While the underlying cause of amyotrophic lateral sclerosis (ALS) remains unknown, there are some factors that may increase the likelihood of developing the disease. One particularly striking connection is between ALS and military service. A study conducted by Harvard University found that veterans are 53% more likely to develop ALS than the general population. The reasons behind this connection are one of the most pressing questions facing ALS researchers today.
David Brattain was a devoted husband, father, grandfather, and army veteran who passed from the disease. He was a committed volunteer at both the VA Hospital and the Veterans ministry at Hero Family Outreach. Today, Dave’s wife Jill continues to be an avid supporter and advocate for ALS research and awareness. Read on to learn more about Dave & Jill’s story.
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Can you introduce yourself and tell us about Dave’s military background, including the branch of service, years served, etc?
My name is Jill Brattain and I am the widow of David Brattain, an army veteran who served during the Vietnam war. Dave and I were married for 31 years. I met Dave after his service and was not even aware of his time in the army until his diagnosis of ALS in 2015. We have three grown children and 5 grandchildren. Although David was able to be at all our children's weddings, he was only able to meet two of our grandchildren. Our lives together were magical and too short, as any widow will tell you. I thought we would have so much more time.
Can you describe Dave’s journey to diagnosis?
Dave's ALS is 100% service connected, which means the VA has deemed ALS a disease that is linked to the time Dave spent in the military.
Dave showed symptoms of weakness in his left arm in the summer of 2014 and was officially diagnosed at the Mayo Clinic in Rochester, MN on May 5, 2015. We pursued a diagnosis persistently. After seeing a spinal specialist that thought the weakness was a pinched nerve, our son who has a degree in Kinesiology suggested we see a neurologist. We saw a local neurologist who was quite thorough in his exam and testing. He called us into his office the day after testing was complete and told us he suspected ALS. He also shared that he had never diagnosed someone with ALS before Dave. I think he cried as much as we did that day. He referred us to the Mayo clinic.
What types of medical and support services are received after an ALS diagnosis, both within and outside the VA healthcare system?
Our care from the Richard Roudebush VA in Indianapolis was both excellent and very personal. They took the time to know us and what Dave's wishes were for his care, they were respectful and compassionate. Dave and I searched for clinical trials and researched potential treatments or interventions that might help to slow his progression.
How has ALS TDI or other organizations helped you and your family cope with ALS?
ALS TDI was one of the first organizations we contacted. Rob Goldstein was amazing and very helpful in directing us to information about clinical trials and experimental treatments. We also worked with our local ALSA chapter and with Dr. Bedlack’s ALS Untangled website, and we both became NEALS research ambassadors. Every organization we contacted was very willing to answer questions and provide information, but none were able to partner with us or stay in regular contact with us.
How do you think awareness and support can be improved for veterans who are diagnosed with ALS?
Veterans have a difficult task of navigating the VA benefit system as well as dealing with the health issues of ALS. Although many ALS-VA clinics have accomplished professionals, many are lacking the knowledge needed to help veterans with all the areas that need to be addressed. Each veteran needs an advocate that can assist them in benefits, healthcare, and emotional support.
Have you connected with other veterans who are living with ALS, and what kind of support network have you found within this community?
When Dave was being seen at our local VA, the social worker there; Leah Darling, started a support group for PLWALS (people living with ALS), their caregivers and family. We met once a month and to this day I am still in contact with the widows of the people in that support group. It was invaluable and a perfect way to share and learn from other PLWALS.
Have you been involved in any veteran-related advocacy efforts or organizations, both before and after joining the ALS community?
Before Dave was diagnosed with ALS, he and I were volunteers at the VA hospital where he was eventually seen. We also were part of the Veterans ministry at Hero Family Outreach.
While not a veteran-related organization, after Dave passed, I founded a group for people who have lost a loved one to ALS. The organization, called Still Standing-ALS, has several widows and widowers of ALS, as well as family members. It is imperative that we are still available to these amazing caregivers.
I also volunteer for the veteran group at I AM ALS, we have made many connections with the VA that have led to changes in the care for VLWALS (Veterans living with ALS).
I volunteer with several other ALS focused groups where I bring the Veteran viewpoint into the group.
How do you see your experiences contributing to the broader understanding of ALS and the challenges faced by veterans with the disease?
Education will always be a top priority both for the public and for those newly diagnosed. As someone said "knowledge is power" we need that power in our ALS Veteran community to fight this beast. The public needs to know that Veterans are up to 10X more likely to receive a diagnosis of ALS.
We are a military family as our son is currently active military. It is a frightening thing for me to think that both my husband and our son volunteered to defend this country and may pay with their lives without ever seeing war. The fear of losing your life in the service to your country is always forefront when ALS is involved.
How have you and your family coped with the challenges and emotions that have arisen during this journey, and how have you supported each other through it?
Any veteran family will tell you that their veteran is tough, independent, and strong. To face a life-limiting disease like ALS is heartbreaking, devastating, and frustrating when you find out that it is 100% service connected. Dave and I were a team, we ran our business together, we raised our family, we worked, played, and worshiped together. The only thing that could break us apart was death. The journey with ALS was one that brought our family closer, our motto through it was "no regrets". Our children were 26, 24, and 21 when Dave was diagnosed. They were in different stages of life and different locations of the country, but we all came together for family trips, holidays, and anytime Dave felt the need to gather. We now can look back and say we did everything we could to fight this dreadful disease and although our hearts are forever broken, we know that we have no regrets.
Is there anything else you would like to share about your experience, your message to the public, or the importance of supporting veterans with ALS?
Me and our children are forever changed from the moment Dave was diagnosed with ALS. I will never stop fighting for a cure, fighting for recognition, and providing a place for all those affected by this devastating beast. One of the battle cries in ALS is that it is not a rare disease, but an underfunded one.
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At the ALS Therapy Development Institute (ALS TDI), we are dedicated to learning more about what causes all cases ALS – including what makes people who have served in the military so much more likely to develop the disease. Veterans are particularly encouraged to enroll the ALS Research Collaborative (ARC), a global study in which people with ALS contribute data to help learn about the disease and speed up the development of treatments.
ALS TDI also recently received a grant from the CDC to fund the investigation of non-genetic ALS risk factors. Learn more about that grant here.
To learn more about ALS TDI and our research to end ALS, click here.
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