Much of what causes the 90% of Amyotrophic Lateral Sclerosis (ALS) cases that are sporadic remains a mystery. However, one risk factor that is supported by a large body of evidence is service in the military. Over roughly the past twenty years, a number of studies have shown that veterans’ have a significantly higher chance of being diagnosed with ALS than the general population. According to one study from the Harvard School of Public Health, anyone who served in the military in the past century, in any capacity, has a 53% higher chance of dying from ALS.
Guillermo “Gill” Garcia served his country in the U.S. Navy for four years. After being diagnosed with ALS in 2015, he began working as an advocate, raising awareness of veterans affected by ALS and advocating for them and their families. Today he is the co-chair of I Am ALS’ Veterans Affairs Team.
In celebration of Veterans’ Day, Gill Garcia joined us to share his story, and talk about how he’s fighting for veterans and their families who have been affected by ALS.
Can you give us a little bit of background about yourself, leading up to your ALS diagnosis?
I grew up in San Antonio Texas. Normal childhood and join the Navy right out of high school. I was stationed on a destroyer, the USS David R Ray, as a sonar technician, for four years in and got to see many places all over the world. After I got out, I quickly got a job with the US Postal service. I worked as a mail carrier for about 18 years until my diagnosis. I'm married with 3 adult children. We just recently celebrated our 23rd anniversary.
When were you diagnosed? How has your diagnosis affected you and your family?
I was diagnosed with ALS, November 18, 2015. It has impacted my and my family's lives in so many ways. The obvious, my physical decline and all that comes with it. But I have to say that there have been some very positive experiences, as well. It has really made me appreciate the small things in life. Relationships have grown and I have met some great people and have had great experiences along the way.
What inspired you to get into advocacy?
Advocacy has been a pleasant and rather surprising endeavor, if I am completely honest. I was never really an outgoing person, so to be an advocate was never something I would have seen myself doing. Once I began advocating, opportunities kept presenting themselves and it just became easier and felt like a calling.
How do you feel like your status as a veteran has shaped your experience with ALS?
As a veteran, it presents a different ALS experience than the non-veteran. We are very blessed to have the support of the VA. With that has come a new sense of duty. Having access to some of the best medical care, equipment and services has really opened my eyes to the lack of basic support for the everyday citizen. This has resulted in a strong desire to fight for civilians and veterans alike.
What do you feel like are some of the biggest issues facing veterans with ALS?
As I have said, being a veteran provides us with the best possible care available. Potentially. The biggest problem, I have learned, is standard of care. Care for veterans varies greatly across the nation. Like all care throughout the country, some is great and some not so much. However, the VA system should be relatively standard no matter the location. It is not.
Geographical location should not be a factor in the administration of care and services to a veteran. Not in a day when there is access to telehealth, delivery of products is almost limitless and services can often be rendered or arranged at our fingertips.
Are there any stories from your work advocating for veterans with ALS that you think are particularly inspirational?
I have been privileged to witness so many inspirational stories of veterans with ALS. If I had to pick one, it would be a young man, not much younger than me. He has been living with ALS for a number of years. This has not stopped him from starting a family and most impressive, nearly completing his doctorate. I met him a couple of years ago so he may very well be a PhD by now. The human spirit and will to keep living and accomplishing are amazing.
Anything else you’d like to add?
I would just like to add that I have had the great honor of leading a team of veterans, caregivers and even advocates with no military connection. They are doing some amazing and unprecedented things for the vALS community. We hope that it will cross over to benefit the broader ALS community.
To learn more about Gill Garcia’s advocacy work, visit I Am ALS. To learn about how you can support ALS TDI’s research to end ALS, click here.