My ALS Story: Jay Lanin
While amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease, has been a challenging disease for Army veteran Jay Lanin, he still manages to start each day by counting his blessings.
“ALS is relentless,” Jay says. “I get a little weaker every day, a little more incapable every day.”
Jay served as an infantry rifleman and later with the Special Services in the Army from 1952 to 1954.
In the early 1990s, Jay noticed he was falling for no apparent reason. After undergoing several tests, doctors diagnosed him with Primary Lateral Sclerosis, a slightly less severe neuromuscular disease that affects only the upper motor neurons. But in time, his diagnosis was changed to ALS, a more severe disease that affects both the upper and lower motor neurons.
Jay was registered at the local Paralyzed Veterans of America office by a social worker at the spinal cord injury clinic at his local VA hospital. He began to receive Paralyzed Veterans’ monthly newsletter, and it was there that he read about the Veterans Administration’s designation of ALS as a service-connected disease in 2008.
“The NSO (National Service Officer) at the local office, Richard Martinez, thereupon secured the generous compensation for myself, my wife and my caregiver, entirely on his own, for which I am extremely grateful,” Jay says.
Jay also went to one meeting of the local ALS support group, where he met a man named Foster Hall, who has lived with ALS for more than 30 years. “He handed out instructions on how to live with ALS, and they became a mantra for me,” Jay says.
Jay relies on the “wonderful” caregiving of his wife, as well as a hired caregiver for the past eight years and now a new caregiver from a local home agency.
Now, having lived more than 21 years with ALS, Jay says his disease has progressed to the point where he can no longer move his tongue. In spite of the challenges, however, he still manages to keep a positive attitude.
“Don’t waste your energy trying to cure the incurable, but instead, thank the universe for the blessing of the life you’ve already had,” Jay says.
Brittany Ballenstedt is a freelance journalist whose work has appeared in several publications, including Government Executive, National Journal, Technology Daily and NextGov.com.