then there are the days when Dowell worries about his own mortality and the fate of his children, should he have any.

As an elite athlete, Dowell often experiences muscle twitches, particularly after a long workout. For Dowell, an uncontrollable and involuntary twitch of the finger or a quadriceps muscle while sitting on the couch could be nothing more than the product of an overworked body. Or it could represent the presence of a rare genetic disease that will rob him of his body and mind before it slowly kills him.

“It used to scare the heck out of me because it would happen all the time,” Dowell said. “I would just think to myself, ‘I’m doomed.’ ”

It’s an awful lot of weight to carry around for a 26-year-old NHL rookie, one who is finally finding his way in the best league in the world. After graduating from the University of Wisconsin, Dowell slugged it out for three years in the minors and sometimes felt as though he was buried there for good. But the combination of his perseverance and the Blackhawks’ cap constraints finally gave him the chance to fill a role on the fourth line and kill penalties, both of which he has embraced with evangelical zeal.

Some nights he plays 15 minutes, some five. On a team that’s not known for its toughness, he leads the Hawks with nine fighting majors this season. That’s one more than enforcer John Scott, to whom Dowell surrenders eight inches and more than 55 pounds. Dowell has played much of this season with a broken bone in his ankle and a sprained meniscus in his knee, but those are minor annoyances when you consider what he has endured.

To see and speak with him, you wouldn’t know the trials Dowell has encountered on his path to the NHL. After all, it’s not as though it’s a topic of regular conversation with his teammates, some of whom know almost nothing about his personal and family history.

But for the better part of the past decade, Dowell has lived with the specter of Huntington’s disease, a genetic disorder in which nerve cells in the brain are irreparably damaged, causing various parts of the brain to deteriorate. Once the disease sets in, a person’s abilities to walk, think and reason are slowly stripped away as the body and mind continue to decline. Finally, it gets to the point where the patient is effectively paralyzed and must be fed through a tube. It can last 10 to 20 years before the patient eventually dies, usually of an infection or starvation or sometimes suicide. Some describe it as the worst of Lou Gehrig’s, Alzheimer’s and Parkinson’s.

“No disease is better than the next,” Dowell said, “but this one is as bad as it gets.”

It has already taken hold of his 55-year-old father, who can no longer speak clearly and relies on 24-hour care, most of it from his wife and Jake’s mother, Vicki. The disease almost always begins to manifest itself somewhere between the ages of 35 and 55, but there can also be juvenile-onset Huntington’s, which brought on bipolar schizophrenia in his 28-year-old brother and confined the young man to a group home near his parents in Eau Claire, Wisc.

On top of all that, Jake Dowell could be carrying the Huntington’s gene around with him right now.

Those whose parents have the disease have a 50 percent chance of developing it themselves, but Dowell has yet to be tested. With a marriage to fiancee Carly Sturges on the horizon in the summer of 2012 and children sometime after that, Dowell is well aware the time is nigh when he must find out the reality one way or the other. If a person is carrying the gene, there is a 100 percent chance he or she will ultimately get the disease.

Vicki Dowell says she knows in her heart Jake isn’t carrying the Huntington’s gene, which actually doesn’t provide a whole lot of comfort to her son, even when he’s feeling optimistic.

“She can be as sure as she wants,” Dowell said, “but that doesn’t make any difference. I always kind of expect the worst and hope for the best.”

The way Dowell sees it, had the disease been juvenile-onset, he would have been suffering with it by now. And if it surfaces at the stage of life it does for the vast majority of those who carry the gene, that still leaves him at least 10 years in which to enjoy life and carve out a lucrative and rewarding NHL career. And even though there is no cure, nor is there one on the horizon, modern medicine and stem cell technology can move very quickly.

On one hand, many people in Dowell’s shoes would want to know their fate. But others who are at risk of carrying the gene don’t want to know, arguing there would be little motivation to even get out of bed in the morning knowing they would ultimately be rendered an invalid. But after telling his mother repeatedly as a teenager, “that he wouldn’t have a test tube baby,” Dowell has decided he will find out before he and Carly have children. The technology now exists where even if a man is carrying the gene, it can be weeded out from the sperm for the purposes of in vitro fertilization.

As you can see, Dowell’s situation isn’t exactly the grist for light dressing room banter. His teammates know about his situation peripherally, but there are few people to whom he really opens up about it. One of them is Los Angeles Kings defenseman Davis Drewiske, Dowell’s best friend and teammate from the 2005-06 Wisconsin Badgers team that won a national championship and graduated seven NHL regulars. Another is Blackhawks veteran backup Marty Turco, who freely admits he’s totally unqualified to render advice on what Dowell should do.

“You can’t put yourself in somebody’s shoes, you can just be there for them,” Turco said. “I don’t think I can intelligently begin to guess. It’s got to hit you right in the face and it has hit him right in the face.”

Growing up in Eau Claire, Dowell enjoyed a typical midwestern childhood full of sports. John, a former Division III lineman for the University of Wisconsin-Eau Claire football team, was the kind of father who coached his sons in every sport and was intensely involved. Part of the reason was his own father battled alcoholism and depression until committing suicide at 35. John’s grandmother had a severe nervous condition that went undiagnosed and untreated. It was only after John’s Huntington’s diagnosis in 2002 that the family connected the genetic dots.

John co-owned a collections agency and Vicki was a special education teacher. Jake worshipped his older brother and was motivated in hockey to be as good as Lucas was. The two were best friends who would do typical brother things like horse around in the water at the cottage and endlessly recite lines from their favorite movies.

When Lucas hit 14, everything changed for the Dowells. He started leaving school unannounced and bolting from his bedroom window at night. Right around the same time, John formed from being an optimistic and hard-working provider to an ill-tempered, angry and brooding man.

Because Vicki had to call police when Lucas disappeared, he became entangled in the penal system and was branded a pe-juvenile delinquent.

Vicki suspected mental illness, which Eau Claire’s district attorney – whose son once played hockey with Jake and Lucas – told a judge he was faking. When Lucas was 17, he was diagnosed as a bipolar schizophrenic, but it wasn’t until six agonizing years later that it was tied to the juvenile onset of Huntington’s disease. While still functional, Lucas often hears voices and mumbles to himself almost constantly. His IQ is now in the high 70s and his capacity to learn anything new has essentially been wiped out.

Lucas’ problems were exacerbated by the fact John, for reasons nobody could figure out, was going through drastic changes in his own personality. He would threaten to divorce Vicki over the most insignificant things and generally walked around with a scowl on his face. One day he decided arbitrarily that he could no longer work with his business partner and sold out his half of the business he had worked 20 years to build. He tried several other ventures, but essentially lost most of his money.

There was a time when John was so aggressive and moody that Vicki told Jake she was going to leave her husband, but Jake pleaded with his mother to stay because of all the upheaval in his life. Three months later, John was diagnosed with Huntington’s.

“Here I am pulling back in my relationship with (John) because I can’t cope anymore,” Vicki said, “and then I find out he has this illness and I have to throw myself back into what I need to be for him. It was really hard.

Right around that time, Jake left to join the U.S national team development program in Ann Arbor, Mich., and hasn’t lived at home on a full-time basis since. Being shielded from the day-to-day struggles of Huntington’s has probably helped him to focus on his hockey career, but the guilt of it all weighs heavily on him at times. The same night Jake was kicking back in a boutique hotel in Montreal preparing to play the Canadiens, Vicki was back in Eau Claire feeding her husband, giving him his meds and taking him to the bathroom.

“I think about that quite a bit actually,” Jake said. “That’s been one of the hardest things the past couple of years. There are times when I’m on top of the world with hockey and I have times where I think it can’t get worse with my family and they’re absolute polar opposites. I try to make sure I stay in the middle as much as I can.”

Until Jake went home to visit at Christmas, he was strong enough and his father was capable enough for Jake to take him to the bathroom without his father going from the lift chair to the wheelchair to the toilet. But now John has almost zero coordination and strength. Most days are spent sleeping and eating, with the exception of the nights the Blackhawks play, nights for which John lives. Trying to carry on a conversation with John if you don’t already know him is impossible. It’s like speaking to a toddler whose parents seem to be the only ones who understand what he’s saying and can repeat it back to you. The fact he can no longer use the toilet without help and has to have a baby monitor in his bedroom so Vicki can hear if he falls means she is essentially caring for a 55-year-old infant.

John will ultimately die of this disease, but at the moment his heart, kidneys, lungs and liver are in perfect working order. Although he is beginning to have trouble swallowing, he could conceivably live up to another 10 or 15 years. He will have to be institutionalized at some point, but Vicki, who teaches part-time at Wisconsin-Eau Claire, wants to keep her husband at home as long as she’s able to cope with the physical and mental demands of caring for him. Many with Huntington’s eschew a feeding tube and die; both Jake and Vicki are unsure what John will decide.

“I hope that when he gets to the point where he can’t eat food anymore that he’s deteriorated enough to not want to (have a feeding tube),” Vicki said. “I don’t want that for John, but if he can talk to me and tell me that he can’t eat, but still wants to be alive, I can’t tell him he can’t do it.”

All of it makes for a perilous future for everyone involved in the Dowell family, including Jake’s fiancee. One of Jake’s biggest fears through college was how he would ever meet someone who would be on board in dealing with all of this and not be scared off. After all, Vicki Dowell never signed up for any of this, but Jake’s potential life partner would be fully aware of the potential and real problems that come with the disease.

Carly and Jake met through a mutual friend during Dowell’s first pro year with the Rockford IceHogs of the American League and have been together ever since. She has already decided regardless of what the result of the Huntington’s test ultimately is, Jake is the person with whom she wants to spend the rest of her life. Jake was upfront about the situation early in their relationship and Carly realized early it would be something they would overcome together.

“It didn’t take me long to realize I wanted to be with him,” Carly said. “Right from the beginning, I realized he was a special person and I knew I wanted to be with him every second I could. I was worried I might have scared him, actually.”

On the ice, things couldn’t be going any better for Jake Dowell. Blackhawks GM Stan Bowman made numerous trips to Rockford over the past couple of years to convince Dowell he was still in the Blackhawks’ plans. Dowell was named captain of the farm team a year ago and has made himself an invaluable role player for the big squad this season. It’s an enormous year for him, though. He’s finally earning NHL money, albeit just $25,000 more than the league minimum of $500,000. He’s due to become a restricted free agent this summer and has set himself up for a longer-term deal at better money. Bowman has expressed a desire to keep him in the organization.

He is well-liked and respected by his teammates, largely because he does a lot of dirty work for the Hawks. Turco, in fact, said he’s one of those versatile, hard-working players that teams wonder how they can live without. Chicago has not pressured Dowell to get tested, nor did Bowman say his uncertain long-term future would ever affect the organization’s plans for him.

One thing Bowman is most impressed about with Dowell is how well he has been able to put everything aside to concentrate on playing hockey. He said that while Dowell had his moments of doubt playing in the minors, because he was doing everything asked of him and still not getting called up, he never complained about his situation and, instead of becoming sour, worked his way up to being captain of the team.

Bowman, who was instrumental in drafting and developing Dowell, knows all about health-related uncertainties. In 2007, at the age of 33, he was diagnosed with Hodgkin’s lymphoma and has since battled the illness into remission on two occasions. Last season, the father of Hawks right winger Troy Brouwer suffered a brain aneurysm just prior to the team’s Stanley Cup run.

“I think I can identify with the fact that you’ve got to deal with it, but you can’t let it affect your job,” Bowman said. “I never did and Jake feels the same way. You can expend a lot of energy worrying about things you ultimately have no control over and that’s a lot of wasted energy. You take your treatments and stop feeling sorry for yourself and get on with it.”

As optimistic as Vicki is that her son will live a long and full life, she has contemplated how she would deal with a positive test.

“It would devastate me,” she said, her voice cracking. “It would be the last straw. It would be taking away the one thing in my life that I still have left.”

John will continue to look forward to the days when his son plays with Chicago and he can watch the games from his living room recliner. There are plans for the Blackhawks to sponsor a Huntington’s fundraiser next season and everyone is hoping John will be able to attend the game. If he does, it will almost certainly be the last time he ever watches his son play live. These days Lucas is clumsy and has trouble with manual dexterity, but it will get worse as the years pass. Then will come Jake’s life-changing decision to get tested, likely within the next 18 months.

“I’m pretty humble, anyway,” Dowell said. “But this has all been a pretty humbling experience.”

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