'I battle with feelings:' ALS patients & their loved ones on living with a life-altering disease with no cure

Amyotrophic lateral sclerosis, or ALS, is a deteriorating disease that robs people of their ability to walk, talk, and eventually, breathe.

The neurodegenerative disease became more widely known when beloved baseball player Lou Gehrig was diagnosed with it. Today, there is still no cure for it.

However, scientists and doctors believe we are getting closer to finding a cure as more medications proven to slow progression are given to patients. The most recent one, a treatment called tofersen, was approved by the FDA this past April.

One ALS patient, Marty Kernutt, is on one of the newer medications. For six years, Kernutt has been living with ALS. He, along with many other sports fans, pays homage to Gehrig on June 2: the day the iconic first baseman died.

“With Marty being a big sports guy, I said, 'Of course you have to get a disease that's named after a sports person,'” said Christina Kernutt, Marty’s wife.

Marty and Christina say they've learned to laugh when times are tough.

The Kernutts live in Virginia Beach with their two daughters. Christina says she and Marty went from best friends, to high school sweethearts, to husband and wife. Over the last six years Marty, says his ALS diagnosis had caused his spouse of 18 years take on more responsibilities.

“I have a wife who's also my caregiver, barber and therapist. She amazes me every day. She goes through the day as if caring for me was always part of the routine,” said Marty.

According to the ALS Association, about 90% of ALS cases occur without any known family history or genetic predisposition. The other 10% of ALS cases are caused by an inherited gene. Prior to his diagnosis, Marty says he was healthy.

“I hadn't even broken a bone,” said Marty.

Marty says starting in 2017, warning signs began to indicate that something was wrong with his health.

“There were little things that didn't seem right, where he stepped off the front porch and fell... He couldn't shoot a basketball," said Christina. She recalls him telling her, "I know I'm out of shape, but I can't even get a basketball to the rim."

Marty says the symptoms progressively worsened.

“My arm muscles burned one night, and throughout the year, I lost grip strength,” said Marty.

The ALS Association says most patients are between the ages of 40 and 70 when they are diagnosed with the disease, though some cases occur in patients in their 20s and 30s. Kernutt was 35 when he found out he had limb-onset ALS. Christina says it's a disease that impacts everyone differently.

“It’s hard to say because there [isn't] one set of symptoms. There’s no blood test you have to have an MRI to rule all these other things out, so I think that's why it's so hard to diagnose,” said Christina.

ALS will cause a person's brain to lose connection to their muscles. Over the last few years, the progression of Marty’s disease has cost him his ability to walk, feed himself, move and even talk on his own.

“There are small things about ALS that are difficult: not being able to eat, because I love food, and not being able to give someone a hug,” said Marty.

Marty uses a special device that senses the motion of his eyes to do things like turn on the television, text Christina and even talk in his real voice.

“I battle with feelings... My daughters got jipped a father, my wife was jipped a husband. But then I remind myself that there are kids out there who may be missing a parent completely,” says Marty.

Typically, patients with ALS will only live two to five years. The estimated out-of-pocket cost to care for someone with the disease is around $250,000.

The development of a drug to slow or stop progression costs $2 billion, which is why fundraising is so important. Christina says it's part of the reason why Marty is able to take one of the newer FDA-approved drugs called Radicava.

“He's been on it for six years and I think it has slowed his progression,” says Christina.

Marty says he and his family have come to terms with the fact that there's currently no cure for ALS.

“The brain is the biggest mystery of life. It's still a ways off, but we're taking steps to get there,” says Marty.

For them, it's not about how much time they have left together: it's about how they spend it, whether it's playing a game with his daughters or going in for a family hug.

“Family and having a good support system are more important that any medicine I could take,” says Marty.

Steve Kolb, says he too has felt the crushing impact of the disease.

“If you walked into an ALS support group and said, "Hey, we've got a cure. We've got one, it's ready to go. Unfortunately, it's going to cost you an arm,' I think everyone would just look at each other for a few seconds and say, 'Okay, which arm?'” said Kolb.

Kolb says ALS took the life of his late wife, Virginia, who he met at the Wheaton College Conservatory of Music. He says the two of them went together like a harmony and melody.

“It was just wonderful. It was delightful, it was just a great joy to make music with her,” he said.

Unfortunately, Virginia would eventually lose her voice and much more.

“She had a deteriorating muscle in her thumb, so her thumb wasn't working well. Her speech was slightly slurred,” said Kolb.

When she started to have trouble speaking, Virginia went to see a neurologist, but Steve says a diagnosis didn't come easy.

“A lot of times people have a hard time getting an ALS diagnosis because it is a rare disease and even a lot of highly qualified medical professionals don't recognize it,” said Kolb.

According to ALS.org, it's only through a clinical examination or a series of diagnostic tests that will rule out other diseases, like multiple sclerosis and Parkinson's, that mimic ALS.

Steve says it was about six or seven months between the time Virginia started having symptoms and was officially was diagnosed with ALS.

Dr. Andrew Galbreath, a neurology specialist for Sentara, treated Virginia once she developed ALS. He says while some patients can live two to four years after a diagnosis, others can live up to ten years. Dr. Galbreath says if doctors can find out why that is, the medical community would be a step closer to a cure.

“I think the key is to figure out what makes [those with ALS who live longer] an outlier and how to potentially harness that and have more people be slowly progressing with ALS,” said Dr. Galbreath.

Together, Steve and Virginia participated in fundraisers to support studies for ALS. At one point, Steve says there was one for Virginia's particular form of ALS.

“We raised over a third of a million dollars with those fundraisers. A drug company heard about it and they kicked in the rest and we got up to a million dollars. And that study was very fruitful and it set the stage for clinical trials that are now ongoing,” said Kolb.

Virginia wasn't able to participate in clinical trials because she couldn't pass the breathing test. But before she died in 2014, Steve said she asked him to donate her brain and spinal cord for ALS research.

“It really is a heroic act. It's like saying, 'I'm going to use my life to benefit someone else at some point in the future,'” said Kolb.

After her death, Steve says he played the piano at Virginia's memorial.

“I played [a song] at her service as part of the prelude of the service, and I couldn't imagine stopping the piece because it felt like stopping the piece was actually saying goodbye,” said Kolb.

Today, Steve is remarried, but runs a support group online for families of loved ones with ALS. He continues to advocate for a cure, and says he's extremely optimistic there will be one soon.

“Somebody is going to be the first to really benefit from some profound breakthrough,” said Steve.