Spastic Diplegia—Bilateral Cerebral PalsyFull Reviews

I am the mother of a teenager with spastic diplegia (SD) as well as a health care professional who works with children with disabilities including CP. What we have been missing is a single resource that explains all aspects of spastic diplegia in very clear medical terms, and treatment options available. As advocates for our loved ones, it is important to fully understand this disability so that we can seek appropriate care and have meaningful conversations with health care professionals. This book provides the answers we have all been looking for. It is an excellent resource for anyone involved in the world of spastic diplegia—those affected, parents, caregivers, professionals, and students. This book differs from others in that it is focused on science yet is a practical guide. It is an excellent book to read in its entirety to get a global view of the condition, then to keep on hand as a reference—to reread sections that pertain to each stage in life for the individual with SD. It provides the perfect balance of science and practical knowledge. This book is a must-have for anyone involved with spastic diplegia. With a resource of this quality, the future is bright for all of us.

DR. LINDA A HALLMANParent of teenager with spastic diplegia, Director of Orthodontics, MedStar Washington Hospital Center and Children’s National Medical Center, Washington DC, USA

This co-developed parent–professional book on the focused topic of spastic diplegia is a must-read for professionals, parents, and the individual with cerebral palsy (CP). The range of the book is “real-world focused” with the latest accurate literature incorporated, from diagnosis to treatments, as well as issues such as bullying, school, and adult issues. It is comprehensive, with details that are pertinent to a healthy outcome, yet presented in an intimate, readable format. It serves a unique educational niche. It is a good introduction for professionals who are addressing parents’ concerns and a great in-depth resource for parents. I am recommending it already!

DR. DEBORAH GAEBLER-SPIRADirector Cerebral Palsy Program, Shirley Ryan AbilityLab, Professor of Pediatrics and Physical Medicine and Rehabilitation, Northwestern Feinberg School of Medicine, Past President of the American Academy for Cerebral Palsy and Developmental Medicine, Illinois, USA

This book is excellent, insightful, and educational: it will open minds and touch hearts. It is very clear and easy to read. As an adult with spastic diplegia, I have learned many new things abot my condition from reading it. This book should be required reading for students in medical school and for those training to become therapists. It is massively important for practitioners and those studying to become practitioners to see things (or try to) from the perspective of parents and people who have the condition, whenever possible. 

SAMANTHA MARIE LADEMANNAdult with spastic diplegia, Minnesota, USA

This book provides a comprehensive overview of all aspects of living with bilateral spastic CP and is an invaluable resource for parents and people with CP of any age. Health professionals, researchers and students will find it a useful aid to their studies, teaching, and practice. All chapters are extensively researched, drawing on clinical expertise, research studies, and family/personal experience to provide a complete description of the consequences and management of bilateral spastic CP. Parents and people with CP will find the detailed explanations of treatment and management options an essential aid to making informed decisions. For readers wishing to obtain further information on a specific topic, numerous resources from trustworthy sources are provided. The clear writing style ensures that complex topics are accessible to people without a medical background. The accessible layout allows the reader to refer to specific sections as needed. The combination of evidence-based information and personal experience ensures that this book is an engaging and thought-provoking read, which families and health professionals would benefit from owning.

DR. JENNIFER RYANResearch Lecturer, Royal College of Surgeons in Ireland (RCSI), Dublin, Ireland

Jim Cary was a senior orthopedist and a wonderful mentor of mine at Newington Children’s Hospital in Connecticut, USA. He often used to say, “When it comes to treating their children, parents don’t want science, they want magic!” That is, parents don’t want interventions that merely improve their child’s function; they want the child’s condition cured. Unfortunately, with the type of cerebral palsy known as spastic diplegia, the basic injury is in the brain and it’s permanent. However, the manifestations of this brain injury, which occur primarily during the years of growth, are large remediable with thoughtful and science-directed treatment. Hence, with appropriate treatment, significant improvement of function in a child with spastic diplegia is not only possible, but predictable; whereas poor or misguided treatment often produces irremediable harm. In general, these children are intellectually normal, although they may have specific learning disabilities such as dyslexia (trouble reading) or dyscalculia (trouble with numbers). If discovered early, however, these disabilities may be largely remediated.

 “Spastic diplegia” is a descriptive term. It refers to the type of abnormal tone present (spasticity) and its location (the two lower extremities), as opposed to triplegia (one arm and both legs) or quadriplegia (all four limbs). Hence, the principle problems these children have relate to difficulties with balance and walking/running, or more broadly, gait. The condition is fairly common, and often arises in conjunction with premature birth (i.e., gestation of less than 32 weeks).

 In 1978, I was appointed Director of the Cerebral Palsy Service at Newington Children’s Hospital in Connecticut, USA. After a short investigation of our treatment outcomes, I determined that our results were totally inconsistent. Parents noted this as well and were frequently unhappy either because their child was not improved or perhaps even worsened by the surgical intervention, or because they had unrealistic expectations as to what could be achieved by the intervention. Physical therapists, who also observed these outcomes, frequently saw their principle objective to be keeping the child away from the surgeons.

 Consequently, those of us who worked in the cerebral palsy clinic decided to go back to square one. With the help of United Technologies Research Center, which was based only a few miles from our hospital, we established a state-of-the-art walking analysis laboratory. There we studied the pathology of cerebral palsy and how it altered normal physiology. We used gait analysis both before the intervention to analyze the child’s deformities, and after the intervention to determine the outcome. Using this approach over the next 10 years, we picked a lot of low-hanging fruit. Among other things, we discovered that many of the conventional treatments might produce short-term improvements, but over the years of growth they actually caused harm, and that even though the child’s gait might look improved, their energy cost of walking might be greatly increased. In 1991, I wrote a short monograph entitled Gait Analysis in Cerebral Palsy (London, Mac Keith Press, 1991), which outlined what we had learned in those 10 years

 Reinhold Niebuhr was a theologian, not a physician, but his short prayer—“God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference”—describes the ideal way to treat this condition. In fact, that prayer became the bedrock of our approach to the treatment of spastic diplegia.

 The term “cerebral palsy” refers to the fact that some part of the brain has been injured, and that injury is, for the most part, permanent. However, I always used to tell my orthopedic residents that growth of bones and muscles in a child follows the Star Wars Principle: “Let the force be with you.” That is, normal forces produce normal bone growth and muscle length. The brain injury of spastic diplegia, however, produces abnormal growth forces, and these forces plastically deform the growing bones and produce abnormal shortening or lengthening of specific muscles. The child then develops compensatory mechanisms (coping responses) to circumvent these deformities. The former are often preventable or remediable with appropriate treatment, and the latter disappear spontaneously when the bone and muscle deformities have been corrected and they are no longer needed.

 In 1987, United Technologies Research Center built a second, updated, state-of-the-art motion analysis laboratory at Gillette Children’s Hospital in Saint Paul, Minnesota. Three years later, I accepted the position of Medical Director there and we moved our family to Saint Paul. I met Lily Collison for the first time in mid-September, 2001, when I was lecturing at a cerebral palsy seminar held at the Central Remedial Clinic in Dublin, Ireland. Lily later brought her son, Tommy, to Gillette Children’s Specialty Healthcare in Saint Paul for treatment. That began a doctor-patient relationship that lasted up until my retirement in 2008, and a friendship that has lasted to this present day. Tommy was born in 1994. After he was diagnosed with spastic diplegia a year later, Lily read not only my book but many others as well and, and from a parent’s standpoint, became thoroughly conversant with normal physiology of walking, the mechanisms by which cerebral palsy alters that physiology, and the array of treatments that are currently in use to treat this condition. She became a strong advocate for her son and guided his treatment program from early childhood through his adolescence to maturity. She and her husband, Denis, have seen to bringing Tommy to adulthood as an educated, contributing, self-assured member of society who perhaps has achieved far more than he might have if he had been born without a disability. After accomplishing all of this, Lily wrote a book a book for parents, much as I did for orthopedic surgeons back in 1991. Spastic Diplegia–Bilateral Cerebral Palsy summarizes the knowledge she has gleaned during the years of Tommy’s childhood and adolescence in lay terms that parents can understand. Her book is a must-read for parents of children with spastic diplegia, and if its guiding principles are followed, it will do much to ensure that their particular child reaches maturity with an optimal outcome.

DR. JAMES R. GAGEMedical Director Emeritus, Gillette Children’s Specialty Healthcare, Past President, American Academy for Cerebral Palsy and Developmental Medicine, Professor of Orthopedics Emeritus, University of Minnesota, USA

Lily Collison and the staff at Gillette have taken a very complex disorder—spastic diplegia—and made it comprehensible to the lay reader. CP is a disorder that many clinicians do not fully understand either. As a pediatric orthopedic surgeon who specializes in the care of children and adults with CP, as well as being the father of a 37-year-old man who has CP, I highly recommend this book to people who have CP, parents, family members and medical professionals. It is a fantastic overview of the subject with many insightful passages by those who have taken the journey.

DR. HANK CHAMBERSProfessor of Clinical Orthopedic Surgery, University of California, San Diego, Director of the Southern Family Cerebral Palsy Center at Rady Children’s Hospital, San Diego, Past President of the American Academy for Cerebral Palsy and Developmental Medicine, California, USA

This book is beautifully balanced—from references and information, to the heart of a mom lighting the way for other parents struggling to filter an overload of information. I love the quotations blended into the writing, and the hope and encouragement they give to the reader. I would have loved to have had this book at the time of our son’s diagnosis, and would recommend any family members to also read it for a much deeper understanding of CP and how to help the family and child with CP. This is a book that should stay on a bedside table to reference along the way, and to use as a “devotional” for parents and someday kids as well. So many times you leave a clinic with your head swimming; to have it in written form to reference is a gift. One of the things that I appreciated the most about this book was having it as tangible resource to return to when terms came to mind, but I failed to remember just what they meant. What a gift you have written

CARY SOMMERParent of an eight-year-old with spastic diplegia, Minnesota, USA

Health care is at its best when the patient is at the heart of health services. One of the fundamental components in this process of patient participation is sufficient knowledge about the disease and its treatments. This will allow good communication and making informed choices about treatment. This book provides that knowledge. It tells the complete story about spastic bilateral cerebral palsy, the condition and the current care possibilities. It gives—in clear language—information on all the aspects of life with spastic diplegic CP, adding real-life examples. Patient empowerment begins with information and education. For patients with spastic diplegic CP and their families this book provides a perfect start to become equal partners in their health care decisions.

DR. ANJA VAN CAMPENHOUTPediatric Orthopedic Surgeon, University Hospital Leuven, Belgium

As I read this book I found myself changing hats; one minute I was reading it as a GP, the next minute I was reading it as the mum of a son with a disability. The scientific and medical content of the book is excellent, and I learnt a lot by reading it. It will be of great value for the professionals who provide care for those with spastic diplegia, particularly those just starting their specialized careers. And not only doctors, but PTs, OTs, psychologists, and those working with people with spastic diplegia. From causes through to treatments and management, it is very informative, clear, and comprehensive. As a parent, I would have loved if I had been given the comments in section 3.10, when our son who has spina bifida, was about one year old. The notes in this section are applicable to managing a child with any disability. The personal notes throughout the book are totally engaging. Reading, for example, what SEMLS is and then being able to read the author’s personal experience brings the medical information alive for the reader. It is this technique which kept me, as a parent, interested even when the medical information was very detailed. For a parent of a child with spastic diplegia, this book is an incredible resource. I would have loved one about spina bifida 21 years ago.

DR. SIOBHÁN TEMPANYGP, parent of son with spina bifida, Ireland

This book is a valuable addition to the CP literature, and it will be welcomed by all parents and adolescents/adults with CP. A particular strength of the book is the road map that is outlined as the child with CP grows from infancy to adulthood. Each stage and therapy interventions are carefully described with lay explanations of the confusing medical terminology that parents and children will be exposed to. The addition of reliable and user-friendly web links is very helpful for the reader. Once parents read the book to get an overall sense of the condition, it is then best dipped into as their child progresses through the various developmental and treatment stages. When the adolescent starts seeking information about their CP, the book will be a valuable and informative resource. It should also be read by all professionals working with children and adults with CP and their parents for the insights it gives to their journey through the medical and therapy environment

DR. OWEN HENSEYMedical Director, Central Remedial Clinic, Dublin, Ireland

This is a wonderful resource for people with spastic diplegia and their families, which draws robust scientific information together in a clear and accessible way. Each section is anchored with real-life experiences and personal observations, so we can clearly see the journey that Tommy and Lily have traveled. Teamwork between health professionals, the person with CP, and their family is essential to achieve the best management plan from infancy, through childhood, the teenage years, and into adulthood. This book supports the voice of the person and parents in the team, empowering shared decision-making. This is an essential ingredient of evidence-based practice, where treatment decisions are made based on the best evidence, clinician expertise and the preferences of the person. As someone with CP, or as the family of a child with CP, you need to be equipped with knowledge, and as a health professional, you need to understand the views from the person, parent, and family position. I believe that this book provides both of these perspectives within one cover and is a must-read for people with CP, families, health professionals, and students alike.

DR. CATHERINE BLAKEDean and Head, UCD School of Public Health, Physiotherapy and Sport Science, Dublin, Ireland

This book is a road map for your child’s journey of living with spastic diplegia from birth to adulthood. It is an indispensable guide for families and medical providers. This 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. I needed this book when my son was born almost 15 years ago and didn’t meet his developmental milestones, though he didn’t get a diagnosis of CP until he was much older. I needed it when I was conducting my own research without the skill set on what intervention he needed when he was seven years old. I need it now as he ages and has growth spurts and we are researching orthopedic procedures. I will need it when he becomes an adult and lives independently. Collison writes in clear, concise language. Useful resources and graphics are also included in each section. As a parent, you need to understand the medical language so that you can both understand spastic diplegia holistically and communicate with the many practitioners to ensure the best outcome for your child. It is hard to have family-centered care if the families don’t speak the same language as the medical providers. The unwieldy and challenging process of researching what is best for our children inspired my husband, Paul Gross, to start the Cerebral Palsy Research Network. Parents can help the CP community by getting involved when there is a need which is how this book evolved. This book is an important contribution to the CP community and will help so many parents and caregivers have a deeper understanding of the complexity of spastic diplegia and how to best advocate for the best medical care for our children.

LORI POLISKIParent of teenager with spastic diplegia, Marketing Manager, Cerebral Palsy Research Network, Washington, USA

The wealth of information included in Spastic Diplegia—Bilateral Cerebral Palsy is invaluable. During my tenure at Gillette, working with and learning from families impacted by CP, there was always a passion to provide information that was clear, accurate, and meaningful. Lily has done that, in the words of a “clinician mama.” She knows what it is like to seek and savor information and has written in a manner that will inform families while encouraging them that they know they are not alone in their journey. For the past five years I have lived in Uganda, where we also see many children with CP of all levels. Although we are in a low-resource setting, the team working with children and families also strives to provide the best care possible. Much of what has been described in this book is not yet available here, but the desire to improve options for care is honest and committed. This book, although written for families, has the potential to have a great impact on health care professionals and other stakeholders who have the ability to work on improvements at a more global level. I may not live to see such changes played out but I am enthusiastic that they will come, “slowly, slowly” as we say in Uganda.

SUE MURRPhysiotherapist, Uganda

Lily has done the hard work of making the complex simple and the inaccessible accessible in order to provide the reader with the information needed to understand the specifics of spastic diplegia. Being a parent herself, she presents this information in easy-to-understand language, and medical terms are explained with copious footnotes. Particularly welcome is the explanation of “new” language, the medical terms associated with spastic diplegia, which can be so overwhelming for parents. The book also provides the reader with a picture of what best management and treatment of spastic diplegia looks like. Once again, Lily has done the hard work of researching this life-long condition so that others may know what to expect at each stage of the life cycle. She quite rightly states that this information is what is available now and that as research continues into this condition, management and treatment may look different in the future. The personal vignettes throughout the book are so rich, as is Tommy’s contribution at the end. Thank you, Lily, for providing such an accessible resource for so many people, the person with spastic diplegia, their parents and families, medical professionals, and education professionals like me who prepare teachers to work with children with CP. I will certainly be using it to inform my practice with my students. This book should be on so many people’s reading list!

DR. ANNE O’BYRNELecturer in Inclusive Education for Children with Special Educational Needs, Mary Immaculate College, parent of adult with disability, Limerick Ireland

As a personal trainer who has multiple clients with physical challenges and CP, this book brought a whole new level of insight into what my clients have experienced. It provides a clear description of the muscular and movement challenges that will help inform how to design an effective exercise program for those with spastic diplegia. Rich in encouragement, scientific knowledge, practical advice, and personal stories, it will deepen your empathy and drive to achieve fitness for clients with physical disabilities. This is a book I’ll be referring back to time and time again.

VANESSA LIUPersonal Trainer whose father has CP, California, USA

Spastic Diplegia—Bilateral Cerebral Palsy is a must-read for anyone working with young athletes with CP. This 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, Lily’s work is critical to elevating the level of development programs available to young Paralympic hopefuls. With the Paralympic Games returning to the US in 2028, we have a generational opportunity to advance youth training platforms and the resources available to young athletes. This monumental book helps all of us in the Paralympic movement deliver on that vision. This book is a gift for young people today! Spastic Diplegia—Bilateral Cerebral Palsy provides the hope, tools, and confidence to pursue an elite athletic career at the highest level of sport.

KARA BUCKLEYDirector, U.S. Olympic and Paralympic Properties (USOPP), California, USA

This is a unique book which gives an excellent insight into and holistic understanding of cerebral palsy—spastic diplegia (CPSD) from birth to adulthood. Written by a parent of a person with CPSD who also happens to be a scientist, this book strikes a remarkable balance between summarizing the scientific literature on CPSD and providing insight into the lived experience of a person and family dealing with the consequences of CPSD. This includes the challenges of understanding medical terminology, navigating health care support systems and making care decisions which may have long-term consequences. The text is written in a very clear and understandable manner making it accessible to non-professionals and lay people with an interest in understanding CPSD. This book will assist any parent or relative of a child with CPSD or indeed a young person themselves in understanding their condition, the most effective treatment approaches, and, most importantly, what they themselves can do to influence outcome. Improved understanding and a broad whole-of-life perspective, such as can be gained from reading this book, will facilitate any individual or family living with CPSD to take more control over their health care decisions and partner with available health and social care providers in co-designing their own health care plan. This book should also be read by all professionals working with persons impacted by disability and specifically CP. Not only does it serve to provide insight into the experience of consumers of our care, but because of the extensive reference and reading list, it is also an excellent learning and information resource on spastic diplegia for professionals.  

MIKE WALSHHead of Specialist Services and Research, Central Remedial Clinic, Dublin, Ireland

Much of the information and literature I have experienced regarding cerebral palsy, hemiplegia and its treatment to date has been extremely complicated, over scientific, disparate, and with little consistency or practical advice. This book is the polar opposite and is a fantastic resource for parents and professionals alike. It concisely explains the causes, diagnosis, classifications, and treatments of cerebral palsy. Most importantly, it emphasizes the power of parents as advocates for their children and the importance of this advocacy to ensure the best outcomes for them. The book reminds the reader that it is not enough to trust that our children are being provided with the appropriate support and services; they may need much more than this, and the more we can provide and the earlier it can be done the better their likely future potential and outcome. Though this book focuses on spastic diplegia, I still gained a lot of understanding of my daughter’s hemiplegia from reading it. Having read this book I felt validated in all that I have done for my daughter so far but also refocused and motivated to continue to educate myself and ensure that my daughter is enabled to get the best possible opportunities for a bright and happy future. To this end, I wish that an equivalent book might soon be written for hemiplegia

EIMEAR GABBETTParent of an eight-year-old with hemiplegia, Ireland

I compliment the author of this amazing “sat nav” for parents, siblings, families, carers, and teachers who may be setting out on a care journey of a young person with [cerebral palsy] spastic diplegia. The work is hallmarked with clarity, sincerity, and simplicity. It is wonderfully honest, humble, and caring. It is full of anecdotal evidence and personal testimony that breathes life into the pages. The author dots the corridor of the care journey with rich relevant quotations, marvelous explanations, and moving stories. Two common threads that particularly resonated with me were that social connectedness and partnership must reign at all stages of life, and how the parent views the child and their abilities or disabilities will largely dictate how others approach them. This book is a clean and lean road map for anyone faced with the care and management of the condition, whatever their role. I don’t think there is anyone who wouldn’t benefit from reading this book.

UNA COLLINSTeacher of children aged four to 13, whose sister has a disability, Ireland

When someone important to us is living with a long-term health condition, we often want to know what we can do to help. However, locating accurate, easy-to-understand information, specific to our needs, is not always easy. Parents and caregivers of children living with spastic diplegia will find this book provides them with such information. The author, Lily Collison, knows of what she writes. Her 25-year-old son lives with spastic diplegia. She also provides context to the information by sharing her own and others’ stories. I especially appreciated her honest sharing about guilt: “I encourage parents to waste no time on guilt—we are where we are and must move forward.” The book brings the unique voices of people with lived experience to the forefront. I recommend it without reservation to those interested in these voices.

DR. DÉSIRÉE B. MALTAISAssociate Professor, Rehabilitation Department, Université Laval, Researcher, Centre for Interdisciplinary Research in Rehabilitation and Social Integration. Quebec City, Canada