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BENTONVILLE, Ark. (KNWA/FOX24) — A Bentonville man is dedicating his life to advocating for people with ALS, and trying to help diagnose the disease sooner.

"I'1000 a movie connoisseur," said Tommy Edward Culpepper, Jr. "I honey movies."

For Culpepper, movies accept always been his saving grace. Even when he was a child growing upwards in St. Louis, Missouri.

"I grew upwards in the Peabody Projects and the habitation environment wasn't the greatest," he said. "Star Wars, Blade Runner, Highlander. Movies similar that are excellent getaways for me."

Until he found himself in a nightmare that started in the doctors office.

"He closes the door, sits me down. Information technology was like a movie," he remembered. "He only goes correct into it. He tells me that I have a motor neuron disease."

He was diagnosed with ALS in February of 2019 at 48 years old. He said he was a very active person at that time, peculiarly enjoying walks and cycle rides on the trails around Bentonville.

"Information technology striking me similar a ton of bricks," he said. "I got the hey, you're healthy every bit a horse some weeks prior, so you lot know it injure. I felt like I was doing everything correct."

ALS is amyotrophic lateral sclerosi , also known equally Lou Gehrig's illness. It'south a fata neurodegenerative disease that affects nerve cells in the brain and spinal cord. Like many diagnosed with ALS, Culpepper had no prior history. Nevertheless, he started noticing signs of the disease several years earlier he was diagnosed.

"In roughly late 2016, early 2017, I started noticing some weird musculus twitches. Information technology didn't hurt or anything merely information technology was just random."

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He then started noticing muscle twitches in his left arm, his neck and his left leg. When he was standing at the stove and cooking dinner one dark, he said his leg locked up and he vicious, nearly hitting his caput on the kitchen island. That'southward when he and his wife decided to bring it to his primary doctor.

He said the hardest office is no longer being able to do the simple things.

"Being able to do that apparel yourself, groom yourself, bathe yourself and you lot know and tie a tie, tie a bow necktie and write, feed yourself to be able to walk without aid," he said. "I can no longer do whatever of that."

But Culpepper isn't going down without helping other people starting time. He's part of a study with an organisation called Everything ALS based.

Indu Navar said the group's goal is to harness the ability of applied science to help diagnose ALS sooner.

"Information technology takes virtually 18 months to ii years to get diagnosed," she said. "By the time they become diagnosed, that really is at the end of life, or they probably pass away earlier they're able to go a diagnosis."

They are studying the physiological biomarkers to run into if the encephalon is giving warning signs to the onset of ALS.

"How exercise you lot walk, how do you motion your hands, how do y'all speak?" she said. "How do you lot're facial movements change?"

"I am part of the vocalisation report," said Culpepper. "They're looking at our voices, trying to decide when it starts to modify because of ALS."

A grouping of bipartisan congressmembers is also working to brand certain the government is keeping its promises to work towards diagnosing, treating and curing ALS. They sent a letter to the Food and Drug Administration on July 15th.

President Joe Biden signed the "Accelerating Admission to Critical Therapies for ALS Act" in Dec of 2021. Information technology requires the government to accelerate the agreement of neurodegenerative diseases similar ALS. The FDA has to publish and implement a five year plan to foster drug development, and it has to award grants for research into how to foreclose, diagnose, mitigate, care for and cure ALS.

For Navar, this cause is shut to her heart. She lost her husband to ALS in 2019 and made a hope to him before he died.

"His suffering is non going to exist in vain. This suffering is not going to be a number in this affliction," she said. "His suffering will hateful nosotros will get handling for this illness."

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Culpepper has about a year and a one-half left in his five-twelvemonth prognosis, and he wants to brand the most of the time he has left.

"I'm blessed and I take the support of my wife, my family unit and my friends and that all keeps me going," he said. "Plus just advocating for others."

Culpepper works as an abet the ALS Wonderland Foundation based in Lilliputian Rock.

The non-turn a profit started after Lara Blume McGee lost her father to ALS. She said he was diagnosed in 2009, but affliction started to progress in 2012.

"My dad was an athlete, never sick, muscular, always at the gym, he would ride his bike from West Fiddling Rock to downtown to get to piece of work," she said. "I saw my dad's body changing. What's so sad nigh ALS is it does not affect your listen. Your mind is as sharp as information technology was before."

When her dad couldn't breathe one day, he decided to get a tracheotomy, which intensified the care he required. Until one day he decided he was done and wanted to take it out, which means he wouldn't survive. She said he died peacefully in 2015.

Now working in her father'southward honor, her foundation works to create awareness, support and funding for people with ALS in Arkansas.

"Financially, it takes a huge toll," she said. "There'southward caregivers, there'south medical equipment, in that location'due south medicine. You take to get to your appointment in Trivial Rock because there's only ane ALS clinic. And then all of that toll money."

They assistance pay for hotels, wheelchair vans and gas so patients can get to those appointments.

The ALS in Wonderland Foundation is hosting a benefit concert fundraiser on September 15th at the Northwest Arkansas Customs College. Click here to learn more about the upshot.

For the latest news, weather, sports, and streaming video, head to KNWA FOX24.

Source: https://www.newsbreak.com/news/2677418019917/bentonville-man-works-to-help-diagnose-als-sooner

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