ALS hits MI hard, patients push for awareness

Kent County

ADA TOWNSHIP, Mich. (WOOD) — A deadly disease that’s puzzled doctors for decades appears to be hitting Michigan harder than most states.

No one knows how Amyotrophic Lateral Sclerosis (ALS) starts, but it almost always ends in death.

ALS, also known as Lou Gehrig’s Disease, ruins communication between a person’s nervous system and muscles.

As muscle weakness spreads, ALS patients lose their ability to move, speak, eat, and eventually breathe.

For two lifelong friends, that’s their reality.

‘No way would it hit so close to home’

Sherry Schuen and Sheri Vanderlugt met in middle school.

They grew up on Torrington Road in Kalamazoo.

“We lived right across the street from each other. We did walkie-talkies from our bedroom windows,” Schuen said while cheerfully reminiscing from the serene back patio of Vanderlugt’s Ada Township home.

It has been decades since they graduated high school together, but they’ve managed to squeeze in trips and visits together annually.

They never predicted they’d be two of three women from their childhood street receiving the terminal three-letter diagnosis: ALS.

“You’re always hopeful that it’s going to stop,” Vanderlugt told 24 Hour News 8, “and then it just keeps going.”

She further along in her ALS journey.

From an electric wheelchair, she recalled how mysterious symptoms surfaced during her routine walks of the neighborhood 12 years ago.

They’ve only worsened since. Even her voice isn’t as strong as it used to be.

“You’re basically getting frozen in your body. I mean, everything’s dying. You can feel everything, but all your motor nerves are going to start dying. It’s bizarre,” Vanderlugt explained.

ALS is tricky to pinpoint. There’s no test to confirm the disease. Since it shows up differently in each person and moves at its own pace, doctors usually spend over a year ruling out possibilities before reaching a diagnosis.

It took Vanderlugt nine frustrating years before doctors diagnosed her.

“I went all over the country not just local. I’ve gone everywhere. I spent a week at the Mayo Clinic,” she explained.

Vanderlugt got answers in 2016, but there were new problems for her friend.

“My pointer finger started to freeze up,” Schuen said.“Someone said ‘oh it looks like you might have trigger finger. It’s a really easy surgery.’ I thought maybe it’s a tendon issue.” 

It was much more serious.

Her dominant right hand kept getting weaker and before the end of 2017, doctors told her she had Limb Onset ALS.

“It felt like my life stopped,” Schuen said.

She recently left her job as a teacher in Kentwood.

Schuen explained that it’s unclear where or when muscle weakness may appear next.

Vanderlugt said she struggled to wrap her head around Schuen’s diagnosis because there was also another woman from Torrington Road living with ALS.

ALS in Michigan

Dr. Paul Twydell is the director of Spectrum Health’s Neuromuscular Medicine unit, and he’s well aware of the ups and downs of ALS.

Twydell said some of the more severe forms of ALS cost the average insured patient about $200,000 per year.

There’s no cure. There are two main treatments to slow the disorder’s progress, but research shows they usually don’t work.

“This is a horrible disease. It’s almost certain death within an average time of three to five years. So, there is a clock that is ticking as soon as you get that diagnosis,” Twydell said.

Only about 15% of ALS cases are genetic, but tracking how it spreads remains a mystery.

Twydell is among the medical professionals worldwide that are trying to understand why some areas see more cases of this degenerative disorder.

Twydell pointed out that the Wikipedia page for Cadillac, MI has a section dedicated to a study about Lou Gehrig’s Disease cases in the area.

In West Michigan, Twydell said that areas near Newaygo County, as well as Lincoln Lake in the Greenville area, are being researched.

“Those are rumored hotspots, but we don’t really have any proof,” he said.

However, researchers at the University of Michigan say there is proof.

Dr. Eva Feldman, director of the ALS Center of Excellence at Michigan Medicine, spoke in Grand Rapids this month.

Feldman said that considering population size, Michigan and Ohio have more ALS patients than any other state.

“It’s growing. There are so many people in Michigan with ALS, why?” Vanderlugt asked.

Twydell said researchers are zeroing in on possibilities.

Working theories range from industrial toxins and farmland pesticides to simply blaming genetics for causing the “rumored hotspots.”

“Maybe it’s common in large families, and those large families don’t really leave the area,” Twydell said.

He said ALS researchers need more mapping data of ALS cases broken down by county, which could help narrow down a possible answer.

However, there’s limited access to updated ALS data by location. Even the national registry is voluntary.

“We rely a lot of times on the patients or their caregivers to enroll on the website. When you have this disease it’s the last thing you want to think about,” Twydell said.

Lack of awareness may also be stalling ALS progress.

“It’s a disease people have heard about, but I don’t think they actually know what it is and when you do know what it is, I think people are like ‘why isn’t more being done for this?’” Vanderlugt said.

“My husband and I are always thinking what could be the next great ice bucket challenge,” Schuen added.

For now, the longtime friends are taking things one day at a time.

They said their support comes from family, friends, and each other.

“To have her (Vanderlugt) on this journey with me is a huge difference because I was a wreck,” Schuen said.

“It sounds kind of trite to say it, but when you’re facing death – and it’s not maybe you’re going to die, it’s actually within the next couple years, I will be dead from this disease – so it actually changes your thinking on is what I believe real? Is heaven real? Is Christ real? Does all this have substantial backing behind this or logic? Is there good reasoning, and I’ve dug into all that and it’s been awesome,” Vanderlugt said emotionally.

“That’s the blessing that’s come from this, for sure,” she added.

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