Newly diagnosed: ALS
Newly diagnosed with ALS? Here is this week.
Newly diagnosed with ALS, one thing in this first week cannot wait, and it is the one families most often learn about too late: record the patient's voice now, while speaking is still comfortable. From a short recording ExpressAgain builds a personal voice, so that months from now I love you still sounds like the patient, and the rest of the week is the record: the ALS phrases opening first, every clinician on one page and the family in one private circle.
What to do this week
Record the voice this week
From Settings, record the patient speaking, or upload a recording, and the app creates a personal voice from it. Until it is ready, phrases speak in a clear built-in voice, so the patient is never without one. The voice lives with the account and is there on the patient's own device.
Where it lives: Settings, Voice and Accessibility · Read how it works
Choose the ALS and Parkinson's mode
Its phrases open first: needs right now (please reposition me, I need suction), breathing support (please put on my BiPAP, the mask is leaking, I need my cough assist), moving, eating and swallowing, equipment, and decisions and planning: I want to decide this myself; please ask me, not my family.
Where it lives: Phrase Library · Read how it works
Put every doctor on the Care Team page
One card per person: a name, a role and a phone number to tap and call. A card has no login; when a clinician should read the record, Give access turns the card into a login with a single-use code for that discipline, and the person joins at the IDC Team sign-in.
Where it lives: Care Team page · Read how it works
Start the care plan
Choose Set up the patient's care: a few questions, one per screen, saved as you answer. The answers decide which parts of the plan are needed now, open the pages where they live, and become the patient's plan at the top of the menu.
Where it lives: Getting started, Set up the patient's care · Read how it works
Today: the voice recorded while speaking is comfortable, the ALS phrases first, every clinician on one page and the plan started.
How to start
Create a free account: your name, email, a password and who the app is for, with the patient's name. Communicating is never behind a paywall, so nothing on this page waits on a card.
The first time you sign in, choose Set up the patient's care or Start talking now: a few questions, one per screen, saved as you answer, that open the right pages first and become the patient's plan.
From My People, tap Invite family and friends: each person gets a personal link that works once and a role (full access, family, or extended). On the Care Team page, add every doctor as a card to tap and call.
Read next
- Just got the diagnosis? Here's what to do next.
- Home care, home health, hospice or palliative care? What each one means, and when you need it.
- Do you really need a caregiver, or do you need a nurse?
- How to choose the right care provider for your loved one.
- How to build a care schedule for your parent or loved one.
- The tools and equipment you'll actually need to care for someone at home.
- How to coordinate family visits without overwhelming anyone.
- Caregiver burnout is real. Here's how to protect yourself.
Questions people ask
Why record the voice so early?
A personal voice is built from a recording of the patient speaking, and the recording is best made while speaking is still comfortable. Recorded now, it keeps the patient sounding like themselves for every phrase later. The blog's Voice banking and a cloned voice explains the choice.
Can the patient keep making the decisions?
Yes, and the library is written for it: I want to talk about my care plan, I want to decide this myself, I need more time, please ask me, not my family. On the Visitors page the patient says I would like visitors today or No visitors today.
Which clinicians can join the record?
Every discipline has its own code: Physician, Nurse, Speech, Physical and Occupational therapist, Palliative care, Hospice, Home health aide and more. Each joins at the IDC Team sign-in and reads the day plan, the medications, the tracking and the notes.
Is it free to start?
Yes. Free is where everyone starts, and communicating is never behind a paywall: tap to speak, the phrase boards, the sentence builder, Letters, the Phrase Library, lessons, Games and Play, the emergency screen, the Emergency Plan Card and the built-in voice. Free also invites 2 family members to the Family and Friends Feed. The Pricing page shows the plans side by side.
What happens after I sign up?
Sign up asks for your name, email and a password, and who the app is for. Then the guided setup takes four short steps: who the app is for and the condition mode, text and button sizes, a voice and the first people, then a review. Entering the patient's name and date of birth pins the two phrases hospitals ask for constantly.