ROGERS - “Lou Gehrig believed he could beat ALS, and so do I,” said Michael Minnich.
Minnich has amyotrophic lateral sclerosis (ALS), more commonly known as Lou Gehrig’s disease. It essentially shuts the body down by attacking muscle groups, one region of the body at a time. Life expectancy is typically linked to the disease’s proximity to the lung region, where it eventually shuts down the respiratory system.
“It’s like getting hit by abus in slow motion,” Minnich said. “You can’t breathe or cough. It’s a horrible way to go.”
Minnich has a rare form of the disease that is genetic and more aggressive than typical ALS. His sister died from it after nine years, and he is trying to raise awareness in hopes that a treatment or cure can be found in time for his children, who are at high risk for the disease.
This responsibility takes him to events around the state, and he takes it as seriously as a full-time job.
“Mike is an advocate,” said Carole Boyd-Haws,director of patient care services at the ALS Association of Arkansas. “He’s a teacher … he gets to the heart of the matter.”
Minnich’s next speaking engagement is the Walk to Defeat ALS, a benefit for the ALS Association of Arkansas, which provides patient care services, advocacy and educational resources to 100 ALS patients in Arkansas and has a staff of two.
Becoming the face of ALS in Arkansas is a big undertaking, but it’s one that has helped Minnich’sfamily come to terms with his illness, he said.
“At one of the ALS corporate breakfasts, our kids asked questions,” which was unusual, said Minnich’s wife, April. “They don’t want to know [about ALS], they want to be normal.”
At these events, Minnich explains what he’s going through, and if he can make the audience understand, he said there’s rarely a dry eye in the house.
Raising funds for research is particularly challenging because, Minnich said, people don’t know what ALS is or that it has no treatment.
“Lou Gehrig died 72 years ago, and [doctors] don’t know any more about it than they knew then,” Minnich said.
When diagnosed with ALS, the person slowly loses mobility and speech and must rely on others for care. Dignity quickly goes out the window.
“Every single thing that you are is gone,” Minnich said. “Except for the fact that you know everything. Themind is not affected at all.”
Minnich spent 16 years at Superior Industries International, where he repaired equipment and managed 60 employees in the maintenance performance department. Now he can’t open a bottle of water.
“I was the guy a friend could call when his daughter’s car was leaking oil from the motor,” Minnich said. “I’d go over and say, ‘Let’s tear the motor apart.’
“I did everything myself. I didn’t have to ask for help. If I wanted to do it, I’d do it.”
Two other Superior employees had a family member with ALS, so they knew intimately what he was facing. They bought him a scooter, extending the amount of time he could remain at work by a few months.
The Arkansas organization makes sure that patients have medical equipment such as wheelchairs and breathing machines as well as emotional support, which Minnich said is very important.
For Minnich and many other ALS patients, remaining positive is a must.
“It’s weird because every person we’ve met [with ALS], they’re not ‘woe is me’ kind ofpeople,” Minnich said. “For the most part, they’re upbeat.
“My daughter’s a junior and my son plays football,they need to focus on that stuff … I ain’t got time for sad.” The one-mile Walk to De
feat ALS will be held at 11:30
a.m. Saturday at Lawrence
Plaza in Bentonville. For more
information, call (479) 621-
Northwest Profile, Pages 37 on 09/15/2013