Locked-In Syndrome and the Misplaced Presumption of Misery

August 8, 2022

(Undark) – While research into LIS patients’ quality of life is limited, the data that has been gathered paints a picture that is often at odds with popular presumptions. To be sure, wellbeing evaluations conducted to date do suggest that up to a third of LIS patients report being severely unhappy. For them, loss of mobility and speech make life truly miserable — and family members and caregivers, as well as the broader public, tend to identify with this perspective. And yet, the majority of LIS patients, the data suggest, are much more like Lopes: They report being relatively happy and that they want very much to live. Indeed, in surveys of wellbeing, most people with LIS score as high as those without it, suggesting that many people underestimate locked-in patients’ quality of life while overestimating their rates of depression. (Read More)