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Experience of MND - accounts by patients and relatives
Despite the short duration of the illness, a few people with MND have written book-length narratives about their experience of the disease. Both Irish film-maker Simon Fitzmaurice and English journalist Joe Hammond wrote accounts of their initial experiences and of the time after diagnosis. Simon also allowed a fellow documentary film-maker Frankie Fenton to construct a visual account, supplemented by his own footage. This documentary was issued as It's Not Yet Dark in 2017. Shorter articles about living with the disease include historian Tony Judt's observations about night-time fears, and Joe Hammond's efforts to create birthday cards for his sons to read after his death.

Family members have also written accounts. Jane Hawking's memoir of life with physicist Stephen Hawking was certainly out of the ordinary, but it also dealt with common experiences, such as how families cope with a member on the edge of despair, or with young children's responses, or with carers in the home. Simon Fitzmaurice's wife Ruth also dealt with the experiences of children in her memoir I Found My Tribe as well as the way her own life was turned upside-down by Simon's disease.