BASIC HOME CARE FOR ADVANCED ALS/MND CLIENTS: From a Consumer's Perspective

Why the Book?

A myotrophic Lateral Sclerosis (ALS) is a heterogeneous group of diseases. ALS or Motor Neuron Disease as it is called in Britain, or Maladie de Charcot in France, is a devastating degenerative illness with no known medical remedy at the time of going to press. Lot of progress has been made in recent years leading to 4 FDA- approved medicines, technological advancements in diagnosis and communication remedies.

The approval of Tofersen for familial ALS associated with the sod1 gene marks a milestone. Research efforts targeting specific immune pathways are ongoing. Other research approaches involving gene-editing, stem cell therapies and targeting specific gene mutations in the field of personalized genetic therapy will hopefully lead the approval of Tofersen for familial ALS associated with sod1 gene marks a milestone. Research efforts targeting specific immune pathways are ongoing.

Other research approaches involve gene-editing, stem cell therapies and targeting specific gene mutations in the field of personalized genetic therapy will hopefully lead to breakthroughs.

Please note that the word ‘client’ refers to the consumer of health services in any non-hospital setting, whereas ‘patient‘ is associated with hospital services consumers. However, both words are interchangeably used in this mini-book.

At the time the author was diagnosed more than a decade ago, there wasn’t enough consumer-centered literature to assist clients and caregivers.

My intention in writing this mini-book is to give both new and more experienced caregivers a quick cheat sheet, when in a fix about what to do for their consumers before professionals are accessed.

Okey Nwangburuka,