20-02-2025
‘Forgetting to Remember': Norwalk family shares Alzheimer's experience
NORWALK, Iowa — An Alzheimer's diagnosis is heartbreaking, and one central Iowa family has had to hear it more than once.
Luke McLaughlin still remembers growing up in Norwalk, even being crowned the homecoming king in high school.
'It's usually the football players, right? The stud football players and somehow I got it,' McLaughlin said.
His short-term memory is harder to come by because this 49-year-old is living with early-onset Alzheimer's disease.
'It feels better to get the diagnosis because then you kind of understand what's been going on and you understand why things are going the way they're going,' Tom McLaughlin, Luke's dad, said, 'but then you gotta live through it.'
Luke's family has lived through this disease before. The illness took away his mother, and is currently impacting his sister.
'You remember and see a person when they're at their best and you see them at the end of Alzheimer's and it's not easy, it's a challenge,' Shannon McLaughlin, Luke's brother, said. 'That's what I thought about with him. I don't want to see him go through the same stuff.'
'I just feel horrible for just the pain and trauma that's wreaking havoc on our family,' Luke said. 'I can't get that out of my mind.'
It's consuming for many families. Research shows nearly seven million Americans are living with Alzheimer's disease, but only 5% experience early-onset or 'younger Alzheimer's.' That's when the disease develops in your forties or fifties.
Genetic testing gave Luke that diagnosis when he was 45 years old. Over the past year, social media gave him the platform to share his story with others.
He posts short videos with help from his friend Shannon Johnson, his high school sweetheart who he reconnected with last year.
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'We just started recording our phone calls and our time together, and it's really just kind of evolved naturally on its own,' Johnson said. 'But something that's really important to him is just wanting to show people how he's choosing to live his life.'
While some clips show the fun-loving dad dancing in the kitchen, others give a raw look into the realities of the disease.
A documentary titled 'Forgetting to Remember' hopes to capture that as well.
'It's not about me,' Luke said. 'It's about the disease. It's about research. It's about funding. I'm just a character in this whole documentary.'
A documentary that's started, but not yet complete.
'Clearly we're on a little bit of a ticking time bomb here,' Brent Roberts, director with The New Road Productions, said, 'where I want to be sitting next to Luke in theater to watch this. So, the sooner we can make this happen the better. And the only way we will have the time is if we have money.'
As the project gets closer to the fundraising goal, Luke's condition continues to decline.
'Early-onset Alzheimer's, people might think that it goes in a diagonal line down and people just get worse and worse and don't have the same faculties,' Luke's dad Tom explained. 'But it actually goes stair step. So, something will happen, and they'll stay in the same light for a while and you'll think 'gee this is great, they're doing well and they're getting along well.' And then all of a sudden there'll be a big drop.'
It's those moments that Luke wants to show.
'It'll create a memory, right?' Luke said. 'For my entire family and especially my young daughters. They'll see a whole new side of me.'
A time capsule of what Luke's life is like right now.
'He's so colorful and just alive,' Johnson said, 'and I want people to see him enjoying his life even though he's staring down this terrible illness.'
To provide hope for what's to come next.
'I'm here for a good time not a long time,' Luke said, 'and that's how I live.'
If you'd like to follow Luke's story, click here.
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