Tag: ALS

For 25 years, Tom Lange roamed the sidelines at Hibbing High School athletic venues, trying to keep Bluejacket athletes healthy and in the game as their athletic trainer.

But since last December, a whirlwind of events has taken Lange out of the game.

His daughter, Emily, noticed something was amiss with her father and some 10 months later, Lange has been diagnosed with ALS and frontal temporal dementia.

Lange has lost the ability to work with the athletes he loved so much, let alone fighting a battle to save his life.

“When Emily was home, she said, ‘Mom, Dad’s not right,’” said Julie Lange, Tom’s wife who is also an athletic trainer. “She went to spend Christmas in France with her sister, Kate, so she wouldn’t be alone. When she came back three weeks later she said, ‘Dad’s worse.’”

So Emily and Tom sat down and discussed going to see the doctor.

“He pinky swore that he’d go to the doctor,” Julie said. “They made an agreement that he’d go to the clinic to get a physical, which he hadn’t done in years. When she (Emily) came home that spring, he hadn’t done it yet.”

Emily made sure he kept that promise by taking matters into her own hands. She brought him to the clinic and said, “Either you’re going to make an appointment, or I am.”

“I’m sure, sheepishly, he made an appointment for a full physical,” Julie said. “He couldn’t get in until the end of April or early May.”

Tom kept the appointment and learned that his triglycerides and cholesterol levels were off the charts.

Julie had a talk with his primary-care physician, who said Tom might be having some silent strokes. An MRI was ordered.

The MRI came back negative, but they were referred to a neuropsychologist, who specializes in the nervous and psychological systems.

“When they did the mini-exam, they determined that he was beginning to show signs of frontal temporal dementia,” Julie said. “That meant he had to go through cognitive testing. We were blessed that it didn’t happen until the end of the school year last year.”

On July 1, Tom underwent a full day of testing in Duluth. Six days later, the Langes got the results.

“The results showed that he most definitely did have frontal temporal dementia, but to truly diagnose it, one has to go the Mayo Clinic for a PET Scan,” Julie said. “That tests show how your brain uses glucose.”

On their way back from Duluth, the Langes decided Tom would cease his athletic training career.

“He was having communication problems,” Julie said. “He couldn’t come up with words. He would use 20 standard pet phrases. Ninety-nine percent of the people who talked to him had no idea there was anything wrong.”

Julie said he looked good, but he didn’t return to school this fall.

“We chose to tell people he was fighting a communication disorder because he couldn’t talk to people,” she said. “He could do a full concussion evaluation and a full ankle evaluation, but he couldn’t communicate the results. That was heartbreaking.”

•••

The Langes headed to the Mayo Clinic for a week in late October. The PET Scan showed frontal temporal dementia, and more.

“They saw he was suffering from voluntary muscle fasciculations,” Julie said. “They shined a flashlight on his arms and legs, and you could watch his whole body twitch.”

After more tests, including an electromyography (EMG) and respiratory function, the Langes had an exit interview. That’s where they learned Tom has Amyotrophic Lateral Sclerosis, or ALS.

“How they explained it to us is that they’re not sure which comes first. It’s the chicken and egg,” Julie said. “He could have been having symptoms of neuromuscular disorder or ALS for years, and we never noticed it.”

Or it could have stated with the dementia, which also in this case, could cause the ALS.

“The only thing they know for sure is that they’re the same protein,” said Julie. “One attacks central nervous system. One attacks the peripheral nervous system. We have had a lot of big changes.”

Those changes have put all of the Langes plan on hold — at least for the moment.

“We are at a changing point in our lives,” Julie said. “On a day-to-day basis, I didn’t notice. At work, he worked with the same doctors and paperwork, and his focus was good. There was never an issue at work.”

It wasn’t an issue until Julie made it an issue, she added.

“We were blessed in that regard, that he did work as long as he did. I wish I could say I noticed, but I didn’t. I thought he was having a mid-life crisis or it was empty-nest syndrome.”

In the Lange’s home, there’s a sign that says, “The only thing you can control in your life is your attitude.” That has been put into play a lot since the diagnoses.

“You get up every day and have a good attitude,” Julie said. “We try to get through the day. Luckily, we’re able to do that. It’s a little different, but we’re still going with what Emily calls, ’The positivity train.’ Every day we get up, we’re doing what we can.”

They have a plan, and anytime that involves being involved in the community is a good day, she noted.

“It’s little harder for Tom,” she added.

•••

The Langes have reached out for support. The ALS Association has been there for them, along with Justin and Christyn May, who have been associated with the Blizzard Run, which raises money for ALS research.

Julie also reached out to Helen Baumgardner, whose late son, Mike, had ALS.

“Helen has been a world of support,” Julie said. “She was the second phone call I made when they said ALS. I called my neighbor and got her number within 15 seconds. I met with her. It took a good week or week and a half for Tom to even realize that that’s what they were saying. He kept going back to Mike Baumgardner.”

It didn’t take long for the Langes to receive all kinds of information on ALS.

“The ALS Association had information in our mailbox before we got home from the Mayo,” Julie said. That information included a list of fundraisers, which included the funspiel in Hibbing that Dave and Becky Pierret are putting on for the ALS Association.

“The first thing we can do as a family is support the ALS organization and whatever event we can be a part of,” said Julie. “There’s nothing medically or technology-wise we can do immediately for Tom. The only thing we can do is research. In order to do that research, the ALS Association needs our financial resources.”

That bonspiel will be held Saturday, Dec. 12, at the Hibbing Curling Club.

The theme for the bonspiel is Hibbing High School sports. They’re looking for pictures, posters and banners that say Hibbing High School them.

“We’re starting with that,” Julie said. “The ALS slogan is Team for Hope. We’ve gone ahead and ordered Trainer Tom’s Team for Hope t-shirts. We’ve entered a couple of teams. Hopefully, we can have more people and more support from the community for this event.”

The deadline to sign up for the spiel is Friday.

•••

It’s been hard for the Langes to cope, but they still go about their ordinary lives despite this road block.

“It all comes back to attitude,” Julie said. “We are blessed with a huge family. My mom (Clare Dulong) lives nearby. My uncle (Ray Jensen) helps out every day I have to work.”

Julie’s employer, Essentia Health, has also allowed her to alter her schedule so she can be home more.

“The high school and college understand that we’ve gone from two athletic trainers to one of us,” said Julie. “The coaches have stepped up at both schools as well as the athletic departments. You can choose to be happy because you have to, or you choose to dwell on the fact that it’s going to be over sooner than you expected. We’re choosing to be happy. I don’t know what the answers are, but we try to make every day as happy as we can.”

Gary Giombetti can be reached at ggiombetti@hibbingdailytribune.net.

ORIGINAL ARTICLE:
http://www.hibbingmn.com/sports/college_sports/life-changing-development-langes-living-life-to-the-fullest-despite/article_430024c2-98b0-11e5-bf36-3f1ae74b0bd7.html