Synopsis
: The book provides an overview of Amyotrophic Lateral Sclerosis (ALS), also known as "Motor Neuron Disease" in Britain or "Maladie de Charcot" in France. ALS is a degenerative disease with no known cure at the time of writing. Despite this, significant progress has been made, including the approval of four FDA-approved medicines and advancements in diagnosis and communication technology.
A notable milestone is the approval of Tofersen for familial ALS linked to the sod1 gene. Ongoing research focuses on specific immune pathways, gene-editing, stem cell therapies, and targeting gene mutations for personalized genetic therapy, which may lead to future breakthroughs.
The book clarifies terminology, using 'client' for non-hospital health service consumers and 'patient' for hospital service consumers, though the terms are used interchangeably. The author, diagnosed with ALS over a decade ago, felt there was insufficient consumer-centered literature for clients and caregivers. This mini-book aims to provide caregivers with a quick reference guide to assist their clients before professional help is available.
Autobiography
: Okey Nwangburuka, MD, was diagnosed with ALS more than a decade ago. A retired clinical psychiatrist, he held four board certifications before the physical and emotional ravages of the disease forced him into an administrative role in his career. Dr. Okey lives in California with his children.