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Transcending ALS

FD man counsels others, stays active

Jim O'Brien, of Fort Dodge, won several medals, including three golds, in a national level athletics competition in July in New Orleans.

Always an active person, O'Brien served in the military and worked in the Webster County Sheriff's Office for more than a decade, while enjoying racquetball and frequently bicycling 20-plus miles.

The gold medals were awarded in bowling, trap shooting and bocce ball. They came at the 43rd annual National Veterans Wheelchair Games. The wheelchair is a new implement for O'Brien as a result of being diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig's disease, in early 2022.

"My life up to that point was pretty action-packed, with a lot of physical activity," he said.

O'Brien readily acknowledges his lifespan is now shortened, although he's not sure by how much. The average length of time for people to live after getting ALS is two and a half to five years, although a few may reach 10 years. He's already reached the short side of that equation.

"The journey with ALS, you are going to go down the same path as everyone else, but you go down in your own unique way," O'Brien said.

But he refuses to wallow in self-misery, and instead is heavily involved with mentoring other people across the U.S. who also have the fatal ALS diagnosis.

O'Brien, 64, described in an unvarnished way how he feels about the ways ALS has impacted him and how he aims to live as fully as possible.

"I can try to grow as a person, not to actually live with the disease, but to eventually transcend this disease, to completely accept it, to learn from it, and continue to grow," he said.

Told by a reporter that approach might be hard for many people, O'Brien acknowledged he has tough times, but added the key thing is that "I can choose which emotional waves to surf and which ones not to surf."

Dawn Larson, a Fort Dodge friend of O'Brien, said she is impressed by how he boosts other veterans.

"He is approaching his diagnosis with incredible grace," Larson said. "He inspires me."

O'Brien, the son of Jim and Phyllis O'Brien, grew up in a family of four kids in the 1400 block of Fourth Avenue South.

He graduated in the Fort Dodge Senior High School Class of 1978 and went into the Air Force after graduation, having been intrigued by the military at a young age seeing Vietnam War news broadcast daily to homes.

He served four years active duty stateside, then four years in the Reserves before returning home to work construction jobs and at the quarry for United States Gypsum. O'Brien got a criminology degree from Iowa Central Community College, then worked for the Sheriff's Office through 2010, retiring due to a foot injury.

The ALS diagnosis came in April 2022.

"I cried, but I thought, I've been blessed with time to figure out what my next move would be," he said. "I felt turned inside out, but I felt everything would be OK."

He noted that ALS is a very deceptive disease, much like heart disease. At the beginning, from the outside, a person may look like they are doing well. But inside, an insidious neurodegenerative disease is lurking and motor neurons in the brain and spinal cord slowly wither and die.

That results in an inability to control muscles, so that eventually a person with ALS loses the ability to speak, eat, move and breathe.

"I am experiencing muscle weakness in my hands, feet, arms, legs, neck, throat, back, shoul ders and diaphragm," O'Brien said. "The weakening of these muscles has resulted in a loss of balance, the inability to walk or stand for any length of time, difficulty breathing, chewing and swallowing."

He transitioned to a wheelchair one year ago, which he now uses 80 percent of the time. At the same time, he delved deeper into volunteerism, and has embraced supporting the Paralyzed Veterans of America organization.

A key piece for O'Brien is serving as a peer mentor for the ALS Association for others with what is often called Lou Gehrig's disease, named for the New York Yankees slugger who succumbed to it in 1941. He has spoken with dozens and dozens of people with ALS, at times with Zoom teleconferencing.

"I am on the phone every day, at least two people every day," O'Brien said.

One connection he remembers vividly was with a vet from a remote part of Texas who had scant resources.

"The guy told me he didn't know what he'd do without me," O'Brien said. "That was powerful to me when I knew I had the same disease. From a spiritual aspect, what it has meant to me, we are both instruments of a greater good."

More service came earlier this year when O'Brien went to Washington, D.C., among hundreds of Paralyzed Veterans of America members on a lobbying trip. As a person using a wheelchair, his eyes are open to the need to have more places accessible to all, in line with the Americans With Disabilities Act.

"It was a sea of people in all kinds of mobility devices," he said. "It took my breath away. Talk about transcendence."

Now he receives home care from UnityPoint At Home about once a week. O'Brien is determined to keep an active social life, going to sports, meals out, and more. He has noticed people in some ways clam up when seeing him, and he suspects they are unsure what to say.

His advice: "Hey, be yourself."

More than that, O'Brien also welcomes anyone who wants to chat to reach him at animals.pva@yahoo.com or at (515) 408-1650.

"If anyone, veteran or civilian, is interested in adaptive sports, or if they just want to know more about ALS, they are welcome to contact me," he said.