A First Step - Understanding Guillain-Barre Syndrome - Softcover

Langton, Brian S.

Softcover

ISBN 10: 1553694112 ISBN 13: 9781553694113

Publisher: Trafford Publishing, 2006

Synopsis

A First Step - Understanding Guillain-Barré Syndrome provides a fresh perspective on a devastating illness, and is a frightening story of a rarely talked about disease from the point of view of one in good health who was suddenly stricken with almost total paralysis. The book is comprised of two distinct parts: Part I, 'What Really Happened', a more or less blow-by-blow account of the effect Guillain-Barré Syndrome had on the author and close family, from its surprise onset, through treatment and subsequent rehabilitation; Part II, 'In Dreams', a vivid description of dreams and hallucinations experienced during seven months of Intensive Care.

About this title

About the Author

Brian S. Langton first contemplated writing a book while lying, virtually paralysed, in a rehabilitation ward. He had earlier been stricken with a particularly serious form of Guillain-Barré Syndrome, sometimes referred to as G.B.S., and had already spent over seven months in intensive care, more than six of those months on a ventilator for breathing assistance. He had recovered his ability to speak, and was becoming used to entertaining visitors by recounting some of the dream sequences he had experienced during his period of hospitalisation. He was interested and encouraged by the positive messages he appeared to be providing to his visitors.

Many of the dreams were quite hilarious, in spite of Brian's serious predicament, and it occurred to him that a collection of them would make for interesting reading. It had also become evident that few had experience of G.B.S., and he was constantly being made aware of just how rare the illness was, and of the nursing community's appetite for knowledge about the Syndrome. It was this realisation which prompted Brian to seriously consider writing a book, not just about the dream sequences but to produce a sort of handbook on G.B.S., suitable for medical professionals, caregivers, G.B.S. patients and relatives, alike.

Upon eventual discharge from hospital, Brian carried these thoughts home. He could not write at that time. It was only just possible for him to move his right arm in a limited way from the shoulder. His recreational therapist had arranged a one finger splint to allow him to use a computer keyboard by pressing one key at a time, but it would take more than that to write a book, or so he thought. It was not until a student caregiver convinced him that he was physically capable of writing the book he was contemplating, even if it meant using 'voice software' and possibly, if the worst came to the worst, by the one finger typing method.

Thus encouraged, and in spite of no writing experience, Brian, with the help and encouragement of that student, commenced work on his book at the start of the new millennium, January 2000.

Brian was born in Derbyshire, England in 1928. He was educated at the West Bridgford Grammar School, Nottingham. After two years of service in the British Army, he embarked on an accounting career, which eventually led to a senior financial position in Salisbury, Wiltshire. In 1977, having achieved his career ambition, he emigrated for the second time, to the 'Blue Sky country' - Alberta, Canada - with his wife and three daughters, seeking new challenges.

It was in June 1998 when he met with the catastrophic life-threatening illness, Guillain-Barré Syndrome. At the time of his frightening encounter with that disease, Brian was a healthy 'young' sixty-nine year old International Sales Manager. He was an enthusiastic golfer, even if, in his own words, not particularly good. In addition, he enjoyed various other hobbies, each one calling in its own way for physical fitness. These included gardening, model railroading, and walking. He had, and still has, a keen interest in nature. He loved to spend much of his leisure time walking and enjoying the wildlife that was so abundant in the area close to his home in Calgary.

His book, A First Step - Understanding Guillain-Barré Syndrome, is a personal account of a battle for survival against an acute, chronic form of that rare disease, and his subsequent determination to return to as normal a life as possible. His story should be an inspiration to others.

Excerpt. Š Reprinted by permission. All rights reserved.

Author's Preface

After a few moments, the reader will quickly realize this is not a medical textbook. Having said that, I should also say that, being the frightening story of a rarely talked about disease told from the point of view of one who was suddenly stricken with almost total paralysis, it would not be out of place in the library of any medical professional.

While there is much technical information on the subject of Guillain-Barré Syndrome (G.B.S. for short) available in medical texts and journals, little has been written about the syndrome that explains, from a patient's perspective, what a sufferer, his family, and friends have to endure. My experience as such a patient shows me that not all nurses and therapists are familiar with G.B.S. and the unique needs of a patient afflicted with the syndrome. It is my hope that this publication makes a contribution towards filling that void.

Guillain-Barré patients, like me, who are unfortunate enough to experience the almost total paralysis that comes with one of the most severe forms - acute, chronic axonal G.B.S. - have unique needs. In addition to the inability to control body functions, they are unable to communicate. In my case, I could not speak, move my lips, my eyes or my arms. Writing messages, therefore, was out of question. I could not even wiggle my ears!

Thankfully the paralysis stopped short of affecting my brain. Fortunately, this is typical of the Guillain-Barré Syndrome. I am convinced that having an active mind while virtually all body functions had shut down, caused me to experience a whole range of dreams, nightmares, and hallucinations, as though my brain had a compelling desire to stay occupied. These forays into 'alternate states' were so realistic that, in many cases, it was difficult, if not impossible, to distinguish them from reality. I have spoken to other patients with G.B.S., and they claim to have had similar experiences.

Some of the dream sequences - and I will use that phrase throughout this book, although many were actually nightmares - were hilarious, somewhat hilarious, or just plain scary. This book is comprised of two distinct parts. Part I, 'What Really Happened', is a more-or-less blow-by-blow account of the effect Guillain-Barré Syndrome had on my close family and me from its surprise onset, through treatment and subsequent rehabilitation.

The second part of the book is devoted to describing some of those dream sequences referred to above. Because they take the reader into the mind of a G.B.S. patient, I believe they can provide further insights to medical professionals and interested readers about the inner experiences of long-term intensive care patients afflicted with Guillain-Barré Syndrome and other illnesses. Some of the needs and experiences of such patients may come as a surprise and contradict previously held beliefs. I'm certain that fellow G.B.S. sufferers and their families will relate to many of the situations described and have many similar stories of their own.

The decision to publish sprang from the need to encourage patients afflicted with this syndrome to face the future with optimism; to acknowledge the hard work necessary to get better; and, above all, to affirm the critical importance of a sense of humour. For those who accept the challenge, there is, indeed, light at the end of the tunnel. I firmly believe that with the right mindset, anything is possible.

Enjoy your read! Although the subject matter is serious, there is quite a lot of fun stuff between the covers.

Edition details

• Publisher: Trafford Publishing
• Publication date: 2006
• Language: English
• ISBN 10: 1553694112
• ISBN 13: 9781553694113
• Binding: Paperback
• Edition number: 1
• Number of pages: 434