Serious illness and isolation
People living with ALS often describe a particular loneliness — the experience of being fully mentally present while the body becomes progressively harder to communicate through. Connection remains essential, even as it becomes harder to reach.
ALS is a condition in which the mind typically remains clear as the body loses function. This creates one of the most painful kinds of isolation: the experience of being mentally intact, with all of one's feelings, thoughts, and desires for connection, while losing the physical means of expressing them. People in early and middle stages of ALS often describe social relationships changing as others become uncertain how to behave, how to help, or what to say.
Friends who were once close become distant. Conversations become shorter, more careful, more exhausting for everyone involved. The person with ALS — who needs connection more than ever — often finds it harder to access than before.
Families and caregivers of people with ALS carry enormous weight. The social life of the person with ALS often becomes entirely mediated through their caregiving relationships — which means that the caregiver also becomes, unintentionally, a gatekeeper to connection. Both the person with ALS and their caregiver can find themselves isolated, for different reasons.
Mindfuse offers a private channel — for the person with ALS or their caregiver — to talk to someone outside the immediate caregiving circle. To be a person having a conversation, not a patient or a carer, for the duration of a call.
For those in early stages of ALS where voice remains, Mindfuse offers an anonymous, low-barrier way to have a real conversation with a real person. No explanation required. First conversation free. €4/month. iOS and Android.
A real conversation with a real stranger. Private, anonymous, available now.
One free conversation · €4/month · iOS and Android