Until We Knew, Twice: Life With MND/ALS And FTD
By Elisabet O Klint - A Memoir
Elisabet's husband was not yet sixty when diagnosed with Motor Neurone Disease (MND) / Amyotrophic lateral sclerosis (ALS) and Frontotemporal dementia (FTD). This memoir, a retrospective diary, is about the year they lived with his terrible two illnesses; illnesses they 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 MND/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.
Elisabet did her BA at Lund University and made a career in education. She was especially interested in language learning. When her husband fell ill and his speech was affected, she realised how people are interpreted and valued according to how they speak. The family moved to Belgium and then to England, a country she made a home in as a teenager. Elisabet now lives in southern Sweden and her sense of longing pervades her story.
"Elisabet's book is a brave one. It’s a story about a disease and about our most fundamentalrelationships - in this case with her husband and father of their children. Frontotemporal dementia, with or without ALS, is a disease we need to talk more about. In Elisabet´s words, “between medical facts and nothing, there is something”. This book is indeed something." - Alexander F Santillo MD, Consultant Psychiatrist PhD, Associate Professor Clinical Memory Research Unit Lund University
"I just wanted to acknowledge that I had received the book and it has made me think deeply about the service we offer our patients and their families, particularly those presenting with FTD and other dementias, and how we might improve what we offer." - Dr Ian Baker Consultant Clinical Neuropsychologist Honorary Clinical Senior Lecturer Department of Clinical Neuropsychology Oxford Psychological Medicine Centre