For those who served, ALS looms as a new enemy
JOHNSTOWN, Pa. — Todd Russ was a healthy, active Navy veteran in his late 50s when he started noticing some numbness and found himself tripping.
Doctors first thought it was a problem with his back, but two surgical procedures did not help. In fact, his symptoms continued to develop and spread to other limbs, his wife, Judy, said from their Altoona home
A friend read a report about veterans being more likely to contract amyotrophic lateral sclerosis, often referred to as “Lou Gehrig’s disease.”
Todd Russ made an appointment with the James E. Van Zandt VA Medical Center in Altoona.
He was diagnosed with primary lateral sclerosis, which progressed into ALS. PLS is a slow progressing disease affecting motor nerve cells in the brain cells. ALS affects cells in the brain and spinal cord.
“At first he tried to maintain everything as normal,” Judy Russ said. “He fell off a ladder. That was really discouraging to us. He was really active. He was always doing things for people.”
Since the symptoms first developed in 2000, Todd Russ’s condition has deteriorated. Now 70 years old, he must use a walker and has limited use of one arm. His speech is slurred and slow, and he has trouble chewing and swallowing.
But his progression is slower than most with ALS. The average life expectancy is about three to five years after diagnosis. And there is no cure, nurse clinician Janet Goodard said from the John Murtha Neuroscience and Pain Institute in Richland Township.
The neuroscience center hosts the region’s only ALS clinic and support group.
“ALS is a progressive neurodegenerative disease that affects the motor nerve cells in the brain and spinal cord,” Goodard said. “It affects different people in different ways.”
Often, the early signs include a weakness in the hands or arms. There is frequently uncontrolled twitching or muscle spasms, she said.
But Goodard has seen patients whose first symptoms involve speech and swallowing difficulties.
“It is very mysterious disease,” Judy Russ said. “They don’t know where it comes from.
“It is not a kind disease. That’s for sure.”
Todd Russ has an electric scooter he uses outdoors, especially around the couple’s camp at Raystown Lake.
Todd Russ retired from the Juniata Locomotive Shop in Altoona after 30 years. He spends his time at home watching television and playing solitaire on his iPad.
He served on a guided missile destroyer during his stint in the Navy from 1960 to 1962.
“I was a boiler tender,” Todd Russ said. “We were all over the Mediterranean and the North Atlantic.”
He was discharged from the service right before the Cuban Missile Crisis of October 1962.
There are several theories about why veterans are at higher risk for ALS, said Patrick Wildman of Amyotrophic Lateral Sclerosis Association.
“The risk is about twice the general population,” Wildman said. “It crosses all branches of service. It doesn’t matter if they served domestically or abroad, during times of peace or in combat.”
Studies were launched after more ALS was noticed among veterans from the first Gulf War. Research confirmed higher incidence dating back to troops returning from World War I, Wildman said.
The findings led the VA to recognize ALS as a service-related condition, Wildman said. That means that veterans only have to be diagnosed with ALS to receive benefits and medical care. They don’t have to prove they got it from their service.
Goodard said the service-related designation has opened a lot of doors.
“Families get a lot of things through the VA, too,” Goodard said. “Sometimes it’s a fight with insurance companies, but we know the veterans are going to get what they need.”
The neuroscience center’s ALS support group was founded in 2004 through a donation from family of the late Frank E. Mayak, founder of Stoystown Auto Wreckers.
As the only support group between Hershey and Pittsburgh, the Conemaugh Health System outreach touches patients across a wide area, Goodard said.
The national association’s Western Pennsylvania Chapter supplied electronics to allow the support group to include members by video conferencing, even if they can’t leave their homes.
“They can see the group and we can see them,” Goodard said. “They can be part of whatever we are doing that day.”
One patient tuned in each session, despite his severe limitations, she said.
“Even though he couldn’t communicate with us, he had the biggest smile on his face,” she said.
Conemaugh’s Memorial Medical Center in Johnstown will include information about ALS in a display at a Veterans Day program today in the Atrium area, said Barb Duryea, research director at the neuroscience center.
Meanwhile the national association is pressing forward with research, including studies to identify veterans’ susceptibility.
Strenuous activity and exercise in the military might be the link, Wildman said.?It’s one thing veterans and former athletes have in common, and athletes are also more likely to get ALS.
Yankees superstar and hall-of-famer Lou Gehrig was an early patient diagnosed with the disease.
Locally, former Notre Dame All-American and Denver Broncos football star Pete Duranko became a symbol of courage during is decade-long battle with ALS. The Johns-town native died in July 2011.
Exposure to jet fuel and other chemicals used in the military lead to another theory that is gaining attention, Wildman said, noting there are also genetic factors identified in a small percentage of ALS?patients.
The Veterans Affairs Department and Centers for Disease Control and Prevention established ALS patient registries that collect demographic and medical information about patients for research, Wildman said.
“What they have been exploring, is to find some commonality,” Wildman said.
The VA’s registry has now been supplanted by the CDC’s, he noted.
There are no proven risk factors for ALS, and only one drug has been shown to slow it progress in some patients, Goodard said.
Riluzole was approved by the Food and Drug Adminstration in 1995. It has been shown to increase life expectancy by at least a few months, the national association’s website says.
But several drugs being tested are showing promise, Wildman said.
“We are working with researchers around the world,” he said. “It is a great time for ALS research right now.”