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An empowering and evidence-based guide for living a full life with spastic diplegiaโbilateral cerebral palsy. โA must-read for professionals, parents, and the individual with CP.โ โDeborah Gaebler-Spira, MD โThis detailed and practical book on spastic diplegia, written by a parent in conjunction with medical practitioners at Gillette, is simply brilliant and fills a huge gap.โ โLori Poliski, parent _______________________________ SECOND EDITION NOW AVAILABLE: Spastic Diplegia - Bilateral Cerebral Palsy: Understanding and Managing the Condition across the Lifespan: A Practical Guide for Families Cerebral palsy (CP) is the most common cause of childhood-onset lifelong physical disability. Approximately one-third of those with CP have the subtype spastic diplegiaโalso known as bilateral spastic CP, or simply bilateral CP. An estimated 6 million worldwide have spastic diplegia. Until now, there has been no book focused on this condition to help this large group of people. This book focuses on the motor problemsโproblems with bones, muscles, and joints, and their impact on walking. The Gross Motor Function Classification System (GMFCS) is a five-level system that indicates the severity of the condition. This book is relevant to those at GMFCS levels I to III: those who are capable of walking independently or with a handheld mobility device. These three levels account for the majority of people with spastic diplegia. The book addresses how spastic diplegia develops over the lifespan and explains the evidence-based, best-practice treatments. It empowers parents of young children, and adolescents and adults with the condition, to become better advocates and coโdecision makers in the medical process. The focus of this optimistic, yet practical book is on maximizing activity and participationโliving life to its fullest. Health care professionals, educators, students, and extended family members will also benefit from reading this book. Indeed, while this book focuses on spastic diplegia, much of what is addressed also applies to other forms of spastic CP at GMFCS levels I to III, namely hemiplegia and quadriplegia. Written by Lily Collison, a parent of a son with spastic diplegia and a medical sciences graduate, in close collaboration with senior medical experts from Gillette Childrenโs Specialty Healthcareโa world-renowned center of excellence for CP treatmentโthis is an excellent, long-needed resource for spastic diplegia. _______________________________ โI highly recommend this book to people who have CP, parents, family members, and medical professionals.โ โHank Chambers, MD โA must-read for parents and children with spastic diplegia, and if its guiding principles are followed, it will do much to ensure that their child reaches maturity with an optimal outcome.โ โJames R. Gage, MD Review: Finally! Rigor and empathy in a comprehensive guide. - 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 childโs fullest potential. Itโs 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 childโs 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 sonโs path to self-management. Each chapter is detailed, accessible, empowering, and never dumbed down. We havenโt seen a handbook like this before, connecting what academics and specialists know about spastic diplegia with a perspective on the child (and adultโs) real life at each stage. Itโs 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. Review: The guidance your expert friend would give you - 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. Itโs given me food for thought as I consider my and my familyโs health and the importance of movement in our lives.
| Best Sellers Rank | #1,522,264 in Books ( See Top 100 in Books ) #94 in Occupational Medicine #447 in Disability #1,470 in Nervous System Diseases (Books) |
| Customer Reviews | 4.8 out of 5 stars 88 Reviews |
D**Y
Finally! Rigor and empathy in a comprehensive guide.
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 childโs fullest potential. Itโs 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 childโs 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 sonโs path to self-management. Each chapter is detailed, accessible, empowering, and never dumbed down. We havenโt seen a handbook like this before, connecting what academics and specialists know about spastic diplegia with a perspective on the child (and adultโs) real life at each stage. Itโs 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.
S**I
The guidance your expert friend would give you
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. Itโs given me food for thought as I consider my and my familyโs health and the importance of movement in our lives.
C**S
Easy to read
The author does a great job of explaining and breaking down a complicated range of issues in Cerebral Palsy (CP). I liked that you can jump around in the book based on where you are with the condition. The book has great photos and short chapters, as well as real life experience sprinkled throughout the book. There is a lot of information on the internet about cerebral palsy and it can be overwhelming to make heads of tails of information. This books is a great start for navigating CP. I've not found another book that is just focused on spastic diplegia.
J**.
Incredible resource
I wish I had this book when my daughter was diagnosed 7 years ago! It is still proving to be an incredible resource and has taught me so much about the disability. A one stop shop for information!
A**R
A Must Read Guide
Lily's book is a must read for anyone working with young athletes with CP. Her masterfully written book weaves together a wonderful spirit of optimism with practical tools for parents, educators, coaches and medical professionals. As we look to grow the Paralympic Movement in the United States, Lilyโs work is critical to elevating the level of development programs available to young Paralympic hopefuls.
B**N
An exceptional book.
An exceptional book--written with the clarity and precision of a top-class scientist and the compassion and compulsion of a mother who simply wanted to help her son. The author has made it her life's work to understand the condition and its treatment and to share her knowledge with others. It is both a definitive reference book and an inspiring read.
R**L
Readable and easy to use resource
This is a spectacular resource for individuals, families, clinicians, researchers and providers of all types. Chock full of useful information and poignant personal reflections! It is very readable. An easy to use book with cause for optimism for those with this condition.
B**A
A new category of medical book that takes more perspectives into account
Lily has likely created a new category of medical book that takes into account both the physical and emotional journeys of patients and caretakers. So glad it exists and hope there will be more like it!
A**Y
Parents as Partners
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
M**E
A must-read book
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!!!!
G**E
A must read book for professionals, parents and all carers
This is an excellent book absolutely 5 stars. I have a son with cp myself (10years now)and upon reading the book I wished it had been available when my son was young when I was desperately seeking information and advice but I feel so lucky to have found it now as the book touches on every challenge as well aspect of care from childhood to adulthood . The dept of understanding of the author (as she is a parent herself) is papalibe throughout the book.One of the most outstanding achievement of this book in my opinion is how the clinical condition and the advice for life are delivered in a manner that is accessible to all.I couldn't praise this book enought and what a gift the author has brought to the world of cerebral palsy, spastic diplegia through her indept understanding, incredible insight and vast clinical knowledge and expertise.
B**E
This book is a "MUST READ' if you know a child that has Spastic Diplegia Bilateral Cerebral Palsy.
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.
M**T
Helpful informative book
So far, really useful book
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