By Steve Liewer at the Omaha World-Herald, October 14, 2013 •
Sgt. Chuck Kubich fixed jet engines and flew aboard the around-the-clock Looking Glass flights from Offutt Air Force Base in the early 1960s.
Tech. Sgt. David Masters kept communications systems running for the 55th Wing at Offutt and deployed to Kuwait during a 12-year Air Force career that ended in 2006.
Kubich, now 74, and Masters, 38, had different military careers more than four decades apart.
But today they are linked by a dreaded disease that slowly saps their physical strength. Increasingly, the disease makes them immobile. Almost certainly, it will kill them.
Amyotrophic lateral sclerosis, known as ALS or Lou Gehrig’s disease, is hardly limited to those who have served in the military. But researchers have found that military veterans stand twice the chance of contracting ALS as those who never served.
No one knows why.
But the apparent link is being taken seriously. Since 2008 the Department of Veterans Affairs has treated ALS as a service-related ailment. Research is underway. And families are concerned.
“It upsets me, if it was caused by the Air Force,” said Karen Andrews, 49, of Papillion, who is Kubich’s daughter and now his full-time caregiver. “They’re trying to make it right with compensation, but that doesn’t give me my father back.”
ALS is incurable, and there’s no effective long-term treatment. It is always fatal, usually within two to five years — though about 10 percent live more than 10 years.
Physicians first identified ALS in 1869, and the public first took notice when New York Yankees all-star slugger Lou Gehrig died of it in 1941. Other prominent victims include Chinese Communist leader Mao Zedong, Russian composer Dmitri Shostakovich, actor David Niven and musician Lead Belly.
In the United States, about 5,600 people contract the disease each year. The number of military veterans with ALS is much smaller; currently the regional chapter of the ALS Association is working with 16 Nebraska veterans, including Kubich and Masters.
Harvard University medical researchers first linked ALS to military service in 2005. So far, however, scientists can only guess at why it strikes veterans more than others.
Could it be a chemical agent of some kind? Something in the air, such as smoke from the raging oil well fires set by retreating Iraqi forces after the Persian Gulf War of 1990-91? A reaction to the battery of shots given to troops before heading overseas? A side effect of concussions?
“It’s not clear why the military is twofold at risk,” said Dr. Lucie Bruijn, director of research at the ALS Association in Washington, D.C. “The studies are still in progress. There’s nothing striking at this point.”
Bruijn said ALS is related to other incurable neurological diseases, such as Parkinson’s and Alzheimer’s.
She said up to 10 percent of ALS cases seem to run in families, while the rest appear to occur randomly. Both types seem to be connected to mutations in certain genes that are switched on by still-unknown environmental factors.
“The gene-environment interface is something we’re looking at very closely,” Bruijn said.
ALS once was an “orphan” disease starved of research funds, Bruijn said. That’s no longer the case.
“We have so many clues, so many technologies,” she said. “The more we discover, the more we need.”
Sad as the military link is, it has brought a burst of interest, and money, into ALS treatment and research. In 2007 Congress created a research program within the Defense Department, with up to $8 million in annual funding in most years, thanks to lobbying by the ALS Association. The group annually takes veterans with ALS and their families to Washington to talk to members of Congress.
The Defense Department money is focused on preparing promising therapies for testing.
“We’re trying to prime the pump and fund (researchers) before they go into clinical trials,” said Melissa Forsythe, director of the Pentagon’s ALS Research Program. “Our goal every year is to make the very best investment we can.”
In one project, she said, researchers are studying whether the erectile-dysfunction drug vardenafil (known commercially as Levitra) might help to slow ALS symptoms. In another, a researcher is testing a gene therapy that might help stop the mutation that triggers ALS.
Bruijn said scientists currently believe that what we call ALS may actually be several similar diseases that attack different groups of motor neurons. That would account for differences in how the disease progresses. Gehrig, for example, died within two years of his diagnosis; theoretical physicist Stephen Hawking has survived with ALS for 50 years.
Kubich and Masters represent two different paths.
Kubich showed no signs of ill health during or after his Air Force tour. He started a business, Chuck’s Carpet Service, in Bellevue that he ran until his retirement four years ago. He taught a class at Metropolitan Community College, was active in a Masonic lodge and volunteered building houses with Habitat for Humanity.
Doctors diagnosed Kubich with ALS in March 2012 after ruling out other physical and neurological causes.
Andrews, though, saw problems as early as 2010, when her dad, an avid hunter, couldn’t lift his rifle to his shoulder. Seeing him without a shirt, she saw that his powerful upper torso had shriveled.
“I was shocked,” she recalled. “He’s the strongest 70-year-old I’ve ever known.”
His illness has transformed the family. Kubich, whose wife died in 2008, sold his house and moved in with Andrews and her husband, Steve, an Air Force retiree who now works at Offutt.
Karen Andrews quit her job at a credit union and shares live-in caretaking duties with her sister, Sherry Kubich. Thanks to a stipend from the VA, they can draw a small amount of pay for providing care.
Since moving in, Chuck Kubich has lost all use of his arms and hands, and he is losing his ability to walk. A machine that pumps oxygen through a mask makes his breathing easier. A feeding tube gives nourishment directly to his stomach; it has become too dangerous to feed him solid food, because he might choke.
The breathing machine is a loaner from ALS in the Heartland, an Omaha organization that was started seven years ago by ALS families. The organization helps with equipment and respite services for caregivers. For about a month, hospice aides have been coming in to help, too.
“It’s a very cruel disease. His mind is still sharp, he knows what’s going on,” Andrews said. “He’s gone from being active 24/7 to being totally dependent on us.”
Andrews knows something about fighting a disease: She is a five-year breast-cancer survivor. As if that weren’t enough to cope with, her 25-year-old son, Army Spc. Dustin Goan, suffered a back injury from a roadside bomb explosion while serving in Afghanistan in the spring. He has mostly recovered, and came home two weeks ago for a visit.
Andrews continues to worry about the still-murky link between the military and ALS and what it means for her husband and her son.
The last thing she wants is to endure this again.
“I’m proud of the fact that my father served, and that my husband and son served, too,” she said. “I hope they find out what it is so other families don’t have to deal with the heartache we’re going through.”
For Masters, the ALS journey has been slower than for Kubich, and less bleak — a blessing for the talkative family man with three children. Nine years after his first symptoms, he has lost the use of the fingers on his right hand and most of the use of his left. His step has slowed a bit lately, but he can still handle the stairs of his Bellevue split-level without much trouble.
“We’re really very lucky,” he said.
Masters enlisted in 1994 to see the world beyond his whistle-stop hometown of Ohatchee, Ala. He wanted to join the military police, but the Air Force taught him how to maintain telephone systems instead.
An exercise buff, Masters entered bodybuilding competitions on the side.
“I was the face of physical fitness for my squadron,” he said.
But in 2004, while deployed to Kuwait, he developed a weakness in his shoulders. He struggled to lift weights. He rested a bit, thinking it was a pinched nerve. Things only got worse.
Back home from his deployment, Masters grew more concerned when his pinky finger twitched wildly while he held a salute during the national anthem at an Offutt ceremony. It took nearly two years before doctors finally diagnosed his trouble.
As much as he hated it, Masters knew he had no choice but to retire.
“The Air Force agreed it was a terminal thing — for my career and, possibly, my life,” Masters said.
His slow slide since then has given Masters and his wife, Jodi, time to adjust. He has developed ways to cope with his limited hand dexterity. He uses voice technology to send texts and emails on his cellphone.
“We’re not gonna quit,” Masters said. “We’re not gonna feel sorry for ourselves.”
David and Jodi Masters both speak publicly on behalf of the ALS Association. And their story is featured on the group’s national website.
ALS is just part of family life for their three children, Cody, Sabrina and Radley, who have hardly known a time when their dad had full use of his hands.
“I’ve lost my career, but I’ve still got my family and my life,” Masters said. “I’ve never been a crier or a whiner or a quitter. Yes, it sucks. But I’m not going to roll over and die.”
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