My ALS Story: Leo James

man's hand on left wheel of wheelchairAmyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease, has presented several challenges for Navy veteran Leo James, including his ability to walk. But there’s one thing ALS has not taken away from him: his ability and drive to advocate for a cure.

Leo of Pottsville, Pa., has not let his disease waiver his desire to advocate for funding to find a cure for ALS. For the past two years, he’s gone to Harrisburg, Pa., and Washington, D.C., to meet with legislators to ask for help for the ALS Association. In Washington, he’s encouraged lawmakers to fund ALS research programs at the Defense Department and the Centers for Disease Control.

“Even though I’m living with this disease, I’m fighting it in any way I can,” he says. 

Leo’s military service dates back to 1971, when he served on an ammunition ship off the coast of Vietnam. Since leaving the military in 1973, he has worked various jobs at textile plants and distribution centers.

In 2011, while working at the shipping department of a distribution center, Leo started to notice that he was walking with a limp, and things that previously had not felt heavy to him suddenly did.

“I was off of work for 18 months prior to that job, so I just thought I was out shape and just getting older,” he says. “Then, I started tripping over my feet. That’s when I told my family that I needed to go to the doctor because I knew something wasn’t right.” 

After visiting his family doctor and some local neurologists, Leo was referred to the medical center in Hershey, Pa., where they ruled out other neurological diseases like multiple sclerosis. In August 2011, Leo was diagnosed with ALS. “Within a year, I went from a cane with leg braces to a walker with leg braces, and now I’m in a wheelchair because I can no longer walk,” he says.

Leo did not know that ALS was a service-connected disease until the doctors recommended that he contact Paralyzed Veterans of America. A service officer from Paralyzed Veterans called Leo the very next day to help him begin his application for benefits. “She guided me through the whole process of getting benefits, and I got them within three months,” Leo says. “I think that’s record time with the VA.”

Leo says his support system includes his children as well as his two sisters and brother, all of whom take turns helping him with daily tasks like dressing and getting into bed. Leo also owns a van that he can drive with his hands, and that helps him maintain his independence for now, he says. “As long as I do that, I’m not considered home-bound by the VA, so I don’t have access to home aids,” he says. “But I’m happy with the help I have now.”

Leo acknowledges the many challenges associated with living with ALS. But despite those challenges, he encourages all who live with the disease to advocate for the disease and a cure.

“If you’re living with this disease and aren’t advocating for it, you ought to consider it,” he says. “When the legislators hear from us directly, they do listen. And that’s how we’re going to find a solution to this.”

Learn more about ALS 

Brittany Ballenstedt is a freelance journalist whose work has appeared in several publications, including Government Executive, National Journal, Technology Daily and NextGov.com. 

 

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    My ALS Story: Leo James