Go through these in order and stop at the first one that applies. If you are reading this for someone else, answer for them.
These changes may need timely assessment but are not always emergencies.
Seek emergency care for severe or rapidly worsening breathing difficulty, blue or gray lips, inability to wake normally, new severe confusion, or choking with an airway that cannot be cleared.
It allows the person to record preferences about ventilation, feeding support, emergency care, and who should make decisions if communication becomes impossible.
Contact the ALS team promptly about increasing difficulty swallowing, repeated choking, unplanned weight loss, new morning headaches, breathlessness when lying down, a weaker cough, fever, or trouble clearing mucus.
Sudden weakness, chest pain, or other abrupt symptoms also require urgent assessment because they may have a cause other than ALS.
Regular follow-up allows the care team to track strength, breathing, swallowing, nutrition, communication, mobility, mood, and caregiver needs.
Visits may become more frequent as needs change.
Breathing tests and weight checks can identify problems before they become severe.
Advance care planning is part of routine care, not a sign that treatment is stopping.
Every sign above is quoted from the sofidex article on Amyotrophic lateral sclerosis. If you are not sure, err upward — it is always reasonable to be checked.