Home Breaking News Guests at ALS dinner hear story of disease’s effects

Guests at ALS dinner hear story of disease’s effects

News-Leader photo/JOHN R. SCHIRMER SPECIAL STORY. Barry Wright tells about the struggle with ALS Saturday night during a dinner in his honor at Off the Beaten Track. The event raised more than $30,000 for the state ALS organization.

By John R. Schirmer

News-Leader staff

Barry Wright shared a story Saturday night, the story of a friend.

Wright – a Nashville businessman, community leader, musician, church leader – spoke at “Strutting for ALS,” a fund-raiser for the battle against amyotrophic lateral sclerosis, ALS or Lou Gehrig’s Disease.

The dinner was held at Off the Beaten Track and drew a crowd of about 250, according to organizer Gail Hearnsberger.

“I’m going to tell you about a friend who had ALS,” Wright said. “If anyone had told him that at age 55, he would be confined to a wheelchair, he would have been surprised. He’s a non-smoker, non-drinker in perfect health. He had a job he loved and hoped he’d never have to retire.”

One day, the friend was on a bike ride when he became unable to breathe. “He threw the bike down and stood on the side of the highway to get his breath. He got back on the bicycle. Before he returned to his office, he had to stop several more times to catch his breath.

Later, Wright said, the friend noticed that he could hold coins. He had trouble picking up his keys. It was difficult to get a key into the lock. If he managed to get it in, he couldn’t turn the key.

“He said that his fingers just didn’t work like they used to. He couldn’t type on a keyboard. He developed muscle twitches which were noticeable to others,” Wright said.

The friend went for several months of medical tests. “Then he heard the dreaded words amyotrophic lateral sclerosis, ALS, Lou Gehrig’s Disease,” Wright said.

The man developed pneumonia and had a collapsed lung. Walking and talking became “extremely difficult,” Wright said.

So did feeding himself, brushing his teeth and taking care of personal hygiene. “He had to depend on someone else to perform these tasks for him,” Wright said.

One day, he was sitting in his favorite chair at home and leaned over too far. He 

couldn’t get up, couldn’t breathe. 

“His wife found him slumped over. He had no heartbeat. She called 9-11. When the ambulance arrived, personnel learned that he had signed a living will with a do not resuscitate order. My friend died in his own home sitting in his own chair,” Wright said.

A typical ALS patient has a 2 to 5-year life expectancy, Wright said, citing research. Only 10 percent make it to the 10-year mark. Most die from breathing difficulties.

But back to the story of the friend. “His wife had a heated discussion with the paramedics and told them she didn’t care what papers had been signed. She would unsign them. CPR was performed, and the man had a pulse and heartbeat. He was carried to the hospital and stabilized,” Wright said.

Thirty hours later, “He opened his eyes and was alert again with no recollection of what had happened,” Wright said. 

Eventually, he was able to return home “in a much weaker state. He was wheelchair bound and needed around the clock assistance and full-time care,” according to Wright.

If you haven’t figured it out by now, “The person in that story was actually me nearly three years ago,” Wright said.

Wright has passed the five year benchmark since he was diagnosed with ALS. “I plan to make it another five years,” he said.

“There’s never been a day that I didn’t have peace and joy through this,” he said. “Thirty-seven years ago, some of my family and friends were there when God gave me a wife [Shirley] and helpmeet who was with me through all of this. She’s helped from daylight to dark. Thank you, Shirley. God gave me a beautiful daughter who brings me joy every day. Thank you, Jennifer.”

After his “near-death or death to life experience,” Wright said other situations have arisen which caused him to think, “This is the end. Somehow, miraculously, someone showed up at the door and took care of that issue.”

More than two years ago, “My angel of mercy sent from God showed up, my daytime care-giver. He’s my arms, legs, hands, feet, often my voice and allowed Shirley to continue her career. Daniel Organista is still a vital part of me,” Wright said to a standing ovation for Organista.

“The joy I have comes from my faith in Jesus Christ who came to earth, paid the ultimate sacrifice so that I could have eternal live. He gives me joy and peace,” Wright said.

“I want to quote a friend, an ALS patient, who told me, ‘The doctors gave me 2-5 years, but God gave me eternity.’ That’s where my joy comes from,” Wright said.

After Wright’s presentation, celebrity waiters served the meal while guests listened to music from Scotty Floyd and his sister Dena Tollett. They placed bids on silent auction items as well. They also heard from the executive director of the Arkansas ALS Association, Jennifer Necessary.

Necessary thanked Hearnsberger for her role in organizing and holding the dinner. “Gail, you are amazing. Thank you.”

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