COLUMBUS, OHIO -- Jake Dowell shows up to the Wild locker room every day and sits in a far corner. As he joins his teammates and gets ready for practice, you’d never know the incredible weight he shoulders.
“Sometimes … you get choked up by the thought of what he’s going through,” coach Mike Yeo said.
Dowell’s father and only brother are dying. They’re both in the final stages of Huntington’s disease, a neurological disorder that over the course of a decade or more debilitates a person physically and cognitively until they die.
There is a 50-50 chance that Dowell, 28, a Wild checker who has played 156 NHL games, has inherited the same gene. In the next year or two, Dowell plans to go with his wife, Carly, and his champion of a mother, Vicki, to have a blood test and learn what his future holds.
The family’s harrowing story will be featured on ESPN’s newsmagazine program “E:60” at 6 p.m. Tuesday.
“Absolutely, I’m scared,” Dowell said. “It scares the heck out of me to look at my dad and brother and think that potentially one day could be me. I try to be realistic about it, but I also have kind of gone numb to the whole thing. I don’t get really emotional about it anymore.”
Symptoms of Huntington’s disease typically manifest themselves in the mid- to late-30s and 40s.
Dowell’s father, John, 58, who used to own a collection agency and played college football at Wis.-Eau Claire, was diagnosed 11 years ago. Dowell’s brother, Luke, is only 30.
There is a 24-hour assisted-living house in Menomonie, Wis., owned by a husband and wife nurse team. John and Luke are two of the four patients.
“We put my dad on a feeding tube this past summer,” Dowell said. “But now, he’s starting to get delusional. Dementia’s kicked in. He can’t do anything for himself. You can’t understand him. He used to be a big man. Now he’s dwindled down.
“My brother had an early onset in high school. It’s really rare. He is bipolar and schizophrenic. If I go see him, I’ll say hi and he’ll give me a hug and he’s right back into just talking to himself, just kind of in a trance and he’ll just stare in the distance. He’s still walking, but not very well. He’s extremely skinny. He’s lost his teeth.
“Some days, it’s harder to say who’s in worse shape because my dad and brother have completely different stuff going on.”
Huntington’s disease is hereditary, and the family has traced it back to Dowell’s paternal grandfather. John’s father committed suicide when John was a child.
“A lot of people with this disease commit suicide,” Dowell said. “Depression is a part of it. You don’t want to be helpless. It’s a long, drawn-out thing. It’s not like the late stages of cancer. It’s something that slowly kills you. It’s an awful decade or more process.
“I either have the gene or I don’t. I just haven’t needed to know yet.”
That’s because the Dowells haven’t tried to have children. But they want to, so they need to know if Dowell has the gene; if he does, there’s a 50-50 chance their children would inherit it.
“If I have the gene, we can do in vitro [fertilization],” Dowell said. “They have isolated the gene, so they can literally take that gene out of the sperm and it’ll be out of my family for good … if I do have it.”
Dowell’s mother tells him that when she looks back at her husband in his late 20s, even then he had some “goofy tendencies that now make sense, and I don’t have any of that stuff.”
Dowell says his wife is scared, “but she’s at peace, no matter what happens, that we’ll do the best we can. It’s helped for her to see my mom be so strong about all this and take on more than I think a normal person could do.”
Vicki Dowell was her husband’s caregiver for a decade. But physically, she could not get her husband in and out of his wheelchair anymore. She would try to get him onto a toilet or into a shower, he’d fall and take her down with him.
“Her health was deteriorating and finally I said, ‘Mom, we have to get Dad into a facility. I’m going to lose you before I lose Dad and Luke potentially if we don’t,’ ” Dowell said. “I’ve seen her age quite a lot, but she’s doing a lot better now.”
Hockey provides an escape
Wild defenseman Ryan Suter and Dowell were groomsmen in each other’s weddings. They played together in Ann Arbor, Mich., for the U.S. development team from 2001-03 and were roommates at the University of Wisconsin in 2003.
“Just two guys from Wisconsin and we’ve been best friends ever since,” Suter said. “I knew John when he was big and strong, and he was just the nicest guy, just like Jake — kindhearted, would do anything for you. It’s just terrible and Jake’s got a lot to deal with.
“I think hockey’s a good escape for him. He can come in here and joke around and leave all that stuff outside the rink for a little bit.”
Dowell has played for three NHL teams and spent most his career in the minors.
He played only two games for the Wild last season and 37 for Houston. But he has a one-way contract this season, giving him an inside track to making the team because he’d have to be paid his $700,000 salary in Iowa.
Dowell has found a niche — he’s strong in the faceoff circle, reliable defensively, a good penalty killer, physical and will fight for his teammates.
“I think it’s safe to say this is the most important year of my career,” Dowell said. “I want to earn some trust in a coaching staff that really hasn’t seen me play a lot. I want to get myself in this league for good.”
Yeo calls Dowell an “amazing professional” the way he’s able to handle the stress of his personal life.
“I don’t want pity or anything,” said Dowell, who is involved with the Huntington’s disease Society of America. “I talk about it because I want to raise awareness to find a cure. I want to get funding to find a cure for this awful disease. Nobody should have to suffer through what my dad and brother are suffering through.”