A Veteran With ALS Wants Every Service Member to Know About These VA Benefits

John had been a pilot, scuba diver, martial artist and marathon runner. In August 2019, while swimming, he noticed he was having trouble holding the fingers of his left hand together.

Like most athletes, he didn’t think much of it at first. “It will get better until it doesn’t, but because ALS is so subtle, it’s hard to connect the dots at the time,” John said.

This Veterans Day, John, a veteran and patient advocate living with amyotrophic lateral sclerosis (ALS), spoke with The Educated Patient about his long road to a diagnosis. He also explained why he wants every veteran with ALS to know what the U.S. Department of Veterans Affairs (VA) can offer. Veterans are 1.5 times more likely than the general public to develop ALS.

A diagnosis that took 2 years

About three months after the first symptoms, John noticed he could no longer catch a tennis ball with his left hand. That’s when he went to a doctor. His primary care physician suspected carpal tunnel syndrome and prescribed a splint, but his symptoms got worse.

Over the next two years, during the COVID-19 pandemic, he went through physical therapy, an orthopedic consult, X-rays, MRIs, nerve conduction studies and finally electromyography (EMG). The tests ruled out other causes in his brain, spinal cord and nerves. He explained that ALS is diagnosed by elimination, so doctors must rule out everything else and watch how symptoms change over time.

In August 2021, a doctor first told him he probably had ALS.

The delay matters, he said. Many clinical trials require patients to enroll within 12 to 18 months of their first symptoms, so many people are no longer eligible by the time they’re diagnosed. Seeing an ALS specialist can help, but access varies widely by state. “You need to be your own advocate,” he said.

How VA benefits lift the financial burden

ALS is treated as a presumptive service-connected disability. Veterans with at least 90 days of active service qualify for a 100% disability rating without having to prove the military caused their disease.

That rating brings medications, equipment, home modification grants and other support. John said ALS care can cost about $250,000 a year for people without VA benefits. Without that support, families can face choices like a mortgage payment versus a month of medication.

“The VA for this particular disease is the gold standard for both treatment and for equipment, supplies and medication,” he said.

Benefits can also continue for a surviving spouse, which matters because “ALS affects two people: the person with it and whoever takes care of them,” John said. Caregivers often have to leave work to provide around-the-clock care.

A missed opportunity that drives his advocacy

Around the time of his diagnosis, John learned that a teacher at his daughter’s high school, an Army veteran, also had ALS. He doesn’t think the teacher knew the VA could help, and the teacher kept working until he could no longer stand. He died about a year and a half after his diagnosis.

“I would hate for someone to miss the opportunity to get a few years or months of life,” John said.

Where newly diagnosed veterans can start

John recommends that newly diagnosed veterans contact Paralyzed Veterans of America (PVA) first. The organization covers ALS and multiple sclerosis, not just spinal cord injuries. A PVA representative, often located at a VA ALS center, can file the VA paperwork and apply for grants on a veteran’s behalf.

He also points veterans to the VA’s ALS handbook, which outlines the benefits they’re eligible for. Order can matter. He learned too late that veterans may benefit from applying for the one-time Independent Living grant through Veteran Readiness and Employment before the Specially Adapted Housing grant, which stays open until the funds are used up.

Tips like that often come from other veterans. Online groups and video calls have become a lifeline for John. Fellow veterans with ALS can tell him, “This is what’s coming next. This is what you need to do,” he said. More resources are available at ALSVeterans.com.

“I’m John first”

Many veterans with ALS also visit an outside clinic so they can take part in clinical trials and investigational treatments. John keeps his VA care team informed about it. He said hope and optimism matter, along with “taking care of what you have while you have it.”

Since his diagnosis, he and his wife have traveled to 25 countries on every continent. He uses a wheelchair and needs help with eating and other daily tasks. “Life is different, but you still have a life,” he said.

He hopes people will see the person first, not the disease. “I am John, who had a full life, and I still have a lot to offer. I have ALS, but I’m John first,” he said.