Spastic Diplegia--Bilateral Cerebral Palsy: Understanding the motor problems, their impact on walking, and management throughout life: a practical guide for families

Families can make a huge difference to spastic diplegia outcomes. This is the map parents and caregivers have long needed, to understand this vast territory, orient to where they are, and then chart the best course to their child’s fullest potential.It’s also a guide to the many people they will meet along the way, as they build relationships with multidisciplinary teams, and step into their new role as owners of the condition on their child’s behalf.The book gives a comprehensive account of the gold standard for management and treatment from birth into adulthood, written in collaboration with leading specialists in the field. The scientific and medical detail is rigorously researched, then brought to life with the warm perspective of a parent describing 25 years of navigating daily life and treatment options with her own son. The author explains how her own understanding developed over time, and how she learned to work with doctors, therapists, and others (both in Europe and the U.S.) on her son’s path to self-management. Each chapter is detailed, accessible, empowering, and never dumbed down.We haven’t seen a handbook like this before, connecting what academics and specialists know about spastic diplegia with a perspective on the child (and adult’s) real life at each stage. It’s the work of a scientist, parent, and practical optimist, sharing the kind of knowledge that can transform lives if it lands in the right hands at the right time. Reading it, you realize how many other complex conditions call for a book like this.

Reading this book, I felt excited for colleagues and families who will have this compact amazing resource at their fingertips. The book has been written to give parents the tools to be equal partners in the management of their child. It is packed with rich lists of evidence-based references and useful weblinks for the management and treatment of the child, adolescent and adult with bilateral spastic diplegia cerebral palsy. It focuses on the impact motor problems have on walking. It does not therefore attempt to deal with the early management of the baby or very young child with spastic diplegia cerebral palsy. However, the author does make a plea for a diagnosis to be given as early as possible to allay fears and frustrations experienced by parents and for them to able to proceed with knowledge. She reports on a growing body of evidence demonstrating that the brain is capable of recovery after an injury. The consistent format of each chapter, the paragraph lengths, the explanations and the inspirational little quotes provide for a very accessible book for everyone. In addition to being a book to help parents to understand the language surrounding cerebral palsy this book highlights the research conducted to date and the very great need for further research into all areas of development, from the infant with cerebral palsy through to adulthood.Ann Jenkinson (Physiotherapist)Ex Manager Gait Laboratory CRC

This is a brilliant book, I just wish it had been around 14 years ago when my daughter was diagnosed. The most important thing I have learnt over the years is that to get the best outcomes for your child you need to educate yourself so that you can advocate for them when discussing treatments/options with doctors. This book helps you to do this in a very thorough but easy to understand way. This is a must-read for both parents/carers of children with spastic diplegia and medical practitioners. Thank you Lily Collison!!!!

To the ordinary person like myself a diagnosis of Spastic Diplegia Bilateral Cerebral Palsy is very scary.As a non medic it seems there is nothing you can do. The worst possible outcomes are foremost in your mind.Lily's Book helps you to face the fear. Tommy's Story is inspirational. I have to admit the title of the book scared me a bit I thought it would be too Technical. I actually read all the pink boxes first-Tommy's personal journey, from the time they got the news that their beautiful child had CP. The family rose to the challenge. Solutions were found to every new problem that spastic diplegia threw at him during childhood and adolescence and Tommy was empowered to become the Independent young man he is today. Every parents dream.It was also interesting to read other peoples stories. This book gives everyone the benefit of one woman's amazing research into Spastic Diplegia Bilateral Cerebral Palsy. I think it is an inspirational handbook for any person with this condition. It is written in a way that, every parent, grandparent, or friend of someone with this condition could read and use as a reference book . A MUST READ for medics as well to understand the parents and child's point of view.

Cerebral Palsy was totally new to me when I read this book, and it serves as a wonderful and practical guide. It describes the what and how that Cerebral Palsy affects our lives, from diagnosis to treatment and life management, in a way that is thorough and actually readable. The medical jargon is explained and understandable. I feel as if a friend was guiding me through it, but that friend just happens to be someone with a lifetime of experience and knowledge navigating the latest in treatment. It’s given me food for thought as I consider my and my family’s health and the importance of movement in our lives.