ALS Care Guide

Amyotrophic lateral sclerosis (ALS), also called Lou Gehrig's disease, is a progressive neurodegenerative disease that destroys the motor neurons controlling voluntary muscle movement. As neurons die, muscles weaken and eventually stop functioning — affecting movement, speech, swallowing, and breathing. Cognitive function is typically preserved (though frontotemporal dementia occurs in ~5–15% of cases). Median survival from symptom onset is 2–5 years, though approximately 10% of people with ALS live 10+ years. Stephen Hawking famously lived 55 years with ALS. Rate of progression varies significantly by individual.

The timing of PEG (percutaneous endoscopic gastrostomy) tube placement is one of the most important clinical decisions in ALS care. The recommendation is to discuss and place the tube early — while forced vital capacity (FVC) is still above 50% — because the surgical risk increases significantly as respiratory function declines. The tube does not replace oral eating; it supplements nutrition and hydration when swallowing becomes difficult or unsafe. Waiting until a crisis (severe aspiration pneumonia, significant weight loss, FVC < 50%) makes the procedure higher risk. Have this conversation at the first sign of swallowing difficulty.

ALS has several special Medicare provisions. First, people diagnosed with ALS receive Medicare coverage on the first month they are entitled to Social Security Disability Insurance (SSDI) — the usual 24-month SSDI waiting period for Medicare is waived. ALS also qualifies for expedited SSDI review (no 5-month waiting period). Once enrolled in Medicare, coverage includes: Part B for physician visits, outpatient therapy (PT, OT, SLP), and durable medical equipment (power wheelchair, BiPAP, AAC device, cough assist, feeding pump) when medically necessary; Part A for hospice; and skilled home health when homebound. The ALS Association's patient services team can help navigate coverage and equipment applications.

ALS Association Certified Treatment Centers of Excellence are multidisciplinary clinics specifically organized to deliver comprehensive ALS care in a single visit. A typical clinic visit includes a neurologist, pulmonologist, physical therapist, occupational therapist, speech-language pathologist, nutritionist, social worker, and ALS-specific nurse coordinator — all seeing the patient in one appointment rather than requiring separate visits. Research published in The Lancet Neurology found that patients treated at multidisciplinary ALS clinics have significantly longer survival and better quality of life. If ALS is diagnosed, seeking care at a Certified Treatment Center should be the first priority.

Several options exist across the progression of ALS. Voice banking (recording natural speech into platforms like ModelTalker) should be done early — before speech deteriorates — so a synthetic version of the person's own voice can be used later. As speech worsens, augmentative and alternative communication (AAC) devices become essential. These range from iPad apps ($150–$300) to dedicated speech-generating devices (SGDs) covered by Medicare Part B when prescribed by a speech-language pathologist. Eye-gaze technology allows full communication control using only eye movement, critical when hand function is also lost. The ALS Association provides free AAC loans and can connect patients with SLPs experienced in ALS communication devices.

Hospice is appropriate when a person with ALS — and their physician — agrees that the focus of care should shift to comfort rather than life prolongation, and when life expectancy is estimated at 6 months or less. For ALS, this conversation often arises around significant respiratory decline (FVC < 30%, respiratory distress), inability to eat without tube feeding, or exhausted caregiver capacity. Importantly, electing hospice does not mean stopping all intervention — BiPAP, feeding tubes, and AAC devices can continue under hospice. Hospice brings palliative symptom management, 24/7 nurse access, home aide support, and bereavement support for the family. The ALS Association can help facilitate the transition to hospice with an ALS-experienced team.

Several programs help offset ALS care costs. The ALS Association provides direct patient services including equipment loans (power wheelchairs, hospital beds, BiPAP machines) free of charge through local chapters — this can save tens of thousands of dollars. Social Security Disability Insurance (SSDI) has no 5-month waiting period for ALS, and Medicare eligibility begins in the first month of SSDI entitlement (the usual 24-month delay is waived). VA benefits (Aid & Attendance, PCAFC) may be available for veterans. Some states have ALS-specific state-funded programs. The ALS Association's Patient Services coordinators can help identify all applicable programs — contact them immediately upon diagnosis.