Understanding ALS
- Eric Dane, 53, known for acting in “Grey’s Anatomy,” is battling ALS and receiving care from “24/7 nurses,” with support from his estranged wife, Rebecca Gayheart, 54, who sometimes steps in to cover shifts.
- Despite filing for divorce in 2018, Gayheart stressed that their relationship continues to be defined by a deep “familial love,” with her devoted to supporting Dane and setting an example of care for their daughters. She also pointed out the unpredictable nature of ALS, emphasizing making the most of family moments amid uncertain times.
- According to Johns Hopkins Medicine, amyotrophic lateral sclerosis (ALS), which is also known as Lou Gehrig’s disease after an iconic baseball player who passed away from the disease, is a fatal type of motor neuron disease.
- “It causes progressive degeneration of nerve cells in the spinal cord and brain. ALS is one of the most devastating types of disorders that affect nerve and muscle function,” Johns Hopkins explains, noting that the disease doesn’t affect senses, like seeing or hearing, and mental function. It’s also not curable.
- Being a caregiver is a complex and rewarding job. And taking a step back from the role from time to time might just help you give the best care possible. For more resources on support for caregivers, sign up for SurvivorNet’s caregivers guide.
Dane, also loved for his roles as Cal Jacobs on HBO’s “Euphoria” and Captain Tom Chandler in the TV drama series “The Last Ship,” went public with his diagnosis of a progressive neurodegenerative disease called amyotrophic lateral sclerosis, otherwise known as ALS and Lou Gehrig’s Disease, back in April 2025.
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Recounting how she couldn’t cover the full shift, and needed to ask two of Dane’s friends—one with no prior caregiving experience—for help, she admitted how happy she was that they “responded immediately” and were able to assist in anything needed.
She reflected that not everyone has been as supportive as Dane’s two friends. However, a talk with her therapist on how people struggle in such arduous situations, helped her understand why others haven’t been as present.
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Gayheart, who reportedly filed for divorce from Dane in 2018 after 14 years together, but dropped the proceedings earlier this year, also acknowledged that their love “may not be romantic,” emphasizing how it remains “a familial love.”
She said, “Eric knows that I am always going to want the best for him. That I’m going to do my best to do right by him. And I know he would do the same for me.
“So whatever I can do or however I can show up to make this journey better for him or easier for him, I want to do that. And I want to model that for my girls: That’s what you do. That’s the right thing to do.”
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Recounting how Dane’s loved ones have made more of an effort to spend time with him, Gayheart explained, “This year, the girls and I have spent a lot of time at Eric’s house, which is about a 12-minute drive away from our home.
“We have a lot of meals together. We do a lot of drop-by visits … We wanna take advantage of the time that he has right now.”
She added, “He made it very clear that he wants to spend time with his family as much as possible, and I am committed to facilitating that. That was an easy conversation to have.
“Some of the harder conversations—about down the line, two or three years from now, what does that look like?—we haven’t really started to have, or we sort of touched on them, but they are just too sad.”
As for how Dane is coping with ALS, she said “there really isn’t a road map” … “no matter how prepared you are, or how much I prepare the girls, or how much Eric prepares himself, he’ll wake up one morning and there’s something else that is an obstacle, or he’s lost the ability to do one more thing. It just comes out of nowhere. It’s a terrible, terrible disease.”
Back in June, Dane told E! News he was determined to “ride this till the wheels fall off.”
Referring to work, he said, “It keeps me sharp. It keeps me moving forward, which is super important right now.
“I feel great when I’m at work. Of course, there have been some sort of setbacks, but I feel pretty good. My spirit is always pretty buoyant, so at the end of the day, that’s all that matters.”
More recently, Dane spoke on a panel for the I Am ALS organization, saying, “I’m fairly limited in what I can do physically as an actor, but I still have my brain, and I still have my my speech.
“I’m willing to do just about anything. I’ll take on any role, but I think from here on out, it’s going to have to be, you know, ALS-centric.”
He added, “It’s gonna be very difficult for me to play any other role where, you know… look at the 800-pound gorilla in the room. And I’m fine with that. I’m fine with that. I’m grateful that I can still work in any capacity.”
Dane also stressed how important it is for him to share his journey with as many people as possible, saying, “I don’t feel like my life is about me anymore.”
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Understanding Amyotrophic Lateral Sclerosis (ALS)
According to Johns Hopkins Medicine, amyotrophic lateral sclerosis (ALS), which is also known as Lou Gehrig’s disease after an iconic baseball player who passed away from the disease, is a fatal type of motor neuron disease.
“It causes progressive degeneration of nerve cells in the spinal cord and brain. ALS is one of the most devastating types of disorders that affect nerve and muscle function,” Johns Hopkins explains, noting that the disease doesn’t affect senses, like seeing or hearing, and mental function. It’s also not curable.
ALS usually affects people between the ages of 40 and 70, but it has been seen in younger people. It also affects all races and ethnic groups.
Johns Hopkins explains there’s two types of ALS:
- Sporadic. The most common type of ALS the U.S., making up 90% of cases. These cases arrive randomly with no family history.
- Familial. This type is inherited and affects a lesser number of people.
As for how the disease got it’s name, the ALS Association says, “Amyotrophic’ comes from the Greek language. ‘A’ means no. ‘Myo’ refers to muscle. ‘Trophic’ means nourishment. So, amyotrophic means ‘no muscle nourishment,’ and when a muscle has no nourishment, it ‘atrophies’ or wastes away.
“‘Lateral’ identifies the areas in a person’s spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates, it leads to scarring or hardening (‘sclerosis’) in the region.”
Understanding a Caregivers Role
Assuming the role of a caregiver when a spouse, parent, sibling, child, or friend is diagnosed with cancer, or a disease like ALS, comes with a unique set of responsibilities. The first thing to understand is that there is no shame in asking for help. This can be an overwhelming time for both patients and their caregivers, too.
Through interviews with expert oncologists, social workers, patients advocates, and more, we’ve come up with a checklist of helpful steps cancer caregivers can take throughout the journey.
RELATED: The First Steps to Take as a Caregiver When a Loved One Is Diagnosed With Cancer
Cancer caregivers may:
- Attend doctor visits with the patient
- Help the patient take notes/ask questions
- Provide transportation to and from treatment
- Accompany the patient during treatment
- Help keep track of side effects
- Link up with a social worker/patient navigator
- Help with day-to-day activities
- Provide emotional support
Social Workers/Patient Navigators Can Help
Social workers or patient advocates can be a huge help for cancer caregivers during the journey. As a caregiver, you may want to enlist the help of one of these employees who often work for cancer centers for guidance on treatment options, financial assistance, where to seek mental health resources, and so much more.
“Patient navigators can function differently at different hospitals,” Dr. Kathie-Ann Joseph, a surgical oncologist at NYU Langone Health’s Perlmutter Cancer Center, told SurvivorNet. “We have a really wonderful program at [NYU] where we use lay navigators, meaning they’re not nurses, although you can use nurses or social workers, who pretty much help newly diagnosed cancer patients through the continuum of care.”
Dr. Kathie-Ann Joseph explains how patient navigators can help throughout the treatment process.
These navigators can meet with patients from their first doctor appointments and can also:
- Attend appointments
- Provide an assessment for the next steps of care
- Assist with housing, transportation, or immigration issues
- Help with financial issues
- Provide direction on legal issues
Where Caregivers Can Find Help With Finances
Figuring out finances can be particularly stressful for a cancer caregiver. It’s often difficult to find resources (and determine what assistance programs any given patient may be eligible for).
In some states, you may even be able to receive compensation for taking on the role of caregiver if you need to take time off from your everyday work.
If your loved one is being treated at a cancer center, you may be able to enlist the help of a social worker or patient navigator. These employees may be able to direct you towards financial assistance programs, help negotiate bills and payment plans, talk to your insurers, and link you up with advocacy groups.
There are also many options cancer patients and their loved ones can look to for assistance covering costs, including:
Covering Caregiver Costs
Some states offer compensation to cancer caregivers. You can check with the Department of Health and Human Services for local resources.
CancerCare also offers free services to caregivers, and its oncology social workers may be able to connect struggling caregivers with mental health professionals, support groups, and other resources.
For Help With Treatment Bills
The Cancer Financial Assistance Coalition can direct patients and their families to available local services.
Many treatment centers offer extended payment plans and some may offer temporary payment delays, according to the American Cancer Society.
CancerCare, which connects patients with oncology social workers, may be able to assist with co-pays, transportation, and other costs associated with care.
The HealthWell Foundation may be able to help uninsured patients pay for treatment.
The American Cancer Society may be able to link patients and their families up with local resources (they offer a 24/7 helpline).
The Patient Advocate Foundation (PAF) works with patients and their insurance companies to resolve issues and may provide direct financial support to some patients.
The Patient Access Network Foundation may be able to help with out-of-pocket costs associated with cancer treatment.
For Help With Transportation and/or Housing
Several programs, including Air Care Alliance, the Corporate Angel Network, and PALS (Patient Airlift Services), may be able to assist patients who need to travel by plane to get treatment.
Patients with Medicaid may be entitled to help paying for transportation costs to and from treatment.
The American Cancer Society’s Road to Recovery program can hook patients and their families with volunteer drivers.
Mercy Medical Angels may be able to help patients and their families pay for transportation.
The Healthcare Hospitality Network can assist with housing if a patient must be treated far from home.
The American Cancer Society Hope Lodge Program gives patients and their caregivers a free place to stay during treatment in dozens of cities across the U.S. and Puerto Rico.
For Help With Food
- Food assistance may be available to cancer patients and their caregivers. Look into the Supplemental Nutrition Assistance Program—aka SNAP—or a program like Meals on Wheels.
Pastor Tom Evans shares some advice for managing life as a caregiver.
Remember, Cancer Caregivers Should Seek Professional Help If They Need It
When a stressful life event occurs, like a loved one being diagnosed with cancer, people respond in a variety of ways.
“The way people respond is very variable,” Psychiatrist Dr. Lori Plutchik told SurvivorNet. “Very much consistent with how they respond to stresses and challenges in their life in general.”
When struggling with a new stressor, there are many different and healthy ways to cope. For some people, this may mean seeking out traditional therapy, but it’s not the only option.
Psychiatrist Dr. Lori Plutchik discusses how people may respond to stressors in very different ways.
If you are struggling mentally due to the stress of being a cancer caregiver, there are many options to help you cope. These include:
- Seeking professional help from a psychiatrist or therapist
- Learning healthy coping skills
- Medication such as antidepressants
- Adding more physical activity to your routine
- Adjusting your sleep schedule
- Connecting with others via support groups
- Mindfulness and meditation
Contributing: SurvivorNet Staff
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