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🧭Care Guides

Plain-language guides to the decisions that shape ALS care — what they mean, when to consider them, and questions to bring to your care team. Informational only, never a replacement for your clinicians.

When to think about it

Ask for a referral as soon as speech feels even slightly effortful. Once speech declines it can change quickly, so setting up tools early gives you time to learn them.

Options
  • Voice banking / message banking — record your own voice while it's strong
  • Speech-generating apps on a phone or tablet
  • Dedicated AAC devices and eye-gaze (eye-tracking) systems
  • Low-tech backups: letter boards, yes/no systems
Questions to ask your care team
  • Can you refer me to a speech and language therapist now, before I need it?
  • Is voice or message banking worth doing while my speech is still clear?
  • Which device would suit my hands, eyes, and home setup?
  • How is the cost covered, and how long does it take to get one?

Early referral is widely recommended because speech can deteriorate faster than devices can be arranged.

These guides are general information to help you prepare for conversations — they are not medical advice. Decisions should always be made with your care team.