![\"Actor](\"https:\/\/www.newsbeep.com\/nz\/wp-content\/uploads\/2026\/02\/1772135170_899_0x0.jpg\")
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Actor Eric Dane, who recently died from ALS<\/p>\n
The Washington Post via Getty Images<\/p>\n
Actor Eric Dane\u2019s recent death from amyotrophic lateral sclerosis (ALS) has drawn national attention. Public tributes celebrated his career, while conversations surrounding his family\u2019s GoFundMe campaign<\/a> have underscored the financial realities many families confront after this diagnosis. <\/p>\n Beyond the headlines lies a deeper and more urgent discussion: what life\u2014and death\u2014look like for patients living with ALS.<\/p>\n To better understand both the clinical and scientific landscape, I spoke with Dr. Marissa \u201cMaria\u201d Mapa<\/a>, an internal medicine and palliative care physician who treats patients with ALS, and Dr. Melanie Leitner<\/a>, chief scientific officer of the ALS Investment Fund, about current and future research directions.<\/p>\n What Happens to The Body During ALS?<\/p>\n ALS is a progressive disease that affects the body\u2019s ability to move. It attacks the nerve cells that send messages from the brain to the muscles. As those nerve cells fail, the muscles grow weaker and smaller from lack of use, resulting in gradual loss of independence. Simple actions\u2014buttoning a shirt, walking across a room, holding a fork\u2014become difficult. Eventually, patients with ALS lose the ability to speak, swallow, and breathe on their own. Though the body weakens, the mind often remains intact, making the progression especially devastating for patients and their families.<\/p>\n The CDC estimates roughly 30,000 people in the U.S live with ALS. It affects more men than women and is usually diagnosed between ages 55-75. Most patients survive 2-5 years after symptoms develop.<\/p>\n What ALS Looks Like at Home for Patients?<\/p>\n Mapa described the course of ALS in stages. Early ALS are often subtle and intermittent: dropping objects, shaking while holding a coffee cup, tripping more often, difficulty rising from a chair. Mid-stage disease brings more consistent motor weakness. In advanced stages, patients may be unable to eat independently, breathe without assistance or move independently.<\/p>\n \u201cI had a patient at the end who could not do anything but blink,\u201d Mapa recalls. \u201cThat\u2019s how she communicated.\u201d<\/p>\n Unlike many other terminal illnesses, ALS often leaves cognition intact. \u201cThe saddest thing is their mind is fully intact,\u201d Mapa says. \u201cThey can\u2019t do anything. They can\u2019t talk. They can\u2019t breathe. They\u2019re totally in there.\u201d<\/p>\n That awareness can amplify both the emotional and logistical burden for families. She tells by mid-stage disease most patients would already qualify for 24 hours of support. <\/p>\n One practical rule of thumb Mapa offers families considering full-time care: \u201cIf you were to fall and there was a fire, could you get yourself out of the house? If you cannot get yourself out of the house, you need someone there with you 24 hours a day.\u201d<\/p>\n Dr. Marissa “Maria” Mapa<\/p>\n Dr. Marissa “Maria” MapaSupporting ALS Patients through Death<\/p>\n Dr. Maria Mapa says the hardest part of her job is seeing patients seek palliative care and hospice too late. Many people misunderstand palliative care as \u201cgiving up,\u201d when in reality it is about optimizing comfort, supporting quality of life, and guiding difficult decisions throughout the course of the disease.<\/p>\n \u201cYou can have palliative at the beginning of the diagnosis,\u201d she explains. \u201cYou could start talking to ALS patients about what to do when you can\u2019t breathe anymore, or when you can\u2019t eat anymore.\u201d<\/p>\n Early palliative care allows patients to express their wishes directly, helping families make decisions in line with their loved one\u2019s values. Without these conversations, loved ones often end up \u201cplanning for them,\u201d rather than planning with them.<\/p>\n Hospice is a specific form of palliative care for patients nearing the end of life, typically when life expectancy is six months or less. It provides intensive in-home support, covers medications and equipment, and helps reduce the financial burden for families. Yet many ALS patients enroll later than ideal. \u201cI see ALS patients get onto hospice much later than they could benefit,\u201d Mapa says. Common triggers for hospice include difficulty eating or breathing, unintentional weight loss, frequent hospitalizations, and growing dependence in daily activities.<\/p>\n Early discussions, often through palliative care, also help families navigate some of the most challenging decisions. \u201cFew decisions are as emotionally charged as whether to place a feeding tube or pursue ventilator support,\u201d she says. \u201cFood is life, right? Food is comfort,\u201d Mapa says. For some, losing the ability to taste or enjoy food can profoundly affect quality of life. Feeding tubes do not change the underlying disease and can introduce complications\u2014aspiration pneumonia, infections, or repeated hospitalizations\u2014making the final months less peaceful.<\/p>\n \u201cThe better way,\u201d Mapa emphasizes, \u201cis as soon as the person is diagnosed, get a palliative goals-of-care conversation on the books.\u201d Advance directives, health care proxies, and clear discussions about what quality of life a patient would\u2014or would not\u2014accept help patients set the tone for their journey and guide families in decision-making.<\/p>\n The Financial Toll of ALS<\/p>\n Depending on insurance coverage, the financial strain for ALS patients is real.<\/p>\n Many are younger, privately insured, and not yet eligible for Medicare. \u201cThey\u2019re kind of in the donut hole,\u201d Mapa says. \u201cThey make too much to be eligible for some services, but they don\u2019t make enough to cover them all.\u201d<\/p>\n Continuous, in-home caregiving can cost $15,000 to $30,000 per month, while facility-based care may run $8,000 to $10,000 monthly. Geography and service type affect pricing. Mapa shares some families purchase their own equipment, medications, feeding supplies and home modifications. \u201cCosts escalate quickly,\u201d she shares. <\/p>\n