ALS patients use battery

Dec 13, 2023

ON ISLAND LAKE — Todd Lauer struggled to twist the cap off a plastic water bottle, his arms and hands now weakened after eight years battling amyotrophic lateral sclerosis, ALS.

"They aren't that tough, it's that I'm that weak,’’ Lauer said as he finally got the cap off. "It's tough not being able to do the little things I used to do... Like not being able to get the gas cap off when you pull up to a gas station."

But Lauer was having no problem reeling in walleyes Saturday, June 3, on this big reservoir north of Duluth, thanks in part to a battery-operated, push-button fishing reel that did the reeling for him.

"I can't reel very much now, but this is working great,’’ Lauer said as he jigged a minnow while standing on the deck off a drifting pontoon boat. "I just don't have enough strength in my right arm any more to reel."

Lauer used both arms to cast out and then could press a button to bring back his line, hopefully with a fish on the end.

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Lauer's reel came from the Courage Kenny Rehabilitation Institute-Northland adaptive outdoor sports program which this year received a $50,000 grant from Hermantown-based Never Surrender, the parent nonprofit organization that oversees the Kolar Toyota ALS Fishing Tournament held Saturday, June 3, on Island Lake.

"It's great we can come down and be part of this tournament. But it's all the people who are raising all this money who are the reel heroes,’’ Lauer said.

The 28th annual fishing tournament saw 103 teams fishing on Island lake that day, with another 19 teams competing virtually from other lakes. The first tournament was held in 1995 and raised $40,000 to battle ALS, an always-fatal progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. It's commonly referred to as Lou Gehrig's disease.

Since that first year, the tournament has raised more than $4 million. This year's event raised a record $284,000 and all proceeds go to assist individuals living with ALS and to research a cause and cure.

That includes the $50,000 grant to Courage Kenny which, in addition to automatic fishing reels, was used to purchase adaptive electric/pedal tricycles that ALS patients can use.

Lauer is going to ride one of them in this summer's inaugural Tomassoni Tour bike rally on the Iron Range, also a fundraiser for ALS and named after former state Sen. Dave Tomassoni, of Chisholm, who died last year from the disease.

Lauer, 57, a bank auditor when he's not fishing, lives in Iron. He was diagnosed with ALS in 2015. He's already long surpassed the average life expectancy of an ALS diagnosis of 2-5 years.

"When they diagnosed me at the Mayo Clinic they said, ‘Get your affairs in order because you’ll be gone in five years,'" Lauer said. "That made me mad … I’m still going."

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Just down the lake, on another pontoon boat, Alan Peterson, of International Falls, was using the same kind of automatic-retrieve reel. And he, too, had caught a couple walleyes with it.

"It's alright. It's working,’’ said Peterson, who was diagnosed with ALS last November.

Peterson was the keynote speaker at the Saturday, June 3, banquet in the UMD fieldhouse where tournament anglers gather to celebrate their catch and celebrate the money they helped raise to battle ALS.

Two other automatic reels were being used by other anglers as part of Courage Kenny's annual adaptive fishing event that‘s now been moved to coincide with the ALS fishing event.

Lauer said things that most healthy people might take for granted are the things he gets most often frustrated with as his ALS advances — like struggling with traditional fishing reels and "not being able to start a lawnmower’’ or work on small engines or cars.

As motor neurons degenerate and die from ALS, they stop sending messages to the muscles, which causes the muscles to weaken, start to twitch and waste away. Eventually, the brain loses its ability to initiate and control voluntary movements.

Lauer says he's taking two drugs to help battle the impacts of ALS and tries to eat healthy and remain active.

"Stress is a really big deal. Avoiding stress is important for me. And fatigue. I get tired really easily now,’’ he said. "And it affects everyone in the family ... It's hard on everyone. I can't do what I used to do."

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Lauer praised the effort of everyone involved in the fishing tournament as they raised money not just for projects and tools to improve the quality of life for ALS patients across the Northland but also to fund research to someday find a cure. The entry fee for competitive anglers was $250 per angler for the Island Lake event and $200 for the virtual event. But anglers were encouraged to solicit donations beyond the entry fee, and the biggest money-raisers topped $6,000 each.

"What a great group of people,’’ Lauer said of the anglers, tournament volunteers and the Never Surrender program staff. "I can't believe how many people care, how dedicated they are to find a cure for this."

The fishing tournament is organized by Never Surrender, the Hermantown-based group that also operates the Black Woods Blizzard Tour snowmobile rally in winter and the new Iron Range bike ride called the Tomassoni Tour, both also aimed at raising money to battle ALS. Over the past 28 years the events have raised more than $20 million combined. For more information go to neversurrenderinc.org .

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