O’Neill, Bloomfield residents share stories of ALS diagnosis

September 23, 2018

Slurred speech gave Gary Stauffer his first cause for alarm.

When tests ruled out a mild stroke, the University of Nebraska-Lincoln Extension educator from O’Neill — who was used to giving talks to farmers and ranchers about how to be profitable in the agricultural industry and working with 4-H youths — sought answers from neurologists in Norfolk and Omaha.

The diagnosis he eventually received was devastating: Amyotrophic Lateral Sclerosis, also known as ALS or Lou Gehrig’s disease.

“That was not what I wanted to hear,” Stauffer said in an email. “I had had two friends die from ALS and knew what a devastating disease it was.”

Stauffer is one of two Northeast Nebraskans sharing the story of their ALS diagnosis in advance of the Norfolk & Columbus Area Walk to Raise Support for Lou Gehrig’s Disease. The walk is set to begin at 1 p.m. Sunday, Sept. 23, at Skyview Lake in Norfolk.

The event is designed to help spread awareness of the disease and raise support for people whose lives have been changed forever by ALS.

With ALS, individuals maintain their minds but progressively lose control of all muscle movement, including the ability to swallow, speak and breathe.

With personalities and memories still intact but all physical functions robbed from them in succession, patients literally become trapped in their own bodies. Life expectancy does not exceed five years, according to ALS in the Heartland.

ALS in the Heartland — a nonprofit agency that helps ALS patients and their loved ones have the highest possible quality of life — serves several families in the Norfolk area. Since it is not affiliated with a national association, all proceeds go to help patients in Nebraska and western Iowa.

Since his diagnosis in 2016, Stauffer has lost the ability to talk, swallow, eat and drink. He received a feeding tube in December 2017. He’s now losing function of his limbs, mostly on his left side.

“I have a bum left arm and half bum left leg. My left toes drop, and I can stub my toe on the carpet easily. That hurts,” he said.

Stauffer communicates with the help of a “Boogie Board” from ALS in the Heartland and an iPad with text-to-speech application.

Carla Shearon — who also is sharing her ALS diagnosis story — now communicates using only her eyes and a special device. The Bloomfield resident received her diagnosis a decade ago after she began experiencing weakness, balance issues and weight loss.

“I was told that I had three to five years to live. So I focused on end-of-life decisions,” Shearon wrote, using her special communication device. “Little did I know that God had other plans. I still had many more years to live.”

Shearon said she feels blessed and grateful to have the support of loving family and friends to help her through the difficult time. She also is grateful for organizations like ALS in the Heartland, which has patient advocates with training in social services, electronics, communication devices and assistive medical equipment.

“For me, personally, they have even purchased items for my individual needs for comfort or to give me greater quality of life. Something as simple as a TV remote with extra large buttons may not seem like a big deal, but for me it meant the return of a level of independence that I had lost,” Shearon said.

The walk is a child-friendly and pet-friendly event featuring refreshments, games, a silent auction and a ceremonial walk lap.

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Want to learn more?

For more information or to register, visit alsintheheartland.org.

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