Dad’s hands and feet: Family rallies around father with disease

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A woman pulls a cover off of a tractor engine.
Erica Benton shows off the engine of the John Deere tractor she’s been working on with her dad, Chip Benton, June 12, at their home, in Wellington, Ohio. (Sarah Donaldson photo)

WELLINGTON, Ohio — Erica and JD Benton never wanted to be mechanics.

They grew up in 4-H and FFA, showing horses, cows, goats, hogs, reptiles and amphibians and still projects. Erica, 21, is studying criminal justice in college. JD, 24, is studying photography. Despite all their work in 4-H and FFA, they never got their hands dirty on farm equipment. That’s their dad’s thing.

But in 2019, all that changed.

Chip Benton, their dad, is an agricultural mechanic and loves tinkering with tractors and other projects at his shop. He’s the backbone of the family, said his wife, Carrie Benton.

But last summer, Chip was diagnosed with frontotemporal dementia and motor neuron disease, or FTD-MND. The most common motor neuron disease is ALS, or Lou Gehrig’s Disease. Walking is difficult. He can’t pull the nozzle on a pressure washer. He can’t always hold a wrench. He’s no longer able to drive.

But even as his ability to do a mechanic’s work fades, his love for it doesn’t.

So, over the past year, Erica and JD have become his hands and feet. They pressure wash tractors and balers. They screw in nuts and bolts with wrenches. They take equipment apart and put it back together, better than before.

“I know there’s things I gotta do that I can’t do anymore … that’s why I rely on them,” Chip said.

Diagnosis

The first symptom Chip noticed was shoulder pain, in fall of 2018. He went to the doctor, expecting the issue was with his rotator cuff. He had already had surgery on his other shoulder years before. But this time, his doctor suspected there was a bigger problem.

Thus began the trips from doctor to doctor and the series of tests after tests. Between the appointments and tests, Chip started to notice other symptoms. He finally got his diagnosis in summer 2019.

When most people hear the word “dementia,” they think of older patients. Chip is only 52. FTD is the most common dementia for people under 60, and, Carrie said, the most underdiagnosed.

After hearing Chip’s diagnosis, Carrie, a registered nurse, looked back through some of her school books. She found a note in the margin next to a section about FTD: “only know for test — will probably never see.”

There is no cure. FTD-MND is one of those conditions where doctors tell you to “go home and enjoy what you can,” Carrie said.

But the Bentons are hoping to get Chip into a clinical trial for a treatment that could help slow the progression of the disease.

“You don’t want that ‘what if,’” Carrie said.

On June 12, on the porch behind their house, Chip sits in a chair. His walker stands nearby. He can still walk with some assistance, but it’s hard to predict what comes next.

“Not knowing what the next day brings … it’s rough,” Chip said.

Pulling tractor

Amid the chaos of his diagnosis, there was one thing he wanted to make sure got done.

Chip served many years on the Lorain County Fair Board, helping with the tractor and truck pulls. For several years, he had been working on turning a Massey Ferguson tractor into a pulling tractor.

“Chip said, ‘you know what I want? … We need to get the Massey done, just so I can go down the track one time,’” Carrie said. “Even though there’s all this chaos and everything wrong right now, he needs to get this done, and who am I to tell him no?”

Chip loves working outside, but by that point, some of the physical work was too difficult.

“Once we found everything out … it just felt like someone took and cut my legs right out from underneath me,” Chip said.

So, he turned to his children.

Growing up, Erica said, “Dad never let us out in the shop … I think he just didn’t want us to get hurt.”

As Erica and JD got older, they still thought of the shop as Chip’s place.

Now, they’re finally allowed in.

With Chip’s guidance, Erica and JD finished the tractor last year. Chip took it to a pull in September.

A man and a woman pressure wash part of a tractor.
Erica and JD Benton work on a John Deere tractor for their dad, Chip Benton, at their home in Wellington, Ohio, earlier in June. (Submitted photo)

Last tractor

Chip has been the go-to guy for many farmers in the area on equipment repairs. That didn’t stop when he was diagnosed. Erica and JD have become the brawn to his brains on that work, too.

Chip comes out to the shop with them to tell them what to do. His voice is weaker than it once was, and sometimes, it’s hard for him to find the right words. But they listen patiently to learn as much as they can.

Right now, they’re working on an engine overhaul for a John Deere tractor. The tractor belongs to Chip’s friend, Wayne Jordan. Jordan is also into ag mechanics, and he and Chip have traded work over the years.

Last summer, Jordan took Chip to HGR Industrial Surplus, in Euclid, Ohio. HGR includes more than 500,000 square feet of machinery and industrial equipment.

“At that point, he would rather fall 50 times than admit he needed something,” Carrie said. “Wayne didn’t give him a choice.”

Jordan convinced Chip to use a scooter on the trip.

“I ran the battery out of a little cart going through the aisles and looking around,” Chip said.

When Chip agreed to work on Jordan’s tractor, he knew it would be the last one. It seemed right to end on a close friend’s tractor.

“[Chip] said, ‘yeah, this will probably be my last one,’” Carrie said. “[Erica] said, ‘I kind of want it to go slow.’”

No surrender

Dealing with the disease hasn’t been easy. But with support from their community, they’re staying strong.

“No white flags — you don’t surrender,” Chip said.

Even now, Erica is looking for ways to make Chip’s pulling tractor handicap-accessible for this season.

“That way, he could pull a little bit extra, because that’s what he really enjoys,” Erica said.

A family friend, Wendy Shivak, owned a bakery in the area and held a fundraiser in 2019 through her bakery to support the Benton family.

Shivak lost her mother to ALS in late 2019. There was a period of time, before Shivak’s mother passed away, when both she and Carrie Benton were taking care of loved ones struggling with motor neuron diseases.

“Those times, as difficult as they were — I look back and smile,” Carrie said. “When you’re at rock bottom, you find out real quick who’s going to lift you up.”

Late June 12, Carrie got a text letting her know that two other family friends, both farmers in the Lorain County area, were putting on a benefit barbecue for Chip in July.

“We had no clue that was happening,” Carrie said. “Our heart is pretty full.”

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