Community & Stories Reporting
Finding meaning together in life after 16 years with ALS
Relevant to understanding long-term life and meaning with ALS
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Content is anchored to trusted sources where available, but Compass has not yet been clinically reviewed. It provides general information rather than medical advice.
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Community & Stories Reporting
How I learned to live — and thrive — with ALS
Relevant to people seeking lived experience and ways of adapting to life with ALS
Community & Stories Discussion
Pursue creativity, keep on learning and doing
Relevant to people seeking meaningful activities and ways to maintain engagement
Community & Stories Discussion
This is how it ended
Relevant to families preparing for or reflecting on disease progression and loss
Community & Stories Discussion
Home from final mother/daughter trip
Relevant to families navigating final trips and shared experiences near end of life.
Community & Stories Discussion
Using Voice AI tools to record audio stories for family/grandchildren.
Relevant to people exploring voice-preserving ways to share stories with loved ones
Community & Stories Discussion
Monthly MEGATHREAD: Research and Feedback Outreach
Relevant to people sharing experiences and feedback about ALS research.
Community & Stories Discussion
Next Steps / Saying Hello
Relevant to people seeking connection with others affected by ALS/MND
Community & Stories Discussion
Neglect in My Mother's ALS Care, Family Denial, and Caregiver Burnout – Need Perspective & Advice
Relevant to caregivers facing neglect concerns, family denial, and burnout.
Community & Stories Compass
Will I Still Be Alive on My 40th Birthday?
Offers a specific reflection on living with uncertainty, milestones and communication changes.
Community & Stories Reporting
Embracing the pandemonium in life with ALS
Relevant to lived experience and emotional coping with ALS
Community & Stories Discussion
A tribute to my dad: an inventor who fought ALS for over 10 years, and a thank you to this community
Relevant to families processing long-term caregiving and bereavement
Community & Stories Discussion
HE STOOD UP!!! FOR THE FIRST TIME IN 6 MONTHS HE STOOD UP!!!
Relevant to families looking for hopeful examples during a difficult period
Community & Stories Discussion
Using the toilet
Relevant to caregivers supporting toileting and bathroom needs
Community & Stories Reporting
ALS limits the shared experiences my husband and I can enjoy
Relevant to families adapting shared experiences around progressive disability
Community & Stories Reporting
Knowing my body isn’t my enemy helps me be at peace with ALS symptoms
Relevant to living with ALS symptoms and finding acceptance.
Community & Stories Reporting
Guest Voice: The collateral damage of ALS
Relevant to understanding collateral effects on families and caregivers.
Community & Stories Reporting
Summer brought moments of normalcy while living with ALS
Relevant to people seeking lived experience of maintaining normal routines with ALS
Community & Stories Reporting
ALS and wildfire smoke remind me there’s only so much I can control
Relevant to people living with ALS navigating environmental hazards and personal uncertainty
Community & Stories Reporting
PBS documentary on runner with ALS explores identity, caregiving
Relevant to families seeking insight into caregiving experiences and emotional challenges.
Community & Stories Reporting
Ex-NFL running back says he ‘chose to fight’ after his ALS diagnosis
Relevant to people seeking lived-experience perspectives after an ALS diagnosis
Community & Stories Discussion
Five Years Later
Offers firsthand insight into adapting mobility, communication, nutrition and daily life over five years.
Community & Stories Reporting
Planting seeds of hope in life with ALS
Relevant to people seeking hope and perspectives on living with ALS
Community & Stories Compass
Keith's special day
Relevant to people balancing MND with employment and adapting mobility at work
Community & Stories Reporting
This ALS caregiver is learning to hit the pause button
Relevant to caregivers reflecting on pacing, stress and sustainable caregiving.
Community & Stories Reporting
Adult children of parents with ALS may need more support, study finds
Relevant to supporting adult children coping with a parent's ALS.
Community & Stories Reporting
A funny thing happened on the way to the ALS forums
May offer a relatable perspective on participating in ALS forums
Community & Stories Reporting
What holding on looks like after 16 years of living with ALS
Relevant to lived experience and coping over many years with ALS/MND
Community & Stories Discussion
Japan with ALS: My Honest Experience
Practical firsthand guidance on accessible international travel with ALS and a power wheelchair
Community & Stories Compass
The conclusions I reach when I imagine life without ALS
Relevant to people seeking lived experience of imagining life without ALS
Community & Stories Reporting
Living simply with ALS means taking it one absurdity at a time
Relevant to people seeking lived-experience perspectives on adapting to ALS
Community & Stories Reporting
‘Emily in Paris’ actor Pierre Deny dies following severe case of ALS
Relevant to families looking for personal accounts of severe ALS and loss.
Community & Stories Reporting
Why I continue to volunteer and stay involved in ALS causes
Relevant to lived experiences and staying connected with ALS advocacy.
Community & Stories Reporting
The ALS community ‘could use a little mercy now’
Relevant to people seeking recognition of the emotional burden of living with ALS/MND
Community & Stories Reporting
Practicing radical acceptance is difficult for me in life with ALS
Relevant to people navigating the emotional realities of living with ALS.
Community & Stories Reporting
Online forums help ALS community members make connections
Relevant to people seeking peer connection and shared ALS experiences
Community & Stories Discussion
The People Who Carry Us
Describes the hidden mental load, sacrifices and practical pressures caregivers may recognise.
Community & Stories Reporting
How my husband and I try to teach our children well in life with ALS
Relevant to spouses and parents seeking lived experience about supporting children during ALS.
Community & Stories Reporting
How I stimulate my mind while caring for my husband with ALS
Provides lived experience about maintaining wellbeing while caring for a spouse with ALS.
Community & Stories Discussion
When Did I Become My Illness?
Relevant to people navigating identity, disability and changing independence after diagnosis
Community & Stories Compass
Redefining Independence
Relevant to adapting independence, communication and daily routines with MND
Community & Stories Discussion
The Fine Line Between Husband and Carer
Relevant to partners balancing caregiving, intimate care and maintaining a couple relationship.
Community & Stories Discussion
When Friendship Changes After Illness
Relevant to understanding changing friendships and loneliness after diagnosis.
Community & Stories Compass
On the Inside of a Clinical Trial
Relevant to people considering trial participation and understanding what taking part involves
Community & Stories Compass
My 2026 Resolution: Don’t Die
Relevant to people seeking lived-experience perspectives on daily routines and coping with ALS/MND.
Community & Stories Compass
The plan I wish I had when I was diagnosed with ALS
Relevant to people seeking practical planning and treatment-option information after diagnosis
Community & Stories Compass
A conspiracy of genes, environment and time: how ALS takes hold
Relevant to people exploring lifestyle changes and sharing lived experience after diagnosis
Community & Stories Compass
Have You Heard of ALS?
Relevant to people seeking lived experience, symptom tracking, and peer support.
Community & Stories Compass
Symposium Highlights: A Former Carer’s Perspective
Relevant to carers facing cognitive and behavioural changes and grief.
Community & Stories Discussion
When Illness Makes You Invisible
Relevant to people navigating social isolation and changing relationships after diagnosis
Community & Stories Discussion
Three Years Into ALS
Relevant to adapting mobility, communication, swallowing, fatigue and daily life with MND
Community & Stories Discussion
The Day I Was Diagnosed
Offers a firsthand account of diagnosis and living with MND.
From Curalysis
- Clinical trials need to leave the clinic2 months ago
- There’s No Map for This5 months ago
- On the Inside of a Clinical Trial7 months ago
Summarised by Compass using AI from the source material. These are not medical advice. Always read the original source.