Military veterans are twice as likely as the general public to be diagnosed with amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s Disease), regardless of whether they served at home or abroad, during wartime or at peace. The reason for the disparity is not known, but the U.S. Veterans Administration recognizes ALS as a service-related disease.
ALS is a fatal, progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Eventually, people with ALS lose the ability to move, speak, swallow – and eventually breathe – while they otherwise remain completely aware of what is happening to them. The average life expectancy of a person with ALS is two to five years from diagnosis. There is no cure, and only one drug approved by the U.S. Food and Drug Administration modestly extends survival.
Golden West Chapter celebrates veterans like Army Sergeant Kay Thomas of Fremont, California, who served for her country from 1974-1977, only to wage a new battle against ALS – a battle that ultimately will take her life.
Kay, and her husband Phil who is also a veteran, are featured in a new video entitled “The ALS Nation.” This poignant public awareness film also features personal testimonies from California State Senator Art Torres (Ret), Vice-Chair of the Governing Board, California Institute of Regenerative Medicine (CIRM), and from Catherine Lomen-Hoerth, MD, PhD, Director of The ALS Treatment and Research Center at the University of California, San Francisco, as well as others who share their experiences with the disease and their commitment to find a cure.
One of the challenges of living with ALS that Kay has found the most frustrating is how people treat individuals in wheelchairs. “When someone is confined to a wheelchair and has lost the ability to move or even to communicate, without meaning to, people will direct their questions to those around the person with ALS, instead of speaking to them directly,” Kay shared. “Don’t demean us further by not treating us as a person.”
“Watching the woman I love deal with ALS is difficult,” said Army Reserve Major Phil Thomas (Ret). “Kay is a strong-willed, graceful, brave lady; nevertheless, it is difficult to watch her illness progress. I want her to feel she can always depend on me. It breaks my heart to realize this is something I can’t fix, no matter what I do.”
“Our military veterans dedicated themselves to defending our country, and then many of them have had to battle for their lives against ALS. We need to continue to fight for them, just as they have fought for us,” said Fred Fisher, President and CEO of The ALS Association Golden West Chapter. “In California, we have a very large veteran population. Many veterans with ALS don’t know that they are eligible for significant health and disability benefits, including monthly compensation, to help them and their families with the medical and financial burdens of the disease. Also, survivors of veterans who have died from ALS are eligible for benefits, including monthly compensation, even if their loved one passed away years or even decades ago.”
This Veterans Day, The ALS Association Golden West Chapter is once again honoring veterans with ALS with its Wall of Honor, which profiles more than 250 veterans who have battled ALS, from every branch of the military and almost every state in the country. It includes veterans living with ALS and those lost to the disease, as well as veterans who served in nearly every era, from before World War II to the conflicts in Iraq and Afghanistan.
“We hope that our veterans’ stories will raise awareness about the devastating effects that ALS has on even the strongest and bravest among us,” Fisher continued. “We owe it to all people living with ALS to fight to find a treatment as soon as possible and to ensure that all of our heroes living with ALS receive the services and benefits they need, deserve and have earned.”
To learn more about the connection between ALS and military service, as well as the benefits that are available to veterans with ALS and their survivors, please visit the Chapter’s website.
About The ALS Association Golden West Chapter
The mission of The ALS Association is to lead the fight to treat and cure ALS through global research and nationwide advocacy while also empowering people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The ALS Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure. The Golden West Chapter serves people with ALS and their families in 31 counties throughout California and in the state of Hawaii. For more information about The ALS Association Golden West Chapter, please visit www.alsagoldenwest.org or send an email to info@alsagoldenwest.org.