Guillain-Barre Syndrome: 5 Years Later

By Brian S. Langton

This book is about three people from different walks of life, each of whom experienced a life-changing episode of Guillain-Barr Syndrome. Three dramatic stories in one.

Firstly, a story of the Author's remarkable almost complete recovery following his encounter with the syndrome. It is a frank and personal account of his struggle to regain much of what he had lost in bodily function during one year of hospitalisation. It should provide inspiration and possibly answer so many questions typically asked by others afflicted with this syndrome.

Secondly, case studies written by two co-author contributors, one a Calgary Veterinarian and mother of two, the other a retired Vancouver resident who was struck with Guillain-Barr Syndrome whilst shopping for a boat in England.

"There is no single answer to the question as to how life may change after recovery from this disorder. Each case appears to be unique. That is why I have chosen to include, not just a record of my partial recovery, but also the recovery record of two additional people, each different from one another's and each certainly different from mine (Author's Preface)".

"We eventually identified a boatonly three feet short of what we had wanted that was within our budget.

At this point Heather's brother, who lived nearby, said he would like a share in the boat, to which we agreed. During this discussion in his house I had to ask him to refrain from smoking, as my throat was quite sore. I was feeling rather run down and often felt cold. About the same time on a Saturday, I felt a tingling in the finger tips of my left hand and found they were a bit swollen. I mentioned it to Heather, but it did not seem serious. It was, however, the first sign that I had contracted GBS. If only I had known, the treatment might have been started earlier! (Patrick Hill)"

"Probably the worst face of Guillain-Barr Syndrome is the effect it has on loved ones. Severe, or not, chronic or not, it matters little to the supporting family at the bedside of a patient. Fear, puzzlement, and apprehension are all experienced by the loved ones. Reading the case histories of Sarah and Patrick, one learns how their spouses also suffered many frightening experiences, but in spite of all that, they remained obviously without second thought, hesitation or doubt. True to their marriage vows, they provided so much love, care and support. That was the shared experience among the three of us (Author: Epilogue)."

• Language: English
• Publisher: Trafford Publishing
• Release date: Feb 16, 2007
• ISBN: 9781425197261

Brian S. Langton

Brian S. Langton 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 June 1998 when he became paralyzed by a 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. His book, A Dream Impossible, is a collection of short stories, describing some of the dreams he experienced during his seven-month stay in Intensive Care, some moving, some frightening, but most really hilarious.

Book preview

Guillain-Barré Syndrome

5 Years Later

Stepping closer to recovery

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Brian S. Langton

Sarah Ondrich & Patrick Hill

Information & hope for anyone dealing with GBS

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Opinions expressed in this book do not represent medical advice and reflect

only the personal viewpoints of the author or contributors. No liability will be

accepted for any persons acting in any manner whatsoever based on information

contained in this publication.

© Copyright 2006 Brian S. Langton.

All rights reserved. No part of this publication may be reproduced, stored in

a retrieval system, or transmitted, in any form or by any means, electronic,

mechanical, photocopying, recording, or otherwise, without the written prior

permission of the author.

Note for Librarians: A cataloguing record for this book is available from Library

and Archives Canada at www.collectionscanada.ca/amicus/index-e.html

ISBN 1-4120-8872-0

ISBN: 978-1-4251-9726-1 (ebk)

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Offices in Canada, USA, Ireland and UK

Book sales for North America and international:

Trafford Publishing, 6E—2333 Government St.,

Victoria, BC V8T 4P4 CANADA

phone [phone] (toll-free 1 888 232 4444)

fax [phone]; email to [e-mail]

Book sales in Europe:

Trafford Publishing (UK) Limited, 9 Park End Street, 2nd Floor

Oxford, UK OX1 1HH UNITED KINGDOM

phone [phone] (local rate 0845 230 9601)

facsimile [phone]; [e-mail]

Order online at:

trafford.com/06-0628

10 9 8 7 6 5 4 3 2

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This book is dedicated to my wife,

Sylvia, and our daughters

Ruth, Kim, and Sally.

CONTENTS

Foreword

Author’s Preface

Author’s

Acknowledgements

Part One

A Brief Introduction

Chapter 1

What is Guillain-Barré Syndrome?

Chapter 2

What Causes GBS?

Part Two

A Second Step—

Road to Recovery

Chapter 3

Another Challenge

Chapter 4

The Value of

Good Caregivers

Chapter 5

Changing Mind-Set

Chapter 6

Vital Ingredients for Success

Chapter 7

A Fifth Year Highlight

Chapter 8

Then, Six Years Later

Part Three

Altered States

Chapter 9

Locked In

Chapter 10

The Long Road Home

Chapter 11

Perspectives

Chapter 12

Back to Work

Chapter 13

Self Direction in Healing

Chapter 14

Testimonial

Part Four

Chapter 15

Introduction

Chapter 16

First Indications of GBS

Chapter 17

Hospitalised

Chapter 18

GBS Confirmed / Treatment

Chapter 19

About Pain Experiences

Chapter 20

Dreams and Hallucinations

Chapter 21

Slow Improvement

Chapter 22

Insurance Problems

Chapter 23

In Rehabilitation

Chapter 24

Rehabilitation at Home

Epilogue

Appendix 1

Endnotes

Appendix 2

Support Resources

Appendix 3

Reading List

About the Author

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Foreword

I am delighted to have been asked by Brian Langton to provide a foreword for his new book, Guillain-Barré Syndrome 5 Years Later. Like the first text describing his saga, this one provides a very compelling story. Both texts should be mandatory reading for healthcare workers involved with patients battling GBS and both offer considerable help to GBS patients and their families. It’s a story that needs to be told, but it’s only the rare person who possesses the bravery and diligence to put it down. Brian and his colleagues Sarah Ondrich and Patrick Hill have accomplished that.

Modern Neurology is slowly getting better at identifying treatments for the devastating disorders it deals with: stroke, MS, Parkinson’s disease. Neuropathy remains the untold story and falls below most public radars. GBS, as is clear from Brian’s story, can be more devastating than the higher profile conditions that most members of the public are aware of. As carefully described in Chapters 1 and 2 of this text, GBS, or Guillain-Barré Syndrome (named after some of the physicians who first described it), is a disorder of peripheral nerves, or a neuropathy. Neuropathies involve a different part of the nervous system than MS or stroke. Neuropathies involve the peripheral nervous system rather than the central nervous system. They disrupt the essential connections between the brain, spinal cord, and our muscles or sensory organs. Without peripheral nerves there is no movement, no sensation. GBS is only one of the neuropathies—they are a wide body of disorders that include leprosy in the developing world and diabetic neuropathy, a problem that is exploding in prevalence worldwide. Carpal tunnel syndrome is an example of a neuropathy involving a single nerve (median nerve at the wrist) that interrupts the work and leisure of many people. GBS, however, is a very striking example of what more serious disease of the peripheral nervous system can do. In patients like Brian, all of the peripheral nerve connections can be disrupted and there is literally no movement, no sensation. It is difficult for the rest of us to imagine what it might be like to be locked in by GBS. It is even more difficult to imagine recovering and writing two books about it.

GBS, as also described further on in this book, involves an autoimmune inflammation of nerves throughout the body. A number of viral and bacterial triggers have been identified. There is an important Canadian side to the story of how treatment evolved for GBS. At the University of Western Ontario in London Ontario, two neurologists, Angelika Hahn and Thomas Feasby, discovered that the serum from patients with GBS when injected into the nerves of rats generated a syndrome very similar to GBS in humans known as EAN (experimental allergic neuritis). Initially treated with scepticism, this work was, however, a critical clue that inflammatory molecules in the blood, or serum, of patients with GBS (antibodies, complement) might cause the nerve damage. If removed, the disease might be arrested. Careful trials across North America (then elsewhere) of plasma exchange, a dialysis-like procedure that removes serum antibodies and complement from the blood, indicated that GBS could be shortened. Later, investigators discovered that a blood product, IVIG (intravenous gamma globulin) could provide similar benefits. In 2006, we have two types of treatment to attenuate the disease but no cure. Both are only useful when they are given during the early stages of the disorder.

Brian Langton’s current book highlights some very important insights into GBS but also into neurological disorders generally. While we have made some gains in the acute treatment of GBS and other disorders, recovery from neurological damage is slow, incomplete, and very frustrating for the patient and his or her family. There is a pressing need for ways to facilitate regeneration in the nervous system. When a patient suffers an acute stroke from an interruption of the blood supply to the brain, the damage to nerve cells is irreversible. Patients can only recover as the brain establishes new kinds of connections while the patient works with rehabilitation therapists to optimize function. In the case of GBS, a very intense level of inflammation at the outset not only can damage myelin insulation (a reversible form of damage) of nerves, but unfortunately can also damage the critical wiring, or axon. Some types of GBS primarily attack axons, not myelin. Axon damage is devastating and only slowly recovers. For example, if axons to the arm are damaged at the level of the shoulder, hand function may never recover (nerve axons regrow only at a maximum of 1-2 mm per day, or an inch a month). It is this slow, incomplete, and unsatisfactory regeneration from GBs that leaves protracted damage.

Brian and his fellow GBS patients tell us about this prolonged and more difficult battle, yet also tell us how they have beaten it. There are many important sides to their stories for all of us to reflect upon.

Douglas W. Zochodne, MD, FRCPC,

Professor and Consultant Neurologist,

Department of Clinical Neurosciences,

Hotchkiss Brain Institute and Calgary Health Region,

University of Calgary,

3330 Hospital Drive, N.W.,

Calgary, Alberta, Canada, T2N 4N1

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Author’s Preface

Four or five years after recovering from Guillain-Barré Syndrome and writing my first book, A First Step: Understanding Guillain-Barré Syndrome, it occurred to me that there was very little information in the public domain about life after Guillain-Barré Syndrome. Importantly, answers to the question, How would a person’s life be affected? were missing.

Hoping to provide some insights on this subject, I decided to write another book. In compiling this work, I have been most fortunate in obtaining the contributions of two very special people, both of whom suffered from Guillain-Barré Syndrome shortly after I had that same misfortune: Sarah, a Calgary veteri-narian—and for a time, fellow full-time rehab pa-tient—and Patrick, a gentlemen from Vancouver.

This book could well have been called Unique Stories of a Descending—and Disappearing—Paralysis! It is the story of recovery from a most devastating illness, Guillain-Barré Syndrome. It is the story of three people whose lives were suddenly and dramatically changed, and who then with courage and perseverance, fought their way back to health—maybe not totally, but close, and even today, continue that fight.

As with the syndrome itself, symptoms vary from person to person within certain parameters, and each story is unique to the writer. The stories are both dramatic and compelling reads, each starting with an introductory chapter, describing their lives up to the point of being diagnosed with Guillain-Barré Syndrome.

There is no single answer to the question as to how life may change after recovery from this disorder. Each case appears to be unique. That is why I have chosen to include, not just a record of my partial recovery, but also the recovery record of two additional people, each different from one another’s and each certainly different from mine. Although it may also be noted that in my story of recovery I have posed questions regarding one or two comments made by physicians, this is not intended to take any credit away from attending doctors or nurses in the Intensive Care units of either the Calgary Foothills or Rockyview Hospitals. Those dedicated medical professionals provided exceptional care, which gave me the chance I needed to win the battle against virtually total paralysis. I am and will be forever truly grateful for their care and compassion.

In writing this book, I am assuming some readers will have knowledge of Guillain-Barré Syndrome¹, or GBS as it is sometimes known, as a patient, relative, or friend of a patient, or through personal or pro-fessional involvement with a person who has been diagnosed with this disorder. The descriptions included in the opening chapters are, therefore, more of a summary for those dealing with this syndrome for the first time.

One thing above all is worth noting: Although our lives may not be quite the same after GBS, there is ineach story a very upbeat message. Life goes on!

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Author’s

Acknowledgements

Grateful thanks to my wife, Sylvia. It would not be possible to follow the path I am treading without her love, patience, and understanding.

Thanks to Dr Douglas Zochodne for his kind encouragement and advice and for his important contribution to this book.

A big thank you to my fellow contributors, Sarah On-drich and Patrick Hill. I feel proud and privileged to be associated with them and to include their dramatic and courageous stories in this work.

To Tara Burroughs, whom I have to thank for the suggestion that inspired me to include other Guillain-Barré Syndrome experiences.

I gratefully acknowledge the kindness of Dr Joel S Steinberg for permission to reproduce excerpts from the publication authored by him, Guillain-Barré

Syndrome—An Overview for the Layperson, and also of its publisher, the Guillain-Barré Syndrome Foundation International.

Acknowledgements too, to the Globe and Mail and Public Health Reporter Andre Picard for kind permission to reproduce excerpts from an article written by Andre, entitled Researchers Question FDR’S Polio Diagnosis, published October 31, 2003.

Thanks to Brian and the team at Pneuma Books LLC. A wonderful job, yet again!

To Jae Malone, my editor. Another excellent job.

Thanks, Jae.

On a personal note, thanks too, to my current care-givers, Asunta Wol and Carol Richards for their dedication, support, and encouragement. I am amazed they have had the patience and tolerance to put up with me for