By Penned by Me · Published and last reviewed November 4, 2026 · Editorial policy
A life story journal can work for someone living with ALS when the writing is shared: the person tells the story in whatever way is comfortable, by voice, with a communication device or with a signal, and someone they trust writes it down word for word. The result is a book in their own words, filled at their own pace.
Why writing a life story together makes sense
ALS affects the muscles people use to move and to speak. Holding a pen can get tiring, and speaking can take more effort than it used to. The wish to tell their own stories usually stays just as strong. When a helper does the physical writing, the storyteller stays in charge of what is said and how.
How to write together, step by step
- Choose a time that suits them. Ten or fifteen minutes in the part of the day when they feel best is plenty. Stop when they say so.
- Let them pick the question. Offer two or three and let them choose, or skip all of them and start with whatever is on their mind.
- Use their way of communicating. Speech, a communication device, an eye-tracking system, a letter board or a clear yes and no signal can all work. Give them time. Silence is part of the process.
- Write word for word. Do not tidy the sentences. The joke, the odd phrase and the repeated word are the voice you want on the page.
- Read it back. Ask "Is that right?" and change anything they want changed.
- Record who told it and who wrote it. It gives the helper a place in the story and keeps the book honest.
What to look for in a journal for this
- Pages made for telling and writing. Space where a helper can write what the storyteller says, not only a page for private writing.
- Short, open questions. One question to a page, easy to answer in a sentence or in a long story.
- Large, clear print. Easier for the storyteller to read along, and for a helper to follow in low light.
- No order and no pressure. Any page can be skipped or left blank, and the book can be opened anywhere.
- Wide writing lines. A helper can write at a comfortable size, and a family member can add a note.
- A cover and paper that last. This is a book people may keep and read for years.
How Penned by Me fits
The large print life story journal has eleven Write Together pages for exactly this. The storyteller tells the story, by voice or with a communication device, and a helper writes it down word for word. Each page records who told it and who wrote it, so the voice stays theirs. The questions are in 18 point, the book has 128 cream pages at 7 x 10 inches, and any page can stay blank. It is a journal, not a medical or therapeutic tool, and it does not treat or slow any condition.
If you are still deciding on a format, our guide to a large print life story journal explains what to check, and how to help a parent write their life story covers the helper's side in more detail.
Starter questions for the first session
- What is the best meal you ever shared with someone?
- Where did you feel most at home growing up?
- What is something you are proud of that few people know?
- Who made you laugh the most, and what did they do?
- What would you like your grandchildren to hear from you, in your own words?
Any of these can be skipped. If they would rather tell a story that is not on the list, write that down instead.
Questions families ask
Can someone with ALS write a life story if they cannot hold a pen?
Yes. In a shared approach the person tells the story in their own way and a helper writes it down word for word. The book stays theirs because they decide what goes on each page.
How long should a writing session be?
Ten or fifteen minutes is enough, and one question or even one sentence counts. Short, regular sessions at a good time of day usually work better than long ones.
Who should be the helper?
Someone the storyteller trusts and is comfortable with: a spouse, son or daughter, grandchild, friend or caregiver. What matters most is that they are patient and write exactly what was said.
Does a journal replace professional support?
No. A journal is not a medical or therapeutic tool. For communication aids and care questions, start with the care team. The ALS Association is a good place to find support and resources.