The Arizona RepublicKen Jones is a pioneer of sorts in the war on Lou Gehrig’s disease. He was one of the first Arizona veterans to receive benefits after the condition, known as amyotrophic lateral sclerosis, was declared a service-related disease.
And that puts him at the head of what veterans’ advocates and doctors say could be a wave of diagnoses as tens of thousands of servicemen and -women return from the wars in Iraq and Afghanistan.
The Department of Veterans Affairs designated ALS a “presumptive service connection” disease in 2008 after studies suggested military members who served in the Persian Gulf War were up to twice as likely to develop the disease as average Americans. Information linking the Persian Gulf War to ALS took more than a decade to study, so any effects the current wars have on ALS numbers may not be known for several years.
The service-related distinction allows military veterans with ALS, whether they served in the Gulf or in earlier wars, to claim benefits that help them cope with the devastating effects of the progressive neurological disease, such as motorized wheelchairs and specialized vans for transportation.
Despite being diagnosed with ALS in 2008, five years after developing symptoms of a related disease, primary lateral sclerosis, Jones, a 77-year-old Korean War-era vet, still lives on his own, watches the news, takes naps and plays bridge and pinochle on his computer.
He also feeds himself through a feeding tube, drives short distances, walks with help from a walker and speaks, though with some difficulty.
As a part of the benefits Jones received from the VA, he was given a $40,000 power wheelchair last year and a custom van with a ramp, power sliding doors and “low-effort” braking and steering.
Jones first noticed something was wrong in 2003 when he started having trouble drinking water. Over the next six months, Jones had trouble talking and noticed his legs were weaker.
When he was diagnosed with primary lateral sclerosis in 2003, a neurologist told him there wasn’t anything he could do to stop the disease, which eventually developed into ALS.
Various physical therapies can help relieve some symptoms, and a regimen of medication is typically prescribed, though effectiveness varies.
“We can’t stop the disease, but we try to outrun it as long as we can,” said neurologist David Saperstein, co-director of the ALS clinic at Banner Good Samaritan Medical Center in Phoenix.
Saperstein said any major breakthrough in treating ALS would likely be in slowing the disease, not curing it, and even those developments could be years off.
Several studies have been released recently regarding treatment of ALS through stem cells. Saperstein said he is “guardedly optimistic” that these studies will help science learn more about the disease.
The cause of ALS is unknown, but Saperstein said a buildup of toxins in the spinal cord could be a suspect. About 10 percent of ALS cases are hereditary, but the cause of the other 90 percent of cases could be a caused by environmental factors, the deterioration of cells or genetic susceptibility.
Even less is known about why military members are up to twice as likely as the general population to develop ALS. Some theories suggest military members aren’t more susceptible but that military doctors are more likely to correctly diagnose the disease, which is commonly misdiagnosed.
Lou Gehrig’s disease seems to attack physically fit people more often, so another theory holds that military members may have a higher propensity because they tend to be in better shape.
Jones’ case is unusual because most people diagnosed with ALS are between age 40 and 50 and they typically survive only three to five years after diagnosis. However, up to 5 percent of patients survive for 20 years or more, generally because the disease stops progressing for unknown reasons, according to the Arizona ALS Association.
Jones intends to donate his body to science and said he hopes scientists can learn something from him after he dies.
Even though Jones has a measure of independence, he still depends on help. Two days a week, nursing assistants come to his home to move food cans within his reach and help him bathe. He also attends a monthly support group at the Mesa Baptist Church.
“It’s nice to be with people who understand,” Jones said. “You don’t have to explain anything.”
Jones contacted the ALS Association Arizona Chapter and went to his first support group meeting in May 2008.
Since then, Kim Hughes, the director of patient and family services at the ALS Association Arizona Chapter, has taken interest in his case and worked closely with him. Hughes, who runs Jones’ support group in Mesa, says Jones has become so important at the meetings, the other members ask where he is when he misses a day.