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Benefit planned for Hebron native fighting lupus

Published: Friday, June 21, 2013 5:30 a.m. CDT • Updated: Friday, June 21, 2013 10:33 a.m. CDT
(Lathan Goumas - lgoumas@shawmedia.com)
Luke Moore talks about living with lupus Wednesday at his parents' home in Hebron. Moore began experiencing painful blood clots in his legs in 2006 which eventually lead to doctors diagnosing him with lupus in late 2009. Moore has undergone an experimental oxygen treatments to help with his disease.

HEBRON – This time, Luke Moore knew right away what was happening. Another stroke.

Moore, 29, was in his home in Johnsburg in early March, snow piled up outside from a nasty late-winter storm, and suddenly he couldn’t swallow. He’d had a couple of strokes before – one more major than the other – without realizing at first what was going on.

You never really know what’s coming next with lupus, but for Moore, who was officially diagnosed with the autoimmune disease in 2009, having had and ignored strokes in the past meant he was now prepared, at least, to identify them.

When he couldn’t swallow, he immediately dialed his dad, who didn’t answer.

Luke tried to leave a message, but nothing came out.

• • •

The pain started in college.

Back from the University of Illinois, Moore would spend his summers working for the conservation district, mowing and trimming the parks, clearing paths.

He’d come home so sore that he’d have to crawl up the stairs to his room, but he never let his parents know how badly his legs ached.

“Luke’s got a high threshold for pain,” said Dave Moore, Luke’s dad. “We just for the most part thought he was tired.”

A couple years later, after Moore graduated and took a desk job with his uncle’s Arlington Heights-based refrigeration company, blood clots formed in his legs.

Two years, two lung biopsies and several rounds of steroids later, a kidney biopsy finally revealed that Moore has lupus, an incurable disease that affects more than a million Americans, according to the Lupus Foundation of America.

While the condition is treatable, it affects people in different ways and in varying degrees. Moore has had his share of complications.

“Even after you get the diagnosis, you don’t know all the repercussions,” Dave Moore said. “Like the first stroke – the first stroke was a complete shocker.”

• • •

If the second major stroke was the one that took Luke Moore’s mouth – rendering him unable to swallow or speak – the first was the one that took his mind.

He stayed home for four days with a headache before he went to the doctor. It was around Father’s Day 2010, and Moore’s family had held out that Luke would make it to the festivities.

Instead, he found himself in the hospital. After tests, doctors said Moore actually had a minor stroke a few months prior. This one, they said, was more major.

“I made a lot of improvement [since then], but I’m definitely not as quick mentally as before,” Moore said. “It’s memory and reaction time and thinking.”

He says the words slowly, staring at the ground like they’re stained on the carpet.

• • •

Moore penned a shaky letter to his roommate that cold March morning: “I need to go to the hospital,” he remembered it saying.

By the next morning, Moore had again learned how to swallow – a basic function that comes back quickly.

Learning to speak is a whole other ball game.

Moore had to start with the sounds – vowels first, then consonants, then syllables, then words.

Then, sentences.

“I can think fine. My language and tongue and coordination of the mechanisms in the output phase don’t work,” said Moore, tripping over a couple of the tougher words and leaning back in a chair at his parents’ place in Hebron, where he’s staying for the time being.

“I don’t even look at you because that wastes mental capacity,” he continued, staring forward at the ground. “It takes work to observe you in here, so I just focus on the word and the thought and slowly get it out.”

• • •

Moore’s speech is continuing to improve through speech therapy sessions, occupational therapy and his own practice, but the stroke gave his parents a scare.

“We were pretty freaked out at first,” said Margie Moore, Luke’s mom. “Even though he had one before, this thing about not speaking was pretty horrible.”

Dave Moore dove into research after the latest stroke and learned about oxygen therapy. Like a diver recovering from the bends, three days a week Moore underwent treatment in a hyperbaric chamber at a clinic in Madison, Wis.

“It’s huge,” Lucas Moore said of the treatment. “It’s more effective than the pills I take everyday for the lupus.”

But insurance doesn’t cover the oxygen treatments, and the number of speech therapy sessions covered by his insurance recently ran out.

So, he’s taking a break while the family figures out its next step.

In the meantime, Lucas’ sister, Deidre Moore, and a couple friends have organized a benefit to raise money for continued treatment.

“It’s really nice for Luke that everybody rallies around,” Margie Moore said. “You feel kind of alone. It’s nice to know people want to help you.”

If you go What: Dinner, raffle and silent auction to benefit Luke Moore Where: Crandall's Restaurant, 10441 Route 47, Hebron When: 5 to 9 p.m. July 15 Tickets: $15 at the door or purchased ahead of time at The Dari Co, 10011 Main St., Hebron How to help: To make a donation, visit www.giveforward.com/fundraiser/hjc2/benefitforlukemoore

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