Until We Knew

Elisabet's husband was not yet sixty when diagnosed with Amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD). By sharing her story, Elisabet hopes to contribute and raise awareness of FTD and ALS.

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Elisabet's husband was not yet sixty when diagnosed with Amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD). This notebook, a retrospective diary, is about the year they lived with his illnesses; illnesses neither knew nothing about before the slow and challenging path towards diagnoses. Elisabet took care of her husband while his increasing needs progressed with the diseases. A day-to-day roller coaster with each day full of emotions, some conflicting. With two small children, Elisabet initiated an evening routine which was to address the illness with the children head on by dedicating time to talk about it. Special moments were filed away as memories and this became their goodnight story.