Health

Former Coulee Region Chill Coach facing toughest opponent yet

AJ Degenhardt living with Multiple Sclerosis

AJ Degenhardt's fight with MS

LA CROSSE, Wis. (WKBT) - AJ Degenhardt is a name that is synonymous with hockey in this community.

The La Crosse Logan grad and former head coach of the Coulee Region Chill has dedicated almost his entire life to the sport. But now, he's facing his toughest opponent yet, and it's taken him away from the game he loves.

Hockey players are known for being tough, not only physically, but mentally too. However, sometimes that toughness isn't enough to overcome what life throws your way.

"Right now, I'm probably at the worst point I've ever been," said Degenhardt. 

From the time he was just five years old, the hockey rink has been AJ's second home

"I've probably been able to skate better than I can walk. It's pretty much been my life ever since, it's all I've really known."

A standout player in high school for the La Crosse Logan-Central Co-op team, AJ went on to play junior hockey in Green Bay, then four years with the Wisconsin Badgers.

From College, AJ went right into coaching, including a 5 year stint with the Coulee Region Chill.

"Either playing in games or coaching games, I wouldn't have it any other way."

But now, at just 34 years old, AJ is forced to watch the sport he loves from the sidelines. The first sign something was wrong came in 2009.

"We were at Nationals actually and my vision just, it got really bad.  it was like really blurry in the one eye and it lasted throughout the whole weekend we were there," said AJ.

The blurriness eventually went away and AJ didn't think any more of it, until an incident when he was coaching Team Illinois less than a year later.

"I stepped on the ice with my skates and literally my right leg went this direction, my left leg went that direction, I dropped right to the ice and at that point I was like, 'I need some answers here.'"

An MRI showed he had 2 herniated discs in his back from his playing days, but rehab only seemed to make it worse.

More serious MRI's revealed what was really going on.

"He said I got to let you know, you have MS and for me at that point, it was a sense of relief, like something, a name was put on it and I knew what I had and knew what was wrong and didn't really know what it was at that point."

Multiple Sclerosis. AJ's dad, who was in the room when the diagnosis came, knew exactly what it meant.

"Emotional," said Tom Degenhardt.

Tom watched his own dad, AJ's grandfather, slowly succumb to the disease.

"Yeah, none of this that I'm seeing today is new, but it's hard when it's your son."

AJ is facing a harsh new reality. He now uses a walker to get around.

MS, by definition, causes the immune system to eat away at the protective covering of nerves which in turn causes communication problems between the brain and the rest of the body.

It's made everyday tasks a chore.

"Getting dressed, I usually have to have my parents put my shorts on or something like that. It's tough, even putting my deodorant on, it's a thing you take for granted," said AJ. "It's a very humbling disease in that respect."

Tom said, "It's hard to watch. He was pretty athletic so it's hard to watch, he could do anything he wanted to do and most of the time about the best."

The disease has gotten so bad AJ can no longer live on his own. He's moved back in with his parents at their French Island home.

Tom took care of his dad during his teen years and is now spending his retirement caring for his son.

"There isn't a thing I wouldn't do, I wish I had it instead," said Tom.

Once a strong, athletic young man with the world ahead of him, AJ is now fighting just to get up and face each new day. He spends most of his days in bed.

"If I walk from here into my bedroom, after I'm done with that, I feel like I ran 5 marathons in a row and I can't move even. It's a challenge to keep going and to want to get up and want to fight through it that day and I think that's the toughest part with it," said AJ.

On top of dealing with his health issues, AJ is going through a divorce. He has twin girls who are just under 2 who visit every couple of weeks. They're a bright spot in the dark days.

"They're one of the things in my life that are able to make me forget about my disease and make me focus on them and show my love for them."

AJ's spirits have also been lifted by the outpouring of support.

One of his former teammates at Wisconsin when they won the 2006 NCAA Championship started a GoFund me page to help pay for medical expenses. And AJ was overcome with emotion at a recent charity hockey game in Madison where he was honored by some big names in the sport who helped push the go fund me total to now more than $41,000.

"It's unreal what the those guys did there, I mean, I can't even put into words. I mean it's overwhelming, but in a good way, the amount of love that's been shown form that."

Hockey players are known for being tough. And this is one fight AJ's not about to give up on.

"You got to move forward somehow and continue your life, try to build on the stuff you can do and appreciate what you're still able to do," said AJ.

"I think you gotta have hope, if you don't have hope, there aint much left," said Tom.

AJ travels to Chicago every six months for a treatment that he's trying. It comes at a cost of about $50,000 every time and there's no guarantee it will work.

He's also going to start a new FDA approved drug soon so that's where he's focusing his hope right now.

If you would like to donate to AJ's GoFundme page, click here.


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