Until We Knew, Twice (Life With MND/ALS and FTD)

Elisabet's husband was not yet sixty when diagnosed with Amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD). This memoir, 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.

By sharing her story, Elisabet hopes to contribute and raise awareness of FTD and ALS. She hopes these pages will teach and educate readers and holds out for the improvement in healthcare. With support from many around her, a loneliness that felt unnecessary was loud.