During a four-year period from 2003 to 2007, over 2,100 veterans with ALS were identified with amyotrophic lateral sclerosis (ALS), a progressive neurodegenerative disease. A 2008 report issued by the Research Advisory Committee on Gulf War Veterans Illness found that ALS was the most serious condition affecting Gulf War veterans. Other studies have found that military veterans who served during the last century in general have a 60 percent higher risk than non-veterans of developing ALS and have an earlier onset of the disease. In 2010, the Veterans Administration (VA) created a registry to identify veterans with ALS.
The Department of Defense and the VA began investigating a possible link between military service and ALS after the first Gulf War when they noticed an increase in veterans complaining of muscle weakness in the limbs, headaches, joint pain, slurred speech, difficulty breathing or swallowing, memory loss, and chronic fatigue—all symptoms of ALS. Eventually these symptoms were referred to as “Gulf War Syndrome.” Now they are believed to have been early symptoms of ALS.
Twenty years ago, Upper Black Eddy, Pennsylvania resident, Jim Cassidy, was part of an elite Army Special Forces team and went on to serve as an intelligence agent in the Army Reserves. Now life for the 46-year-old veteran is a daily struggle to live with ALS. He uses a wheelchair, eats through a feeding tube and breathes with the assistance of a ventilator. He talks through a special computer program that reads eye movements. Scientists have yet to determine the cause of Cassidy’s ALS, but according to them, his serving in the military put him at a greater risk of developing the disease.
In Cassidy’s state of Pennsylvania alone, 850 people—including 104 veterans—have ALS, according to the Philadelphia chapter of the ALS Association. The Bucks County, Pennsylvania VA office knows of two ALS cases, but director Dan Fraley suspects there are more because ALS is a new service-connected disability. “The VA doesn’t advertise it,” he said.
Patients who go to the ALS Clinic at Pennsylvania Hospital are asked if they did military service, a question which catches them off guard. “They almost always want to know why, which we can’t answer,” said Sue Schwartz, a social worker at the clinic.
Bob Haines, a World War II veteran, was diagnosed with ALS when he was 75. The 82-year-old was shocked to learn that his ALS could be service-related. “I didn’t believe it,” he said. “I didn’t expect this had anything to do with World War II.”
Jim Pinciotti, Executive Director of the ALS Association’s Philadelphia chapter, praises the VA for doing a good job informing the veterans they serve, but he feels they’re not doing enough to get the word out to the general veteran population. “When I speak to a group and speak about this fact, I see faces in the crowd with all of a sudden the realization and panic,” he said.
Cassidy never engaged in combat when he served in the Army nor in the Reserves, according to his wife, Lisa. He had no family history of ALS, yet early symptoms appeared when he was 33. Lisa said he began experiencing weakness in his left hand, which they both attributed to a pinched nerve—despite no pain. The couple became concerned when the weakness progressed to muscular atrophy in Cassidy’s left hand and forearm, which made it difficult for him to grasp things. He developed muscle twitching in his upper arm and chest. After an electromyogram came back abnormal, Lisa, a physical therapist, feared her husband had ALS. However, doctors were reluctant to make a diagnosis because his condition progressed very slowly.
“When he first started with the symptoms, we always feared it was ALS. I actually sat my neurologist down and demanded to know why he didn’t think it was ALS,” she said. “In the back of my mind that is what I feared the most. For every neurology appointment we were in fear, ‘This is the time he’s going to say it’s ALS.'” Cassidy was diagnosed five years later at age 38. Lisa said that by then his speech was slurring and both of his arms were weakened to the point where he needed both of his hands to pick up things. Cassidy left his food scientist job in 2003 and Lisa became the family’s sole financial support. They have two sons, 11 and 9.
His condition continued to deteriorate, requiring him to start using a power wheelchair two years ago and have a feeding tube inserted. Cassidy went on a ventilator earlier this year. Lisa is now his fulltime caregiver. The VA helps pay for her to get extra outside help. She says Jim’s health has improved since he went on ventilator. “As long as he stays free of complications, he can live a pretty long life,” she said.