My ALS story: Edward Locke
While amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease, poses several challenges for those diagnosed with the disease, it’s important not to dwell on challenges but focus on the most important things – “like friends, family and the next project in the works,” says Edward Locke, who has had symptoms ALS since 1985.
After graduating from West Point in 1967, Ed attended Ranger school and Airborne school and was assigned to the 82nd Airborne. In February 1968, due to the Tet Offensive, Ed was deployed to Vietnam, where his service earned him a Purple Heart and two Bronze Star medals with a V device.
In 1985, Ed started experiencing symptoms of ALS, but in 1987, after his exit the Army physical, he asked for benefits but was denied. After ruling out multiple sclerosis and primary lateral sclerosis as potential diagnoses, doctors determined that Ed had upper neuron dominate ALS, the same form of the disease that famous theoretical physicist Steven Hawking has had for more than 50 years.
Ed credits Paralyzed Veterans of America as being instrumental in getting his full benefits from the Veterans Administration, which in 2008 began recognizing ALS as a presumptively compensable illness for all veterans with 90 days or more of continuous active service. After being denied by the VA for additional benefits for special care, Paralyzed Veterans stepped in to secure those benefits even after Ed had given up hope. “Now if I can get benefits back to the start as other veterans receive, I will be even more grateful,” Ed says.
The greatest challenge in living with ALS is not having the ability to talk, says Ed, who has to rely on a keyboard attached to his wheelchair to communicate. Next month, he will receive a tool from the VA that will speak for him, he says.
But despite the day-to-day challenges, Ed says he tries to remain positive.
His greatest support system is his son, with whom he lives. “He drives me to my appointments and helps me with any crises that may arrive,” Ed says. “He is invaluable in providing me a great quality of life.”
Brittany Ballenstedt is a freelance journalist whose work has appeared in several publications, including Government Executive, National Journal, Technology Daily and NextGov.com.