Amyotrophic Lateral Sclerosis (ALS) takes many things from the lives it touches – but it doesn’t have to take away hope. When Army National Guard Veteran Bill VanderPloeg was diagnosed with ALS it felt like “a death sentence” to him and his wife and caregiver, Leanne – until they turned to VA.

ALS, also known as Lou Gehrig’s Disease, is a fatal neurodegenerative disease that over time causes people to lose the ability to initiate or control muscle movements, speak, eat, move and breathe. ALS symptoms and the severity of the disease’s onset and rate of progression vary considerably, but approximately 80 percent of people with ALS die within two to five years of a diagnosis.

Bill was diagnosed with ALS in 2017 and given three to five years to live. But six years after his diagnosis and nine years after his first symptoms appeared, Bill is still able to speak, eat, play with his grandson and participate in one of his favorite pastimes: going to car shows.

Bill and Leanne attribute a lot of this success to the hope, support and care they’ve received since coming to VA. “Before VA was involved, I was really depressed – [I was told] there’s really nothing they could do,” says Bill. “I’m not a machine – I have feelings, I have hope, I have desires. These are things that keep me going, and at [VA] they give me the compassion and the willingness to say, ‘Well, let’s give it a try, let’s see what happens.’”

This hopeful, anticipatory, Veteran-centered mindset distinguishes VA’s approach to ALS care and can lead to better outcomes for Veterans with ALS.

“There are a lot of things we can do to not only improve the quality of life for Veterans with ALS, but also extend their life expectancy,” says Dr. Ileana Howard, medical director at the ALS Center of Excellence at VA Puget Sound Health Care System in Seattle. “One of the most important is interdisciplinary care, where the entire ALS team comes to the Veteran in the clinic to provide the best, most coordinated care.”

From in-home skilled nursing care to essential equipment such as ventilators and wheelchair lifts, VA has anticipated Bill’s needs as the disease progresses, providing his family with resources and education in enough time to adapt.

For example, VA sent a wheelchair to the VanderPloegs’ home for Bill to practice with, though Leanne believed he would never need one. By the time Bill’s condition progressed to the point of being wheelchair-bound, he was already comfortable using it.

Proactive care like this helps to provide hope for the future, ease the physical and emotional discomfort of ALS progression – and in this case, allow Bill to continue to flex his car repair muscles. Recently, using his wheelchair to get outside, he talked his visiting nurse, Gene, through repairing his car – something Gene could never have done without Bill’s help.

Like many Veterans with ALS, Bill and Leanne came to the Puget Sound ALS clinic after being referred by a provider outside of VA after learning Bill was a Veteran. Although many Veterans with ALS and their loved ones come to VA believing there is little hope, Dr. Howard says that is the furthest thing from the truth. “Our ALS clinics not only offer hope, but we also deliver on that promise by providing the resources and equipment that those Veterans and their family need to have the highest quality of life.”

To learn more about the ALS care VA provides to patients, support and education for caregivers, and ways you can contribute to ALS care coordination, please visit the National ALS Resource and Guidebook.

To help provide hope to your ALS patients by better understanding their needs, check out this video – VA Offers Hope: Understanding Our ALS Patients’ Needs – to hear Bill and Leanne tell their story in their own words.