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Local couple fought, changed health outcomes for dementia sufferers: 'Motivated by love, driven by anger'

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Larry Gnatzig spends part of his retirement at Resurrection Lutheran Church in New Berlin.

"This is my weekly duty, to get the bulletins done," Gnatzig said, folding blue pieces of paper at his desk ahead of Sunday's service.

Gnatzig is the church's administrator, and only paid employee, with a knack for giving the occasional sermon.

Away from the peaceful church, and its small, welcoming congregation, Gnatzig has dedicated another part of his retirement to a much larger, and at times, national audience.

"I have to do this. Something's wrong. Something's wrong," said Gnatzig.

He realized something was wrong with the healthcare system eight years ago after his partner, Jeff Tucker, was diagnosed with frontotemporal degeneration, a type of dementia.

According to the Association for Frontotemporal Degeneration (AFTD), the disease is marked by personality changes, apathy, and a progressive decline in socially appropriate behavior, judgment, self-control, and empathy.

Gnatzig said he first met Tucker over the internet (AOL) in 1996. They met in person, he said, after six months of correspondence.

"He got in the car, and I went, 'Oh my, this is the guy,'" said Gnatzig.

They moved in together in Milwaukee and got married. But life, Gnatzig said, changed forever in 2015.

"The first thing that I noticed was his lack of interest, I guess. He was just quiet. He would sit for hours and hours and not talk," said Gnatzig.

The change was alarming enough to visit a doctor, who eventually diagnosed frontotemporal degeneration.

"So, I had to tell him that he has this dementia. There's no treatment for it, and you will die from it," said Gnatzig.

The county, according to Gnatzig, initially denied Tucker disability services under Medicaid. He said the screening was poor — only testing for physical and not cognitive impairment — and he believes the case worker resented the couple for being gay.

"So, this is the aura. You can feel the aura in the room that this [case worker] did not want to be here," said Gnatzig.

After many phone calls to county and state officials, Gnatzig said he got a new screening and secured Tucker's disability.

But Gnatzig's fight did not end there. He would go on to help change policy at the state and federal levels to improve screenings for early-onset dementia.

"Love was my motivator, anger was my drive," said Gnatzig.

In D.C., alongside the Alzheimer's Association, he lobbied to successfully change the law so services typically reserved for people 60 and older would be available for those younger with early onset dementia.

Gnatzig also proudly recalls that he and Tucker's case in Milwaukee County led to a requirement that county workers take LGBTQ sensitivity training.

"If [Tucker] has taught me anything, he's taught me we just take things as they come," he Gnatzig.

Gnatzig said Tucker has already outlived his life expectancy of five to seven years after his initial diagnosis. He said every day they have left is worth the struggle for moments that may come when Tucker's personality triumphs over his disease.

"All he had was to put his hand on my shoulder. But everything he had was in that hand. And to this day, I don't know if I'm ever going to get that again. But all I do is just wait because he could come back," said Gnatzig.


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