“ It is as if the person becomes the privileged spectator of his own disintegration.". In his live For Sophie and all the others, Investigations for the right to choose one's death, co-written with Angèle Delbecq and Jean-Louis Touraine, Mark Hunter describes the nightmare experienced by his wife, who died from Lou Gehrig's disease after months of suffering.
Also known as amyotrophic lateral sclerosis (ALS), this syndrome causes progressive paralysis of the muscles, affecting mobility, speech, swallowing, and even breathing, but without affecting consciousness and reasoning in the majority of cases. Its prognosis is poor: " the outcome is fatal after 3 to 5 years of development on average,” indicates Inserm. And today, there is no long-term treatment. Only a few drugs, such as riluzole and edaravone, offer modest benefits in prolonging the life of some patients and providing relief.
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